Rebekah Faith - Redefining 'Incompatible With Life'

Through My Eyes...

2012-01-30T18:12:00.000-05:00

Through My Eyes...

If only you could see my little girl through my eyes,

the way I see her...

She is so beautiful!

She is so happy!

She is so full of unconditional love!

She often looks at the ceiling and her eyes follow things I cannot see.

Then she giggles and darts her eyes in another direction,

as if to see the angels that are hidden from my view.

Her heart is so pure, she knows only love.

Oh, how it breaks my heart to hear the bold, ugly comments about 'her'

and her trisomy brothers and sisters.

"She would be better off dead."

"She doesn't know the difference between her father and the door."

"Kill them all!"

"How can you bring a child into the world knowing they will live a life of pain?"

"She 'suffers' from trisomy 18."

"You must've done something bad to have a child like that."

Oh, the terrible things said about these children from uneducated and heartless minds.

My daughter does not 'suffer' from trisomy 18.

Our world suffers from inhumanity and self-centeredness.

To love my daughter and those like her is to truly know and understand agape love.

SIGH...

"If only you could see the world through my eyes," whispers a voice to me.

"A world were love knows no bounds,

a world where everyone is beautiful,

a world where everyone has a purpose."

Was that her voice speaking to me?

Or that of Jesus, gently nudging me to love and forgive as he has.

I have been given a most precious gift...

the gift of life, the gift of love.

I wish you, too, could experience this.

I wish you could see things through my eyes.

Getting 'PLASTERED'

2012-01-30T00:50:00.000-05:00

Rebekah has scoliosis, and it seems to be getting progressively worse. We go to a Shriners Hospital to follow its progression and they have been reluctant to do many interventions. But each x-ray has been getting steadily worse, so they agreed it was time to do something to try to slow down the progression. The danger of scoliosis, especially an 'S' curve scoliosis, is that it will eventually crowd the heart and one lung restricting growth and obviously causing problems. We are a long way from that point, but it seems evident that we will eventually get there. The doctor would like to slow down the growth as much as possible so that we can hold off on any kind of surgery until she is a teenager. Once you fuse the spine, put rods in place, or any of the other surgical methods for correcting bad scoliosis, you stunt growth so that the patient can really no longer grow. While there are some nonsurgical casting procedures, they are not considered as effective for 'S' curve scoliosis as for 'C' curve scoliosis, especially in patients with a chromosome disorder.

There are many types of scoliosis braces. The original plan was to get a hard shell TLSO (Thoraco-Lumbo-Sacral-Orthosis brace, or also known as a Boston brace). But because the corrective pressure put on her during the casting did not result in a >50% improvement, we went with a TLSO that has more padding and less hard plastic and will be a little more breathable. The doctor is hoping it will encourage us to use it more often and therefore be more effective in the long term. But we have to try to balance maintaining her spinal curve with improving her development. In any case, the braces hinder her development by limiting her movement and adding a lot of weight to her already weak muscles.

Here is a picture story of the process of getting fitted for a TLSO, which includes being plastered in a cast.

9/21/11 S Curve Measurements: Top - 27 degrees, Bottom - 29 degrees
12/14/11 S Curve Measurements: Top - 33 degrees, Bottom - 30 degrees

Getting ready for the casting. First a tight body shirt is placed on the patient. The shirt has no obvious seams to cause irritation and the same kind of shirt is worn under the TLSO to help prevent breakdown of the skin.

Rebekah was placed on a crazy contraption and balanced on about a 2 inch wide 'sling'. Then warm, wet pieces of plaster were wrapped around her body from below the arm pits to right below the hip bones. Then they were smoothed down. Rebekah seemed in a trance and loved the attention, proprioceptive input, and the warmth. They stated she was, by far, the easiest 2 year old they had done!

Then her feet are put in straps at one end and her head put into a sling of sorts. They applied pressure to 3 different points in order to compensate for and correct the scoliosis. Then they 'crank' the contraption and stretch her out like the medieval 'rack' used in torture chambers. (It didn't really hurt her, just gave her a nice stretch. She actually didn't complain during the whole process; it probably felt really good on her back.) She was kept in this position for about 10 minutes until the plaster was hardened.

Once hardened, she was taken out and carried to x-ray to see how well the correction worked.

Here she is getting the x-ray done. The pins show the sections where the correction pressure points were placed.

Here is the x-ray with the cast. From my untrained eye, it seemed tons better than the previous x-rays. But it didn't improve her scoliosis the desired 50% or better goal. The S curve was now about 117 degrees on the top and 21 degrees on the bottom. The bottom curve was much harder to correct and clearly is bone growth, not weak muscle as previously thought by the doctors during earlier x-rays. This means we will not be able to correct the curve, but we will try to slow down the progression so that it does not get real bad before puberty, the preferred time for any surgical interventions since growth of the spine can be stunted once surgery is performed. Even the growing rods only have a certain amount of growth capability built into them. All of this was disappointing to hear. But we are committed to doing what we can to improve Rebekah's condition without greatly hindering her developmental growth opportunities. The trick is to figure out how much use of the brace is necessary to slow the growth down while we continue to see developmental gains and encourage Rebekah to sit on her own and move and roll around. A brace would certainly limit her movement and exploration at this critical stage of her development.

With the x-rays over, the plaster cast can now be removed. A little hand saw is used and it is cut in a straight line that was drawn on her during the casting process. Right under the line is a heavy weight strip of material that prevents the saw from going into her skin.

Then a tool is used to separate the cast so we can pull her out. The cast needs to remain intact so it can be used to mold the new TLSO.

A few weeks later the base TLSO was completed. I forgot my camera the day of the fitting, but basically they put the tight white undershirt on like in the picture. The shell was placed on Rebekah and cut to fit her under the arms, far enough below the trach not to obstruct it, and high enough at the hips to allow her to sit in the TLSO. Then it was drilled to add airholes and the straps were added to it.

Here is the front of the completed TLSO. The round hole is cut for her g-tube so that the shell doesn't need to be removed for each feeding. The 3 straps are pulled so that the TLSO is tight enough to 'not move', but not so tight that it hinders breathing. We undo the lower straps during feeding just so we don't have so much pressure on her little tummy that it causes her to vomit.

The back goes all the way down past the sacram, but does not go too far to hinder sitting. The white sections with the holes are in areas where there are no pressure points. This adds a little more air circulation and comfort to the TLSO. However, if the casting had improved her scoliosis more, they would have stayed with a hard shell brace that would ultimately be more effective (but less comfortable). The lack of improvement is because the scoliosis is based more on hard bone curvature versus a muscular cause to the curve which is more 'correctable' over time.

So for anyone facing a casting scenario for your child's scoliosis, this should give you an idea of what you might expect. Although the process was time-consuming, it wasn't difficult on Rebekah. She rather enjoyed the warmth and confinement of the plaster session. She didn't care for the brace the first week or two and seemed to hold her breath. But we never really got much out of her than a little whining. She is now doing well in it, and can wear it pretty much all the time with no issues with her skin. We take it off for a few hours here and there for therapy and play time. It is supposed to be worn like 23 hours per day, but we have to balance physical development with reducing the curve progression. We will have to go through the process probably about once every 4 months or so, depending on her rate of growth. If her curve remains stable from the last uncasted x-ray statistics, then we will know we have a good plan in place.

Karen for First Lady!

2012-01-08T22:10:00.000-05:00

Michael and I made plans to attend our first ever Republican Party even - a meet and greet dinner with Senator Santorum at a local restaurant. The thought came to me about an hour before we had to leave that I should give him a note with a picture of us with him from last year and an invitation to his wife to join our online community. Here's my short note. I included several of Rebekah's info cards and a picture of our family.

Dear Mr. Santorum,

We had the pleasure of meeting you at the SOFT Conference last summer in Chicago!

A group of us have started a nonprofit called Trisomy Advocacy Group – a group meant to educate and help parents advocate for their trisomy 18, 13, and any other trisomies not currently represented by a national organization. Like you, we have had our share of disappointing encounters with the medical community, despite our full trisomy 18 daughter being 32 months old. We would love to talk to Karen or you about it! We would also love to give Karen some trisomy support. We have a great moms group on facebook, and she could even join under a different name if she didn’t want the attention. I cannot tell you how much we have learned from our moms group and how it has helped us to be better advocates. God bless! We will be voting for you!

Michael and Susan Budd

I held a folded paper in my hand waiting for the opportunity to slip it into his hand when I had my chance to meet him as he made his way through the room greeting everyone there. We arrived 40 minutes before it was scheduled to start - good thing as he started speaking only a few minutes later. I would have to wait until after his speech to get my moment.

As I struggled admist the crowd to see Santorum as he spoke, I can honestly say I felt an amazing presence in the room. I believe this man to be a man of character, speaking words of truth - someone who can bring integrity back to the White House. There is no candidate that I agree with 100% on every issue, but I would take someone who I agree with on 90% of the topics and who I know would be true to their word.

My excitement suddenly grew though! I didn't expect to see his wife, Karen, standing next to him. For some unexplained reason, my eyes suddenly welled up with tears as I felt an inexplicable bond with this woman. The letter I wrote was really intended for Karen, but I didn't dream I would see her at this event since Rick was making his grassroots tour across the Upstate area of SC and visiting location after location every few hours. I was so excited! I could now give the letter to Karen directly!

The speech finished and I continued to push my way through the crowd waiting for my opportunity to get to the Senator. But as I got closer, I saw Karen was no longer by his side! My heart dropped. I asked a ady who had been standing there if she knew where Karen went. She said she heard her saying something about the bathroom.

So I snuck off to the bathroom to 'corner' her despite Michael's urgings to give her some privacy. Besides her, that bathroom was empty! I patiently waited until she came out of the bathroom stall and washed her hands, then I made my move! I quickly introduced myself as a fellow trisomy 18 mom, my heart welling with a pride that only another trisomy mom would understand. I gave her the letter and quickly said a few words about our Trisomy Advocacy Group, Trisomy 18 Mommies group, and my family.

Karen started asking me questions and took a glance at the letter and my info card with Rebekah's picture. She recognized Rebekah! She said, "You have a blog, don't you? It's beautiful, I loved it!" My heart burst with pride and I suddenly had the urge to run home and add to my long-neglected blog! My writer's block had been broken! We chatted some more about advocacy and these words flowed from her mouth, "I have such a passion for this! [referring to trisomy 18 advocacy] I am so tired of doctors telling us our children are 'incompatible with life'."

She asked me about Rebekah's story. How did it start? What did the doctors do/say? What did we do with Rebekah? We chatted for long enough in the bathroom that someone from their security group finally knocked on the door, gave me an evil eye, and asked if she was okay. Before I could say a word, she said everything was fine. She gave me a hug and we left the bathroom. I paused her so Michael could snap a picture of us together. Then her son, Dan, gently told his mother they had to move on to the next location and were getting ready to leave. Michael just looked at me disbelieving I actually DID have the guts to stop her in the bathroom after all!

Let me tell you, I love this woman! She would be such a great First Lady for our country. She is as down-to-earth as Rick, not afraid to shake hands with those around her, and has such a kind heart. I am most honored to meet her, even though I thought it meant I missed my opportunity to speak with her husband. But she had my letter! So I knew he would at least get to see the picture from last summer of him with Rebekah, Michael, and I.

But my evening wasn't finished! I made my way across the room to our table, and I squeezed next to Senator Santorum as he was heading out a side exit door. I quickly stuck out my hand, and reminded him that we had met at the SOFT conference in Chicago last July. He gave me a hug, and asked about our daughter. He, too, gets my vote for the White House!

Quality of Life

2011-11-21T00:04:00.001-05:00

Before Rebekah was born, we were told many things about what to expect because of her diagnosis of Trisomy 18. None of them were positive. It went beyond describing her as 'incompatible with life'. At one point when asking how far should we go to help her, we were told to save our money because we have four boys to send to college. When requesting a caesarian section in case of distress, we were told no, that it was too dangerous to me (the mother) and that trying to help a child like Rebekah was not why that person became a doctor. When exploring how best to address Rebekah's early blue spells and apnea and looking at the option of a tracheostomy, we were told that we would regret our decision a year down the road. When asked for an explanation of Rebekah's brain MRI, we were told that Rebekah is noncommunicative and may develop a little bit, but will then start regressing and basically be a vegetable, so we need to stop doing to her and start thinking about how to just make her comfortable.

All of these comments and opinions were based on a false assumption... the assumption that Rebekah's 'quality of life' would be or is poor and that her existence negatively affects our family.

What is 'quality of life'?

a term used to evaulate the general well-being of individuals (subjective well-being)
what makes life worth living
the extent to which people's 'happiness requirements' are met

I like one definition from grdc.org: Quality of Life is the degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors. Enjoyment has two components: the experience of satisfaction and the possession or achievement of some characteristic, as illustrated by the expression: "She enjoys good health." Three major life domains are identified: Being, Belonging, and Becoming.

Rebekah had an appt last week with her Developmental Pediatrician. His name is Dr. Desmond Kelly and he is such a compassionate and understanding doctor. We updated him on all the new things Rebekah has started doing in the last 6 months.

He had this to say about Rebekah:

She seems to be genuinely happy.
She explores her environment.
She entertains herself.
She has self-esteem and looks pleased when she accomplishes a task.
Her highest area of development is her social skills.
She recognizes and reacts positively to her family.

I said to him, "Wouldn't that constitute a good 'quality of life'?"

His response was agreement. "She obviously loves her family and brings you great joy. That is what it is all about."

How well stated! If only more doctors would look at 'quality of life' with the same view! And if you go back to the definitions of quality of life - I think Rebekah has mastered all the areas from her view: well-being, happiness, being, belonging, becoming, loving. She is, to us, all that God meant her to be. And I would say her quality of life is better than most people in the world. Even more importantly, she makes OUR quality of life better too.

Disabled Children Have So Much To Teach Us

2011-10-17T13:02:00.003-04:00

The irony of pro-life/pro-choice in politics ends up in this generalization -

The Republicans are predominantly pro-life, but do support death penalty and don't support the programs that would be necessary to help those born with conditions requiring long-term care (in other words - people that won't be productive tax-paying citizens). So let's save all the pre-term and unwanted babies, but do nothing to help them...
The democrats are pro-abortion (yeah, yeah you can say pro-choice if you want to), but don't support death penalty and do support programs that help those born with conditions requiring long-term care and even support programs for a percentage of people out there that just don't want to be 'productive members of society'.

So one keeps babies alive but doesn't support a lot of funding for helping them, one supports killing babies, but entitles everyone to services. Yes, this is a generalization! I obviously don't think it's quite so black and white, but I find it ironic none the less!
There is one republican politian (Rick Santorum) who 'gets' the value of all lives. The Santorums have dealt with infant loss of their son Gabriel (Letters to Gabriel) and currently have a 3 year old trisomy 18 girl named Bella.

Here is a recent article on Santorum: Disabled Children Have So Much To Teach Us

At first, Santorum was emotionally detached from his disabled daughter but, when she faced her own battle for life, he suddenly realized, “This child…can do nothing but love me.”
Santorum observed, “That’s me with the (Heavenly) Father—I am so profoundly disabled in His eyes.”

The picture of Senator Santorum posing with Chloe Kondrich (a Down's Syndrome child - trisomy 21) says more than words ever could. His broad grin shows that he has come to realize the worth of every human life, no matter what challenges that life may face. (from Disabled Children Have So Much To Teach Us)

I am so grateful for experiencing the joy of having Rebekah. And, although I may not agree with all of his politics, I do believe that he would compassionately protect rights and services for children like Rebekah (even though she will most likely never be a productive member of society). I think he will be compassionate toward all people, because he has come to realize what all of us with special needs children realize...that each life is valuable. And he is so right in observing that, in God's eyes, we are all profoundly disabled.

Tribute to Caleb (3/20/09 - 8/29/11)

2011-10-09T01:30:00.001-04:00

As little as 2-3 years ago, there were very few resources online to help families faced with the diagnosis of trisomy 18/13. There were even fewer active resources that helped CONNECT families of LIVING children. While I was pregnant with a prenatal diagnosis of trisomy 18, I needed that hope and I needed to talk to 'experienced' trisomy families so I could educate and prepare myself. It was so hard to find living kids. So I started a group called Trisomy 18 Mommies* on facebook to connect all of us, no matter where we were in the trisomy journey, and suddenly I started finding trisomy families, many with living kids that provided me with so much hope! Online, the trisomy families share fears, milestones, illnesses, frustrations, tears, joys, friendship, knowledge, and grief. We share things our friends and families just don't understand, because they are not on the same Journey.

I have a very special bond with one family in particular - the Adamyks. Jeannette and I found each other on facebook as we were both beginning this trisomy journey. Jeannette and I quickly started sharing more than just the trisomy journey, we started sharing life together. The Adamyk's son, Caleb, was born a month before Rebekah and also with full trisomy 18. Jeannette and I may have developed a strong bond, but I always felt like Rebekah and Caleb were kindred spirits too. Caleb is the 'groom' in Rebekah's 'wedding' pictures, and they look a lot alike and share many mannerisms.

Caleb went to be with Jesus on 8/29/11. I have to be honest, I have had a very rough time this past month. I haven't been interested in my normal activities, it is a struggle to get through the days, and I have been having bad dreams and anxiety. I have wanted so much to blog about Caleb's funeral and my feelings through this grieving process, yet I still cannot put it into comprensible words. I know my pain isn't anywhere near that of Jeannette and her family. Yet my pain is enough that it has been debilitating. Oh how I hate that one of my best friends has to go through this part of the 'journey'... and I hate that any of us have to even think about facing it one day. But through our friendship, and by sharing this journey with Jeannette, I have seen the depth of her love, the depth of her commitment, the extent to which she would go to help her son, and how to gracefully and lovingly one can face the worse nightmare of any mother - the death of your child. The pain and suffering doesn't negate the joy and blessing of having a miracle child that defies the odds. It doesn't make us regret choosing life.

Caleb's legacy and what he means to the trisomy community:

Caleb had the most beautiful smile that melts everyone's heart. He showed that having a special child could be full of happy moments.
He gave us hope to not give up on our children, but to fight for them.
Caleb became an encouragement to other families faced with the same diagnosis, and the Adamyks showed us how to be advocates for our children.
Caleb proved that life is more than what you accomplish by worldly standards. Trisomy 18 children are worth fighting for. Life isn't about striving for perfection or success, but about loving and living, and enjoying each day.
Caleb helped bring people closer to God and gave us a glimpse of what unconditional love means - suffering without complaint while loving those around us, just as Jesus did.

Before Caleb went to the hospital in what would be his last days, Steven Adamyk twirled him around outside in the rain, just enjoying a special moment with his special son. This beautiful moment reminds us that "Life isn't about waiting for the storm to pass, it's about dancing in the rain."

Jer 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Although it is hard for me to see and accept this now, I know in my heart its true and I am praying daily for the Adamyks and for all my trisomy friends that have lost their child.

Caleb lived in Ocala, FL. Ocala Star Banner has been following Caleb's story since birth. Here are the links to some of the beautiful pieces done on him:

3/19/11: Caleb turning 2 amid support for Edwards syndrome kids
8/30/11: After celebrating his 29th month of life, Caleb dies at area hospital
9/7/11: Boy's spirit, love honored during celebration of life
10/3/11: Caleb Adamyk's Story
Ocala.com photo gallery from all of Caleb's articles
A complete list of his articles can be found here

Michael Robinson (a family friend of the Adamyk's) made this video: Celebrate Everything - A Tribute to Caleb.

Caleb's Celebration of Life Service:

Caleb Adamyk's Story:

Come To Jesus by Chris Rice

Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!

Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!

And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!

O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!

Rest in Peace, Sweet Caleb. We love and miss you so much!!

*Trisomy 18 Mommies is one of many online resources available to families wherever they are in the trisomy journey. We currently have about 540 members at all different points in 'the journey'. Contrary to the name, the group is also for dads, family members, etc and encompasses families facing trisomy 18, 13 or any similar genetic disorder considered 'incompatible with life'. However, Facebook will not let us change the group name to better reflect the composition of the group. :-) If you are facing a diagnosis of trisomy, already have a trisomy child, or have lost a trisomy child, we offer a community of compassionate members that 'get it'. Feel free to join us.

A Birth Healing Blessing

2011-09-20T18:54:00.000-04:00

Matthew 5:4 Blessed are those who mourn, for they will be comforted.

I am on a list serv group for trisomy medical issues. You can find it here and join one of the trisomy list serv communities. I mostly just read the posts and glean as much knowledge as I can from seasoned families. Every now and then something special catches my eye and today was one of those days.

I have been very sad the last few weeks at the loss a good friend's trisomy 18 son ( a dedication blog to be posted very soon!). This event happened as about 10 other trisomy children also passed within a few weeks. There are several children in the hospital now, fighting for their lives.

Although the following poem was written specifically for late-term miscarriage, stillbirth, or neonatal death, I am dedicating this to all my friends who have lost children. It is beautiful.

I love you, dear friends...

A Birth Healing Blessing*

Blessed sister, beautiful one

with broken wings.

Your journey is a difficult one

that no mother should have to endure.

Your path is steep, rocky and slippery

and your tender heart is in need of gentle healing.

Breathe deeply and know that you are loved.

You are not alone,

though at times, you will feel like a

desolate island of grief

untouchable

distant.

Close your eyes.

Seek the wisdom of women who have walked this well-worn

path before you, before, and before, and before you yourself were born.

These beautiful ones

with eyes like yours

have shared your pain, and

weathered the storms of loss.

You are not alone (breathe in)

You will go on (breathe out)

Your wings will mend (breathe in)

You are loved (breathe out)

~ Mary Burgess

Author, *Mending Invisible Wings*, a healing journal for

mothers following the loss of their baby through late-term miscarriage,

stillbirth, or neonatal death.

Where Miracles Happen

2011-09-18T14:26:00.003-04:00

While Rebekah was in the hospital for a month in June, we got to participate in a special being filmed about our local Greenville Children's Hospital. The WYFF 4 one hour special is called 'Where Miracles Happen'. It is now posted on the news station's website in seven parts, Rebekah is in Part 6. Be sure to check out her starring role: Where Miracles Happen: Part VI - Video - WYFF Greenville! We will be selling foot print autographs for anyone interested! ;-)

Here are some other pictures from that day as each of the dogs visited Rebekah. She was so funny because she wouldn't pet any of them with her hands, but she was most definitely petting them with her feet! As each dog visited, she got more bold with her foot moves. I love my sweet little girl...

Rebekah is thinking about reaching out with her left hand.
She is very defensive of her hands and doesn't like to use them a lot.

She decided to switch to other body parts because she didn't want to stretch out those arms. Here she is deliberately useing her knee to pet a dog.

Because Rebekah was obviously trying to use her feet over her hands to interact with the dogs, I removed her shoes and socks so she could get direct contact. Now she is really getting into it and extending her foot out the whole way!

Here's Boomer from the video link. Rebekah was rubbing him with her foot.

This dog was so funny. He came in and licked her face.
She thought it was so funny she decided to stick her foot in the dog's mouth for a lick.

My Road To Advocacy...

2011-09-17T22:34:00.001-04:00

I was selected this summer to participate in a federally-funded program called 'Partners in Policy Making' which is a leadership training program that helps family members learn the history of disibility law and how to become an effective advocate. Here in South Carolina, it is run through a group called Pro Parents, and they select about 15-20 people a year to participate. I get to travel to our state capital for two day training sessions that will occur over five months, learn about the law-making process at local, state and federal levels, meet speakers who are experts in topics essential to advocacy, and hopefully learn how to effectively advocate so I can better help Rebekah and others like her! Anyone can petition to participate in the program, and if it is not available in your state as a hands-on learning process, there are free online tutorials at the Partners in Policy Making website that cover the technical information learned during the training.

I FINALLY got around to creating and ordering my own personal advocacy cards in August! It has only taken me a year of talking about it to finally get it done. The hard part was coming up with exactly what I want the cards to convey in such a small space. Because my passion is for advocating for children with trisomy 18, 13 and similar conditions, I chose several organizations that support the trisomy journey - especially those in the journey with living children. I obviously couldn't include every organization, but I can say that these organizations make a difference in the lives of families that choose life for their trisomy kids. Of the amount of funds that goes into these organizations, almost all of it goes right back out to supporting families - you can see the fruits of their labor. The list of people they have helped is long, and their leadership is full of integrity. I have been personally helped by all of them -

Trisomy Advocacy Group helps give a voice to those who have none, and helps connect new parents to parents willing to support and help them face doctors and hospitals not trisomy frirendly.
Noah's Never Ending Rainbow helps families with living children and bereaved parents who need a little financial help. They helped fund 14 families attending the SOFT conference this past summer - we were one of them.
Support Organization for Trisomy (SOFT - trisomy.org) provides a way for trisomy families to connect - no matter where they are in the journey. They put out quarterly publications with lots of useful medical information, and have medical advisors on board that are 'experts' on trisomy kids. There is an annual conference that is incredible - for both those with living children, and those who have lost children. It truly is a wonderful support organization.
Hope for Trisomy offers comforting Gemma's Bears and Payton's bears to trisomy families, funds research projects, and helps advocate on behalf of these children.
There is another organization that I wish I would've added - Prenatal Partners for Life. They have helped countless friends of mine, and the founder recently lost her full trisomy 18 son. They support families with adverse prenatal diagnosis that choose to carry to term.

This is the front of the card...

...and this is the back side.

There are many other organizations that support the trisomy community, I listed them in this blog entry months ago. But the ones that made it to my cards are the ones that have supported me most in my journey.

I would really love to be able to go to medical conferences, universities, and any place else where I can show off Rebekah and her trisomy friends and explain that life-limiting does not mean incompatible with life, nor does it mean there is no quality of life. These children are special and have many things to teach us. Rebekah and I are looking forward to our advocacy opportunities and how we can make a difference for trisomy 18 awareness. I start my Partners in Policy Making classes in October - and I can't wait!

An Unbelievable Appointment...

2011-08-04T20:16:00.000-04:00

I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.

I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant. Yet I have found online parents that have had helmets for their trisomy two year olds.

I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function. There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)

So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)

I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.

Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.) Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'

REALLY?!?! How would you feel if your child's doctor told you this?

Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."

I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...

What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart? I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.

A Nineteen Month Reprieve Ends... (PART II)

2011-06-10T09:41:00.001-04:00

Friday 6/3 - It is the day after surgery and Rebekah continues her pattern of sleeping. Even though I haven't seen her awake for more than a few minutes in 5 days, I still am not too worried. Her blood pressure had come down and she looks more comfortable and peaceful than she has in a long time. But today is another challenge for us...

While in the OR, many attempts were made to get a central line into Rebekah. This is necessary for two reasons. 1) She has been without nourishment for over 5 days; and 2) The infectious disease doctor wants a central line for her UTI antibiotics. Both of these things cannot be done in a regular IV because Rebekah's veins are small and prone to 'blowing'. Dumping these things into her tissues can cause another set of problems. So we had an appointment with the PICC team to put in a PICC line. The 'Peripherally Inserted Central Catheter' would go up her arm, across her chest, and down into the vena cava artery that goes into the heart. This procedure is done under anesthesia using special ultrasound equipment, and this would be the second day in a row of anesthetizing Rebekah. The PICC team was also nervous because a central line from the groin area is typically easier to get into place than a PICC line from the arm.

Well, the doctor performing the procedure is Dr. DeVane. He and his team got the PICC line in first try! I was ecstatic and told him, "You are DeMan for DeVeins!" That made him smile. :-) Everyone was thrilled for this victory, and Rebekah did awesome under sedation. They said that trached kids typically need bagged during the procedure, but all she needed was a little blow by oxygen while under and she came out of it like a champ!

Rebekah - right after the PICC line procedure, still asleep from the anesthesia.

Saturday 6/4 - First day post-op that Rebekah has finally started 'waking up' and showing us those beautiful eyes and a few fleeting smiles! She started CPT (chest percussion therapy) three times a day, which is pretty standard post-op to help keep the lungs clear. She's in love with Respiratory Therapist, Josh, and he was the recipient of her first genuine sustained smile in over a week! We also finally started her TPN (Total Parenteral Nutrition) feeds. Regular IV provides the fluids and electrolytes you need to stay hydrated, but it does not provide your body with nutrition, which is the purpose of TPN. TPN puts directly into your blood stream dextrose, amino acids, sodium, potassium, magnesium, calcium, phosphorus, and lipids (fats). Of course, dumping this all directly into your blood stream also has its own set of risks as it taxes your liver and can cause blood clots. So it contains heparin to help with clotting and daily labs are drawn to tweak the TPN 'recipe' and watch for signs of liver toxicity and nutrient imbalances. The goal is to get her off the TPN as soon as possible, but the gut has to start working first. They expect it to be 4-7 days post-op for her system to be working again (inflamation clear and motility to be restored).

Saturday was also a great day for visitors! Rebekah got to see her brothers, her home nurse, and a special friend that is a doctor, but not one of her GHS doctors. :-) This is the first day in a week we've gotten her to interact.

Rebekah with her Nurse Becky

Rebekah with her special friend, Dr. Putnam

Mommy finally getting to hold Rebekah. I had been afraid to hold her since surgery because I didn't want to hurt her tummy.

Rebekah's brother, Isaiah, giving her a big kiss. Her brothers miss her a lot!

Sunday 6/5 - Sunday started with a more fussy baby. Her stomach output doubled from yesterday and I think she is finally starting to feel the pain. Our only options for pain have been tylenol and morphine. Obviously, we don't want to use a lot of morphine since it slows motility and only works for a few hours. We were not allowed to use any motrin products because of her UTI (and possible kidney infection). But thankfully, her urine has been clean for several days, so they finally gave us the OK to use toradol (an effective motrin product that comes in IV form). We can only use this for a short period due to liver toxicity, but it did the trick and seemed to get her over the pain hurdle!
Today we've had our usual bloodwork, and abdominal and chest x-rays. Chest is clear and ab x-rays still show barium just sitting in her system going nowhere. No poop or evidence of bowels 'waking up'. We are pretty much in 'wait' mode...

Monday 6/6 - More waiting... waiting for her bowel to wake up, waiting for her to poop, waiting for her incision to heal... Daily blood work leads to a little tweaking of TPN feeds. We did have a first very small bowel movement, but no real good bowel sounds, so that is the extent of today's excitement. I put a call out to my friends to sit with Rebekah on Wednesday this week so I can spend a day with my parents. They have to leave on Saturday. I was overwhelmed by the response of volunteers! Right now, we are in a good spot, and the calm before the storm...

Rebekah's tummy must be feeling better because she was pulling her legs up and kicking away!

Dear Lord, Thank you for making me feel better. Now please help me to poop today! Amen

CAMP GHS -
Here is my story to tell for this part of our 'Camp GHS' (Greenville Hospital System) stay -
The one thing that makes me very sad about being in the hospital is the fact that we are missing our one true summer family vacation that we had scheduled a year ago. It is to a place called Camp New Hope near Boone, NC. It is for children with life-threatening disorders and their families. We went last year and had so much fun! It is a great time of respite because they fully stock your kitchen for you and pretty much take care of everything. We have use of a Kubota to explore the 160+ acres of mountain trails, there are canoes, tubes and fishing poles for water fun, and all kinds of activities to keep us occupied. We really needed this respite time as a family.

One of the days Rebekah was still out of it, we had a nurse that was pretty hands off. She pretty much told me the the diapers and general needs were my job. I chatted with her a little bit and was explaining how we had to cancel our vacation to Camp New Hope. She asked me what Rebekah would even do there (that she couldn't do at home, I assumed). And she later asked my husband if she 'does anything'. I feel really sorry that she is a pediatric nurse and she doesn't have the compassion or understanding to take care of special kids without insulting their families. I guarantee that Rebekah can do plenty, and she steals the heart of all who meet her! But even if she DIDN'T, that is not really relevant to the care she should receive.

That coupled with my sadness at missing Camp New Hope had me really bummed. But I really started thinking about the timing of events and realized that God is watching out for us always! Had this all occurred when we were in the middle of the NC mountains, I probably would've tried to treat her longer at 'home' before taking her to an ER. And I am pretty sure there is not a children's hospital anywhere near the camp. So we probably would've ended up at a general hospital with no peds focus. If we managed to get to a children's hospital, it probably would have been out of state and with doctors who don't know anything about Rebekah other than "she has trisomy 18". It really could've been a bad situation, and just the logistics of how we would manage the kids boggles me. But instead, we had a week where grandparents were able to come help us, she stayed local with doctors who already know how amazing she is, and our life wasn't thrown upside down by being out-of-state. Praise God for this stay at Camp GHS! It may not be where I want to be, but I know He has His hands on the situation.

Blessings and the Brave Little Soul

2011-06-09T15:16:00.003-04:00

On this 'trisomy journey', I have learned so many things, and have been subjected to many viewpoints that differ from mine. The most common argument used for why children like Rebekah should not be given a chance is that they will endure a lifetime of pain and suffering. Thus they are terminated or denied medical care after birth because prolonging their life would be irresponsible and cruel.

I think using 'pain and suffering' as an excuse to terminate pregnancies or deny medical care is just plain crazy. While I do not deny that my daughter feels pain when she has to go through medical procedures, simply seeing her smile (even in the midst of an uncomfortable situation) speaks volumes about her own will and drive to live. If I were to personally get cancer, or have a debilitating illness, I can guarantee that I would endure the 'pain and suffering' of treatment in order to be here for my family. For most people, if their loved one requires intervention to live, we do what we can to provide it. If a 'chromosomally-normal' child were born, but had severe obstructive apnea or a life-threatening heart defect, it would be considered abuse not to seek treatment to correct the problem. Yet we sell the idea that treating trisomy 18/13 kids the same way is irresponsible.

People also use pain and suffering as an excuse to deny that there is a God, or that God is good. I believe that God uses times of trials and suffering to make us lean on him. He gives us strength through our weakness, and it can mold us into better people - compassionate and loving and equipped to show Jesus to the world. There are so many verses in the Bible that speak about pain and suffering. Here are just a few that speak to me:

“My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 2:9)
“This suffering is all part of the work God has given you. Christ, who suffered for you, is your example. Follow in his steps.” (1 Peter 2:21)
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” (John 9:3)
“Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us.” (2 Corinthians 4:16-17 / The Message)

This song is an incredible reminder that Blessings can come in the pain and suffering of this world. It is followed by a story called "Brave Little Soul". May they both bring your peace and comfort!
Susan

Laura Story - "Blessings" Lyrics

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Here is another perspective on why suffering happens:

Brave Little Soul
By John Alessi
Not too long ago in Heaven, there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, “...Why do bad things happen; why is there suffering in the world?”

God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean?”, he asked. God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”

The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their hearts, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity.”

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!”

God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you, and suffer along with you, far beyond the others. They have already chosen a name for you.”

God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”

Thus at that moment the brave little soul was born into the world, and through his suffering and God’s strength, he unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Love changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

A Nineteen Month Reprieve Ends... (PART I)

2011-06-02T20:34:00.001-04:00

After going an amazing 19 months without a hospitalization, we finally broke our medical reprieve. On May 30th, Rebekah started vomiting and was switched to Pedialyte to give her stomach a rest. On Memorial Day, she spent the day either sleeping or vomiting. She always tolerates pedialyte, so this was a different experience. I figured she had a virus. But after over 8 hours with no wet diapers, I called the pediatrician and they told us to head to the ER for IV fluids.

We spent 8 hours in the ER until they decided to admit Rebekah to the Peds Floor at Greenville Memorial Children's Hospital. They started Zofran to stop her vomiting in the hopes we calm her stomach enough to restart at least Pedialyte. But after running standard blood and urine cultures, it was determined that Rebekah had a pretty significant UTI. We still didn't know the strain, so they put her on IV Rocephin, and we figured in a day or two she would be back to normal. But it didn't go that way...

Because of the concern of the UTI extending to her kidneys, we did an abdominal ultrasound on 5/31. It showed no major issues of Rebekah's kidneys or liver. By Wed morning, Rebekah's tummy was becoming visibly distended. Rebekah continued vomiting despite the zofran, and was starting to vomit some bile here and there. All of this was a mystery since her blood work did not show anything significant (outside the UTI), and her white blood count numbers were actually going down.

Michael kissing Rebekah during the Upper GI Study

An abdominal x-ray was ordered which showed a blockage in the smaller intestine. Because the doctors weren't sure if it was a complete blockage, they ordered an Upper GI Study to look at how things were digesting. To complicate matters, Rebekah had been on IV fluids since Monday evening, on IV Zofran for vomiting, and continued to vomit at least once every 3-4 hours. Her stomach was becoming more and more distended and the amount of bile backing up into the stomach was becoming significant.

Rebekah's distended tummy on Wed 6/1

For a period of about 12 hours, we attempted to administer multiple doses of barium to Rebekah for the upper GI x-ray series showing the progression of the barium through her tract. She kept vomiting the barium along with larger and larger amounts of bile. What little passed beyond the stomach was going no where. She was becoming more agitated and unconsolable. She absolutely did not want to be touched.

Rebekah's tummy on 6/2. The g-tube button was being pushed by so
much pressure that it was sticking out was past the stomach.

After the last xray at 7am Thu morning (6/2), her stomach was so bloated it was hard and her g-tube button was actually pushed up out of her skin. The pediatric surgeons decided that we were getting to a critical point and could not waste time trying different tests. We signed the paperwork, then I brought up a very sensitive issue with the surgeon.
I said, "I am sure you don't need to be told this, but if Rebekah codes during surgery, or there are any major issues, you are to do every thing the can for her."
Well, his response pleasantly surprised me. "When we cross the door into the OR, we do absolutley everything we can for our patient. Even if they had a DNR, it would stop at the door and be ignored."
(Rebekah does NOT have a DNR (Do Not Resuscitate order), but his point was in the event of an emergency, they treat everyone equally. How refreshing!.

Dropping Rebekah off at the OR.
Michael had to be at home for Isaiah's Kindergarten graduation.
It's tough having to 'choose' between your children. :-(

So Rebekah was taken to 'emergency' surgery Thu morning around 9:30 am. We met with the surgeon around 12:30p for a post op consultation before seeing Rebekah. She did great during surgery and they found and fixed the problem!

Rebekah's tummy when we picked her up post-op. Looks so much better!
It will continue to shrink as she recovers from major abdominal surgery.

Rebekah once again becomes a medical anomaly and defies statistics by having a Meckel Diverticulum present in only 2% of the population. This extra section and about 3 inches of surrounding intestine were removed along with several adhesions. They threw in an appendix removal for free! LOL. And to make things even more interesting, her Meckel Diverticulum didn't act 'normally' by bleeding, but inflamed the intestines enough to wrap around it causing a major obstruction. We had MAYBE another day before this would most likely have turned into periotinitis and/or necrotized (dead) intestine and become a major life threatening problem.

Sweet Rebekah looking much better after surgery.
Her face is relaxed and her lips actually have color.

Her GI doctor can't wait to see if this totally changes her digestive system issues! This may have been the culprit behind a lot of her early digestive system problems.

I want to end Part I of this story by sharing the story of Rebekah and her brother, Elijah. Rebekah has been miserable for this past week. She hasn't smiled at Mommy, Daddy, or even her Nurse Becky. She has been very grumpy for the nurses. But when her big brother showed up Wed night, she cracked a grin, touched his face, and even held his hand.

While that is a 'nice' story, I am telling it because there is a false assumption that trisomy kids are vegetables that are a burden to take care of and who will never know you. This is so far from the truth! Every trisomy 13 & 18 child I've met has a happy demeanor, a loving soul, and most definitely a recognition of their family. They are a special blessing, and sent to teach us about courage, hope, and unconditional love. I thank God so much for entrusting Rebekah to our family. It is where she belongs...

Rebekah and Caleb

2011-05-15T18:34:00.001-04:00

In March Rebekah and I had the great privilege to visit her trisomy 18 friend, Caleb, for his 2nd birthday.

Here are a few more photos from our 'wedding' between Caleb and Rebekah taken by Ocala Star Banner journalist, Jacqui Janetzko. Thank you, Jacqui, for these beautiful memories!!

My friend, Jeannette (Caleb's Mom), is really blessed because their local newspaper is following Caleb's life story. They have followed his birthdays and major events, and will be posting monthly articles on life with a special needs child. In addition, the Adamyk's have been asked on several occassions to give a presentation at the local university to med students on trisomy 18. What an awesome way to educated these students so that they will hopefully manage their future trisomy patients on a case-by-case basis, and not under the assumption that all children with trisomy 18/13 are incompatible with life!

I am so proud of Jeannette and so happy for the positive impact Caleb is able to make on others! And I am so glad that her local media is sharing Caleb's story! I wish our local newspaper or news stations would find a message of hope like this as something newsworthy...

Stroll for Hope - TEAM BUDD ZOO

2011-05-15T17:55:00.001-04:00

TEAM BUDD ZOOBack: Michael & Susan
Front (left to right): Isaiah (6), Jeremiah (8), Elijah (10) holding Rebekah (2), Josiah (4)

Please support TEAM Budd Zoo in a Stroll for Hope to raise money for SOFT. Your tax-deductible donation of even a few dollars will go to help educate both families and the medical community about trisomy 18, 13 and related disorders! Read below for more information...

When I was pregnant with Rebekah, the majority of the information I got from doctors and online resources were full of doom and gloom. We prepared for the worst. But when Rebekah ended up living and thriving, I was left without information on how to care for her. One of the few organizations I've found that actually has medical advisors and trisomy experts, as well as an international registry of trisomy 18/13 families, is Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) - a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children.

We are excited - all seven members of the Budd Zoo will be attending the SOFT Conference in Chicago in July! The conference will provide a free medical clinic for the SOFT kids, and Rebekah will be able to consult with 3 specialists to get additional advice on her care.

As part of the conference activities, we will be participating in a Stroll for Hope event to raise money for SOFT. We are taking pledges/donations for our stroll around HOPE Hospital in Chicago, IL. Your donations are tax deductible and go to a great organization! And thanks to SOFT, our family has received a scholarship to help us offset the conference costs, and we want to be able to give back so other families can attend in the future.

My plug for supporting SOFT (trisomy.org):
I encourage anyone facing a journey with a SOFT child, including the medical professionals that will care for them, to join this organization because of all the things they can provide:

Help and support for families;
Medical advisors who are experts on trisomy 18/13 kids;
Materials available for care of trisomy kids;
SOFT Times, a quarterly magazine full of informative articles, life experiences, practical information, summaries of latest research articles, tons of inspiring pictures of living and thriving children, and much more;
New family packet that is a great resource.

I have found their materials to be awesome resources for our family and for Rebekah's doctors. The books include info like typical problems, recommended medical treatments, and growth curves for trisomy kids.

Most important - this is a volunteer run organization! Even the medical advisors are volunteer. All money donated to SOFT goes to subsidize conference costs, create informative materials for families, education opportunities, support of trisomy-related studies, and so many other good programs! It DOES NOT pay for salaries or projects in conflict with the purpose of the organization.

Thank you for your love and support of Rebekah, and children like her!

Little God Moments...

2011-05-07T01:24:00.000-04:00

In the hustle and bustle of life with 5 kids, a calendar full of activities from early morning until late night, and sleep deprivation, I sometimes find myself getting frustrated with life...feeling a little out-of-control and discouraged.

In an attempt to get that under control, I am trying to do a better job of clearing my calendar of nonessential activities, focusing on daily quiet time (with the help of my new NLT One Year Chronological Bible), and appreciating my very blessed life more. But I struggle daily with being focused on myself and not focused enough on what God is doing or wanting from me 'today'.

Today's reading included a passage from Psalms 9:1-2.

I will praise you, LORD, with all my heart;

I will tell of all the marvelous things you have done.

I will be filled with joy because of you.

I will sing praises to your name, O Most High.

So it shouldn't come as a surprise that I had a moment that made me want to tell everyone how good my God is! It was a moment that really encouraged me and made me look at the last few weeks to see how God is always working in my life, even when I am not giving him my best. I wanted to capture today's moment and one other recent moment so I can remind myself and others that we experience these little God moments all the time - we just need to take the time to recognize and rejoice in them!

So here's my God Moment...
Michael is out of town and I needed to get all 5 kids to a piano recital practice at 6:45p. If I cooked, it just wasn't going to happen. So thanks to having some free kids meal coupons for Chick-fil-a (and thanks to Bell's Crossing Elementary and our Woodruff Rd Chick-fil-a), we had dinner on-the-cheap. That alone is a blessing! :-)

A couple sitting near us in Chick-fil-a were driving through town and decided at the last minute to stop at this particular Chick-fil-a so that the boy with them (I didn't catch if he was their son, grandson, nephew...) could play and hopefully find someone else to play with for a few minutes before they continued on. The child was thrilled to see my 4 boys there! They asked me about Rebekah and we started talking. They put two and two together and realized that Rebekah is the unborn baby they had been praying for over 2 years ago and continue to pray for, thanks to learning her story from their neice who attends my church. What a small world! And what a blessing for them to meet the little miracle baby they had faithfully been praying for! They were surprised how well she looked/acted for being considered 'incompatible with life'.

In addition to getting to meet Rebekah, they were also able to give me some important advice and a promise for future help so that I might be able to have a better chance of getting some media coverage for one of our future local trisomy family meetups. We were both encouraged and excited about this God-orchestrated moment!

God Moment #2...

So as I was putting these thoughts together, another obvious God moment jumped out that happened just last weekend.

Saturday mornings, at the moment, are filled with soccer games. Last Saturday, we headed to Yogurt Mountain to socialize/celebrate after Isaiah's soccer game.
The coach's wife, Lisa, was not planning to go to Yogurt Mountain this day because it was on the other side of town and she wanted to get some things done. She really did not want to go. But at the last minute, she just felt the urge that she needed to go.

When we got there, I pulled Rebekah out of her car seat with a feeding tube still attached to her, and managed to totally break off the button mechanism that allows the feeding tubes to attach and lock into her feeding button. It was going to be impossible to feed her without getting the tube changed out, and the type she has (AMT Mini-One Non-Balloon Button) needs to be changed at the Peds Surgery office or, in case of a weekend/after-hours, in the ER!

The dilemma I had was that Michael, Elijah, and Jeremiah were getting ready to head out of town for a hiking/primitive camping trip that they had been looking forward to for weeks. And if they stuck around for my unplanned ER trip, their weekend plans would be ruined. I had Josiah(4), Isaiah (6), and Rebekah. Just how fun could a long ER trip be with a 2, 4 and 6 year old? Also, I did not have her backup g-tube, it was 20 minutes at home and the opposite direction of the hospital. The hospital is 30 minutes from our house. So I am looking at about 1 1/2 hours of driving time too.

I decided to sit there and at least enjoy some frozen yogurt until I figured out the least painful course of action. Well God bless Lisa, because she offered to take Josiah and Isaiah to their house (knowing that I had a long drive and wait ahead of me, and it would be hours before I could pick them up). What a total blessing to me, AND to my boys!! And the greater blessing is that Lisa recognized that she was meant to be there, at that time, for that purpose. And she was so gracious and insistent in her offer that I totally felt it was from her heart and that I was in no way putting her out or taking advantage of her. It was so great to be able to send them off with that family knowing that my kids would not be bored to death in the ER, that someone actually wanted to watch them, and that I did not ruin the weekend for Michael and my two oldest boys! And as I texted Lisa several times with updates from the ER, she continued to assure me that everyone was fine and she was happy to help out.

I was at the ER for quite some time, but I managed to pick up my boys just right before Lisa and her family had a scheduled activity. What God-timing for the whole day!

There are so many other little moments in my life that clearly show God's hand. I need to take the time to recognize them, appreciate them, and thank/praise God for such moments!

God is good, all the time! And all the time, God is good!

Recall Notice

2011-04-26T17:44:00.000-04:00

RECALL NOTICE

The Maker of all human beings (GOD) is recalling all units manufactured, regardless of make or year, due to a serious defect in the primary and central component of the heart.
This is due to a malfunction in the original prototype units code named Adam and Eve, resulting in the reproduction of the same defect in all subsequent units. This defect has been technically termed "Sub-sequential Internal Non-Morality," or more commonly known as S.I.N., as it is primarily expressed.

Some of the symptoms include:
1. Loss of direction
2. Foul vocal emissions
3. Amnesia of origin
4. Lack of peace and joy
5. Selfish or violent behavior
6. Depression or confusion in the mental component
7. Fearfulness
8. Idolatry
9. Rebellion

The Manufacturer, who is neither liable nor at fault for this defect, is providing factory-authorized repair and service free of charge to correct this defect.
The Repair Technician, JESUS, has most generously offered to bear the entire burden of the staggering cost of these repairs. There is no additional fee required.
The number to call for repair in all areas is: P-R-A-Y-E-R.
Once connected, please upload your burden of SIN through the REPENTANCE procedure. Next, download ATONEMENT from the Repair Technician, Jesus, into the heart component.

No matter how big or small the SIN defect is, Jesus will replace it with:
1. Love
2. Joy
3. Peace
4. Patience
5. Kindness
6. Goodness
7. Faithfulness
8. Gentleness
9. Self control

Please see the operating manual, the B.I.B.L.E. (Basic Instructions Before Leaving Earth) for further details on the use of these fixes.

WARNING: Continuing to operate the human being unit without correction voids any manufacturer warranties, exposing the unit to dangers and problems too numerous to list and will result in the human unit being permanently impounded. For free emergency service, call on Jesus.

DANGER: The human being units not responding to this recall action will have to be scrapped in the furnace. The SIN defect will not be permitted to enter Heaven so as to prevent contamination of that facility. Thank you for your attention!

- GOD

P.S. Please assist where possible by notifying others of this important recall notice, and you may contact the Father any time by 'Knee mail'!

Because He Lives!

SC Trisomy 18 Meetup and Birthday Party

2011-04-18T17:30:00.002-04:00

Rebekah at 22 months

We will be celebrating Rebekah's 2nd birthday this week! Unlike her grand 1st birthday affair, the guest list is much smaller and the venue is our backyard! However, the guest list is amazing - trisomy 18 families from possibly 4 states coming to celebrate and meet together for support! Kids will range in age from 1-10 years old! We will also have a child with a 2q microdeletion, a chromosome 15 partial deletion, and possibly a trisomy 9p there as well.

Part of my passion since having Rebekah is to raise awareness of Trisomy 18 and similar conditions, and to EDUCATE the medical community that these children can thrive and that they deserve a chance. Each one should be evaluated as an individual, and not as a label - "incompatible with life". So I sent out the following note to four local TV stations and one local newspaper hoping that someone would consider coming out and helping us to raise awareness.

Hope it works! Let me know what you think or how I could've made it better (for future events).

On Saturday, April 23^rd, there will be a gathering of children with Trisomy 18 – a condition considered ‘incompatible with life’. These children will range in age from 1-10 years old – pretty good for someone told they shouldn’t be living! We invite you to share their story. The details are below.

Imagine if you were told that your unborn child was incompatible with life? How would you feel if your newborn were denied medical services and life-saving equipment such as apnea and pulse ox monitors because it would prolong the inevitable? What if you were told that if your child does survive birth, you should not do any medical interventions because you would regret your decisions down the road? What would go through your mind if you were told that your child would be a vegetable and never recognize you or interact with their environment? That is precisely what most trisomy 18/Edward’s Syndrome parents are told when diagnosed.

Trisomy 18 is where there is an extra 18^th chromosome. It is the second most common trisomy behind trisomy 21 (Down’s Syndrome), and about one in 6000 live births are to a trisomy 18 child. But still not many people know about it because of the low survival rate and lack of medical community support to help these children. 90% of the babies do not survive birth (either because of medical issues or termination) and of those that survive, only 10% will see their first birthday, usually with severe medical issues and global developmental delays. In the medical books, Trisomy 18 really does carry with it the term of being ‘incompatible with life’; that is what doctors are taught in med school, and what parents are told upon finding out their child has this genetic disorder.

On 4/21/09, our daughter, Rebekah Faith, was born with Trisomy 18. She would have died from severe obstructive apnea if we had not made a decision at 6 weeks old to give her a life-saving tracheotomy. The first year was full of ups and downs, but she has been doing really well despite severe developmental delays and she is redefining the term, ‘incompatible with life’. We have learned so much from our journey with Rebekah over the past two years, and she is our little miracle and our hero! We appreciate life so much more because of having her with us, and we definitely see God’s hand in the orchestration of her life.

In April 2010, the Simpsonville Tribune Times ran an article of her story and first birthday party, which was a grand event with several hundred people joining us at First Baptist Church of Simpsonville to celebrate her awesome journey and milestone. On the afternoon of Saturday, April 23rd, we will be celebrating her SECOND miraculous birthday with a much smaller party, but we are expecting at least 5 other trisomy 18 children, and a few other children with chromosome deletion syndromes, to join us at this celebration! This is quite incredible to have these kids together in one place, and see how much joy and love they bring to their families! None of them deserve the label of being called ‘incompatible with life.’ These children do not deserve to be thrown away and ignored because they have this label. If you could see all of them together, you would see just how full of life they are!

We invite you to help change the views and medical practices of these children. Please come to Rebekah’s party on Saturday, April 23^rd between 2-3 pm to meet and share the stories of these amazing trisomy 18 children, and let families and doctors know there is hope and support for children of trisomy 18.

Special Friends and Special Celebrations

2011-03-30T19:07:00.000-04:00

Early March, I made a very special trip down south to Ocala, FL with Rebekah. We were on a mission to celebrate a very special 2nd birthday party for another trisomy 18 child named Caleb. I have been friends with his mom, Jeannette, for about two years. We met on facebook and I started a group called Trisomy 18 Mommies.

Jeannette and Susan

Jeannette is my BFF - we've shared the 'Trisomy Journey' tears, fears, and joys together... but it has always been 'virtually'. We would even talk on the phone several times per week, but we had never met in person.

I was so excited to finally meet her!

Rebekah and Caleb in their 'wedding' clothes.

Before the trip, Jeannette and I joked about dressing up Rebekah and Caleb in wedding garb and taking some photos. Very soon I will have a video slide show of this event! Although it started out as a fun idea, in the back of our head there was always the reality that they will most likely never get to experience a real wedding.

Rebekah and Caleb holding hands. :-)

The birthday party was amazing and I got to meet, not only Jeannette and Caleb, but several other special friends!!

What's really amazing is that Caleb's local news has been following his story from the beginning. Here is a link to the most recent story about his birthday party and all of us who traveled to be there for the special occasion! Caleb Turns Two Amid Support For Edwards Syndrome Kids

They have published several newspaper articles about Caleb and the journalist following Caleb's story recently posted a mini-documentary about him (below)!

If you'd like to keep up with Caleb's story, here is Jeannette's blog.

The VALUE of One Extra Chromosome

2011-03-30T15:46:00.001-04:00

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!

This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all! It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!) Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance. Bearing them is considered a misfortune, and supporting their life is a burden to society.

The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...

But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders! Our length of time on earth also does not determine our value. Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.

The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life! And the bottom line is, they are also created in the image of God. If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life,

and to love those that He loves.

Trisomy Awareness Month - Online Support

2011-03-21T16:46:00.004-04:00

MARCH IS TRISOMY AWARENESS MONTH

Trisomy 21, Down's Syndrome, has had support of the medical community for some time now, but that is not the case with Trisomy 18 (Edward's Syndrome), Trisomy 13 (Patau's Syndrome), and any number of other chromosome trisomies and deletions. I want to list resources that have been so important to me in this journey, sources that provide hope and help.

BACKGROUND

When I was pregnant with Rebekah in 2008-09, we had perinatal hospice support (which was very helpful in emotionally preparing us) and had even planned her funeral before she was born. Rebekah survived birth and we took her home on hospice care. I searched the internet for stories of hope. I found a few blogs of kids living with trisomy 18, but there really were not that many positive online sources to be found.

I joined the facebook community at that time, not willing to give up hope for our child. I began connecting with trisomy 18 families from around the world, and started a facebook group called 'Trisomy 18 Mommies' that helped us connect even faster. Of course, there are dozens of trisomy-related groups now, but this was my window into a new world of possibilities for our daughter.

As I learned more about other miracle children and as Rebekah solidified what we already knew - she was not a 'vegetable' or an 'unfortunate mistake', it didn't take us long before we ditched 'palliative care' for our daughter, and started treating her medical needs as we would any of our other children.

Love it or hate it, FACEBOOK has provided us with an EXPLOSION of online connections and resources for the trisomy community. Once on, you can be quickly connected with hundreds of families sharing the same diagnosis and having the same medical conditions as your child. We have been able to utilize these connections to get medical support for several children that were refused medical care, and we have also been able to use these connections to hook families up with doctors that are willing to provide medical interventions. Most of all, the networking of parents has provided an INCREDIBLE wealth of information - trisomy families are being more aggressive and proactive as a result. And I have seen more HELP given to families of living trisomy kids through these connections than through any foundation or organization out there.

I have used this online community of friends along with my list of resources below to help me in this journey. These resources will provide positive support throughout all stages of this journey. But daily contact with others who understand your pain and joys in this journey is critical! I encourage anyone finding this blog to get on facebook and join the largest and most active group or trisomy families anywhere!

RESOURCES

These are listed in alphabetical order. This is, by no means, a definitive list. And while these are great resources, the BEST resource is the online facebook community because it is not subject to any one organization's limitations, red tape, or politics.

Be Not Afraid - This is an online outreach to parents who have received a poor or difficult prenatal diagnosis. Be Not Afraid Facebook Page
Facebook Groups

Trisomy 18 Mommies - Originally started for trisomy 18 moms, the list now has some dads and some other related disorders like trisomy 13.
Trisomy 18/13 Journey - Created after trisomy 18 mommies to pull in other families and share 'journey' experiences.
Faces of Trisomy - Created to raise awareness for all kinds of trisomy (except 21 - Down's Syndrome). Lots of encouraging pictures here!
SOFT - Support Organization for Trisomy
Trisomy Awareness 2011 Facebook Photo Album - Thanks to Alisha Hersman-Hauber for the amazing photos and blurbs about kids like Rebekah, redefining 'incompatible with life'! These will eventually become part of a living with trisomy 18 site!

Hope for Trisomy 18 & 13 - Funding research, promoting education, raising awareness, and changing lives. Also links to Gemma's Bears (gifts for unborn/newborn trisomy 13/18 babies) and Payton's Bearts (Stuffed Bear gift for living trisomy 13/18 birthdays)
Iron Man for Kids - This is an organization that seeks to bring awareness and support for trisomy 13 and 18 families through participation in, and hosting of, sporting events. This family doesn't even have a trisomy child, but they have done a lot for the trisomy community and awareness!
Living with Trisomy 13 - Offering support and resources to trisomy 13 families and an online directory of Trisomy 13 children! Living With Trisomy 13 Facebook Page
Molly Bear Foundation - Provides supplemental financial assistance to families of Trisomy 18 kids. Molly Bear Facebook Page
Noah's Never Ending Rainbow - This is a national (USA) trisomy organization with a mission to educate, advocate, raise public awareness, promote strategic alliances, and assist families. Noah's Never Ending Rainbow Facebook Page.
Now I Lay Me Down To Sleep - Remembrance photography provided for free for families with adverse prenatal diagnosis or infant death. NILMDTS Facebook Page
Prenatal Partners for Life - Support and encouragement for families carrying to term with an adverse prenatal diagnosis and support for raising special needs children. Prenatal Partners for Life Facebook Page
Rowan Tree Foundation - Helping families heal after the loss of a precious child. Rowan Tree Foundation Facebook Page
SOFT - Support Organization for Trisomy 18, 13, and Trisomy Related Disorders - This is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome trisomy disorder, and education to families and professionals interested in the care of these children. You can purchase books on care of trisomy kids (great resources for new parents!) and they have an annual conference where families get together and support each other. SOFT does have chapters in other countries so this is the one related nonprofit out there that is truly a global organization. They are also tied into the hospital systems in the US, so information published here gets out to the hospitals. Please consider joining this organization! S.O.F.T. Facebook Page
TRIS and Living With Trisomy - Ongoing research project / database for Tracking Rare Incidence Syndromes that also maintains links to helpful groups for every chromosome.
Trisomy 18 Foundation - Provides support and information to trisomy 18 families. Trisomy 18 Foundation
Trisomy Online - Email lists that connect you internationally with other families. I am on the tri-med list and have learned a lot from the other families. I don't personally participate in a lot of the conversations, but it is a good resource to see how medical issues are handled internationally.
Trisomy 18/13 Awareness T-shirts - Thanks to Katie Weaver for her awesome designs! You can buy lots of trisomy awareness items and proceeds go to Noah's Never Ending Rainbow. The designs on this blog entry are from her and you can find a lot more at:

You Tube - there are MANY videos showing trisomy 18 and 13 kids hitting milestones and thriving! Just search for something like trisomy hope in the you tube search bar and you will get positive videos. Stay away from the school project videos filled with erroneous information.

Idaho Senate panel passes 20 week abortion ban

2011-03-17T00:37:00.001-04:00

WARNING, WARNING - This is a controversial topic about a very deep and painful subject. I will not compromise or debate my beliefs. (i.e. please no blasting me on this topic with your disagreements - simply stop right here.)

Why this was on an msn money link, I'm not sure, but you can access the link for the complete article here. Basically the Idaho senate decided it was cruel and painful to the baby to perform an abortion after 20 weeks. The abortionist doctor, of course, countered. He used the argument below.

Dr. Glenn Weyhrich, a Boise medical doctor who performs abortion services, said an absolute ban on such procedures after 20 weeks could force a woman to deliver a baby she knows is destined to die, causing deep psychological trauma and suffering, he said.
"In my experience, I've have not had any experience with women who opted to carry the pregnancy (with a fetal anomaly) to term," Weyhrich said. "The way this bill is written, the woman would be obligated to carry those pregnancies to term."

I am prolife, and I don't apologize for my beliefs. I don't think it's okay (on one hand) for a mother to abort her baby, but (on the other hand) if someone else kills her unborn baby, its manslaughter. I think it is insane to think it is humane to do late term abortions (as the article points out too that pain receptors are well in place by 20 weeks, and the procedure of sucking out the brains is quite gruesome). I don't condemn anyone who has made any abortion decision, it is one I am glad I will never have to make. We must each live with our own choices in life.

I DO believe that the choice to abort is not an easy one that women walk away from unharmed. I think it is as, if not more, emotionally devastating as the possibility of bearing a terminal child and planning the funeral before you even get to see the sweet face of your baby. The abortion decision can elicit all kinds of self-inflicted emotional pain and goes against the grain of what we were created to do.

God tells us that we are made in His image, created according to His plan, and made for a specific purpose. EVEN if it is a 'terminal' child, or a child conceived out of hatred and pain, or just an unwanted nuisance.

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10

I think I can speak for the majority of my trisomy friends (including those that lost their baby at or shortly after birth) that the psychological trauma and suffering were not reasons to abort. Yes, it hurts, it's 'not fair', we don't understand 'why me', and the pain doesn't go away. But there is also an unexplainable joy in bringing any child of God into the world, even if having to bid him/her farewell too soon.

That this doctor has NEVER had an experience with a woman who opted to carry a child 'incompatible with life' to term is...just very sad. I am sad for him and for all the women that believe that lie. I am also sad for all the people that buy into the lie that a condition can be deemed so 'incompatible with life' that abortion is the only logical answer.

I praise God that we did not make such a decision for Rebekah. I praise God for all of the wonderful trisomy babies I have met in the last two years and for the parents that also did not make an abortion decision. I thank God for the incredible friendships that have resulted from my personal journey.

Several moms have shared that they chose abortion based on false information that there was no hope for their child. And now, they see all of these children thriving and bringing joy to their families, and they have deep regret and sorrow. And they wonder, 'what if...' For all of you, please know that there is a release from that bondage!

"If we confess our sins, He is faithful and just to forgive us our sins, and to cleanse us from all unrighteousness." I John 1:9

May God bless all of those who speak up and fight for those who cannot speak or fight for themselves.

Putting On My Battle Gear

2010-10-25T10:00:00.000-04:00

Rebekah has been sick for well over 11 days now. We went to the pediatrician's office two Saturdays ago to get her checked out. She had upper respiratory illness (URI) symptoms like slightly discolored and thickened mucous, deep cough needed to work the mucous out of her lungs, low grade fever. In the past, we would test for all kinds of URI things (RSV, chest x-ray for pneumonia, MRSA, etc) with negative results and all of her symptoms led to, believe it or not, a urinary tract infection (UTI)!

So she sees this new doctor that Saturday who actually listens to me, but in the process does nothing but cath her to check for a UTI. The results after a 48 hour culture were still negative. So all week we have done nothing but 'manage' it at home with breathing treatments, lots of suctioning, and some extra love.

Smiling for the camera despite not feeling 100%!

Then, last week on Thursday night, she threw up and aspirated (it went right into her trach opening and scared me to death!). Called the doctor Friday morning to request a 'preventative antibiotic', since her risk of pneumonia due to aspiration is high. They said no to the antibiotic. In treating her like a 'normal' child, they will not prescribe antibito Good news is, she hasn't gotten worse. Bad news, she's not better either.

Why do I feel that going to any doctor appointment with her is like pulling out the battle gear and putting it on? It feels heavy and oppressive! I am the mom, why do I let these doctors intimidate me and not speak my mind? Why do I accept their answers even though I am questioning inside? It's kind of funny because I want them to see her / treat her as a 'normal' child...but when she is sick, I want them to remember she is fragile and needs special consideration. Why can't I have it both ways?

Such is life with our little Rebekah! Guess it would be too boring any other way...

A Month To Celebrate!

2010-10-20T23:40:00.001-04:00

Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4

This is a fabulous celebratory month for Rebekah! I needed to share all of these milestones before I forget them!

I pray that this information about Rebekah continues to bring others closer to God, provides hope for those facing the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.

Medical/Health-Related Milestones

10/21/10 - Rebekah is 18 months old!! Hurray!!
It has been a little over a year since Rebekah has been admitted to the hospital for an illness! She did get RSV last February, but we managed her care AT HOME. Since then, she has had a few other illnesses, but is getting better and better at fighting them off and recovering quickly. None of them required hospitalization overnight!
She is becoming more and more stable. Even when she gets a cold, we are only minimally needing oxygen supplements for her.
Despite her trach and diagnosis of being likely to aspirate, she has NEVER had pneumonia! Also, despite her trach and the advice not to orally feed her, we have been successful at giving therapeutic amounts of food with no signs of aspiration! In 2011, we will be working on trying to get these feeds up to an amount that will decrease what she received by her g-tube.
She has been cleared by the cardiologist and only needs annual checkups. The nephrologist has cleared her from the concern of chronic hypertension. She has no pulmonary hypertension and, despite her horseshoe kidney anatomy, her kidneys seem to be functioning properly and doing their job well. Despite her neurological issues, we are still blessed with no seizure activity. Her health is pretty amazing given all of her anomalies.

Developmental Milestones

Rebekah is rolling from her stomach to back, and back to either side! We think she can roll all the way to her tummy, but she HATES being on her tummy. Just seeing her roll side-to-side is quite an improvement in her mobility! It allows her to scoot around and rotate her body when lying on the floor.
She is now weight-bearing on her legs!
She is giving open-mouth baby kisses!
She plays peekaboo with her eyes by squiting them shut then peeking out behind those long beautiful lashes. She doesn't use her hands much, so we will take the handless form of peekaboo!
She can sit for about a minute before falling over. She does not have the reflexes to catch herself, which means sitting requires much more balance. We are diligently working on her arm and hands weight-bearing and hoping to see her more actively catch herself in the near future, which will lead to longer and more consistent sitting ability.
She is developing a sense of humor and finds it amusing to push things off her tray and watch everyone retrieve stuff for her!
She is developing clear likes and dislikes, showing her opinion, and clearly demonstrating people preferences and stranger anxiety. She is developing a lovely toddler attitude!
She definitely focuses on people and things she is interested in. She will watch her favorite videos over and over with much intensity.

Other Celebrations

We have had nursing care for Rebekah for one year now! I attribute her health and development to this!! Having her Nurse Becky here for her 5 days a week keeps her healthier and gives her a lot more therapy time than I could ever manage on my own with all of our boys!
When we were expecting Rebekah, we made funeral plans before she was even born. Those plans have been long forgotten, and we actually just went through the process of redoing our wills to plan a future for Rebekah including a trust fund that would protect her from any income and asset assessment that might cause her to lose her Medicaid Tefra benefits. The process of moving from a 'death' to a 'life' view has been amazing.
Rebekah continues to be a blessing to many and a constant reminder to us that miracles do still happen! We thank God everyday for the honor of caring for her.

While Trisomy 18 may be a diagnosis, it is NOT a prognosis. Each of these children, created like us in the image of God, deserve a chance to love and be loved. Their purpose here on earth is not to become rich and famous, it is to teach us about humanity, compassion, and grace.

This video demonstrates how Rebekah (17 months) interacts with her brother, receiving and giving affection. We captured some of her first 'kisses' in this video - enjoy!

In this video, Rebekah (17 months old) is just starting to initiate weight-bearing on her legs. It kind of surprised us how this behavior all of a sudden emerged. We are in the process of reviewing standers for her and hope to order one soon so she can keep working on this skill!

Web-Based Doctor Referral System for Trisomy Kids

2010-08-09T19:51:00.009-04:00

Trisomy 18 and 13 are deemed 'incompatible with life' by the medical community. The statistics are staggering, with only 10% of pregnancies resulting in live births, and the majority of those dying by the median age of 2 weeks. Looks pretty bleak, huh?

But let's consider some FACTS the the statistics hide...

Many, if not most, of KNOWN trisomy 13/18 (and even 21 - Down's Syndrome) pregnancies are terminated because parents are told how terribly hard it will be to manage a child that is severely affected mentally and physically. These babies are never given a chance - they skew the statistics and make it look like lives that are not 'viable'.
Most trisomy 13/18 babies, when born, are put on hospice and sent home so that families can enjoy what little time they have with them. Some of this is because of the medical community's push to not extend the 'life' of these incompatible and undesirable children. Some is because parents trust and believe in the doctors and medical community to give us truthful information. Our own Rebekah was put on hospice out of the hospital, not because we didn't want to give her a chance, but because we believed the perpetuated lie that these children are 'incompatible'. It didn't take us long to figure out she was a fighter, and well worth fighting for!
And the rest of them? Yes, there is a percent that will not make it because of the combination of conditions they have, but many WOULD make it if the medical community would see value in their lives and afford them the same life-saving interventions that 'normal' children with anomalies are given without second thought. Many of my trisomy friend families have actually been denied life-saving operations for their children, even children that have proven they are compatible with life and have lived with their conditions past one year of age.

Out of all the trisomy 13/18 resources out there, there is no good system for helping parents find the medical resources (doctors and hospitals) willing to work with them to help these children. There is an exciting project out there designed to do just that! But it needs YOUR help to get the grant money necessary to fund its inception.

Even if you do not have a trisomy child, PLEASE vote everyday in August for this project. You can vote online once per day, and text once per day. Please help Rebekah and her friends by supporting efforts to bring REAL help to the living kids of trisomy 13/18! Let's work together to show the world that these children should not be labeled statistically as 'incompatible with life'.

They deserve a chance...
and YOUR vote!

Trisomy 13 and Trisomy 18, and related numbered Trisomy Variations.... Families, Friends, Missions of HOPE coming together to VOTE---Have you voted today? If you don't see this link on your Trisomy Support, resources, Please post and share. Bombard them.. We need to win this challenge. DAILY VOTING, by FACEBOOK VOTING and TEXT (Text 101529 to Pepsi at 73774). And if your posts get deleted, then you know this resource you frequent is NOT coming together with the TEAM of Trisomy Sites working together. Then you need to QUESTION WHY? Why would a support organization not want to help all of TRISOMY Families in this way... So keep your eyes open and be aware of those sites that are all SIGNIFICANT in coming together for the common good. Thanks for your support, it is via the SMALL and many creative sites that we have made the most SIGNIFICANT CHANGE in how OUR PRECIOUS CHILDREN ARE SEEN and TREATED! God Bless you ALL in your efforts for our KIDS.

The 'ME' in Moment

2010-07-27T22:27:00.004-04:00

I have not posted in two months. It's been busy ans stressful with many doctor visits and diagnoses. Then I just didn't feel like it. Until now...

What I am about to share here is extremely private and soul-bearing. I ask that you read it with a loving, non-judgmental heart, because I feel compelled to share it. These are feelings that I think many trisomy 18 (and other special needs) moms go through. And I know I am strong enough to share in the hopes that it will help someone else on their journey too. My prayer for Rebekah has always been that she would have a definitive purpose in this world to lead others closer to Jesus. So please keep any harsh comments to yourself and use this as a lesson in empathy and love.

I know it’s selfish, I know it’s not logical, and you’ll have to excuse my “me” moment… afterall, where would moMEnt be without 'me' in the middle?

I have always been and am still praising God for the amazing miracle of Rebekah. I am grateful for every day, every moment - even though it is stressful and exhausting. I do not regret her, and I wouldn’t give her up for anything. But I am having a moment of overwhelming helplessness and despair.

I have tried to be strong since her birth, preparing for both the worst and the best to happen. And I don’t think it started to be as draining for me until we got some recent medical assessments that just continue to emphasize what a fragile and short-lived life Rebekah will have, without God’s continuing grace to grant her time with us. Then I went to a recent playdate and saw some ‘normal’ children about Rebekah’s age sitting, walking, talking, playing… And it just hit me – this wave of utter despair and sadness. A grieving for what could’ve (should’ve) been and what will never be. Mourning for the day that will inevitably come, and a mourning for friendships forgotten in this lonely journey. I don't fit in anymore. There isn't a comfortable place for me.

And Lord knows, I have tried to lean on Jesus through this experience! Let’s face it; I can’t really rely on anyone else anyway. My friends of ‘normal’ kids just don’t quite get it, and I am sure they don’t want to listen to conversation after conversation about Rebekah. It might make them feel a little guilty because they have normal, healthy kids. It might make them feel uncomfortable seeing an ‘abnormal’ baby. It might (gasp) make them pity me. Oh no, I don’t need that one! I am right where I am supposed to be and there is a reason and purpose for it. I have no doubt about that. And there are even a few that were so supportive of my pregnancy and situation, but then when she decided to fight to live and we fought to save her, they disappeared into the woodwork also. And because I can't leave the house at a moment's notice, it’s been ‘out of sight, out of mind’, because it’s easier to ignore the relationships in our life that take more effort and energy. Believe me, I KNOW that. At this point, my relationships with anyone take a lot more energy out of me too, more than I think any of you 'normal' moms can ever know or appreciate. It is painful to see ‘normal’ every day and know I cannot have it. It is extremely draining to be strong for everyone around me and ‘pretend’ like life is great. And while I do have a trisomy family on facebook for support, they are busy and stressed too and, unfortunately, most of them are ‘virtual’ friends. At least, I guess, I know who my ‘real’ friends are these days.

Even though we have been faced with a better outcome than we had ever hoped for, it is still life-draining to daily wonder the fate of your child.

Why can’t I just happy that my daughter is alive?
Why can’t I just appreciate the services that pay for nursing and equipment?
Why can’t I acknowledge the blessings in my four healthy adorable boys?
Why are bitter feelings creeping into my soul, leaving me to feel chewed up and spit out?
Why does serving others no longer fill me with joy, but leave me with an empty spot in my soul?
Why am I all of a sudden apathetic about everything, wanting to sleep in and accomplish nothing worthwhile all day long?
Why do little things people say about me that normally wouldn’t bother me all of a sudden cut to the bone and leave me a crying and self-pitying shell of who I know I really am?
Why do I sometimes wonder what life would be like if Rebekah hadn’t made it? (Please understand that I absolutely would not want it that way, but these feelings still pop into your head as you play the ‘what-if?’ mental game with yourself.)
Why, why. why...

So I talked to a few of my virtual friends because I have been feeling so down on myself for these feelings of jealousy, despair, ugliness, and apathy. I was afraid I was abnormal and that God was going to be angry at me for all of these selfish, and, yes, bitter feelings. Maybe he would stop blessing Rebekah because of my moMEnt I am having. I am truly feeling like Job about now, kind of forgotten and left to ‘rot’. Friends that don’t have anything supportive to say, other than it’s me that is the problem. And I know to some extent that may be true.

But I know something else too that was confirmed through conversations with other moms who are going through the same life journey… THIS IS NORMAL! Want to know something else too? It doesn’t matter what anyone else thinks about me and my situation. Despite how it might appear, God IS on my side and there will be a positive outcome to all of this inner turmoil.

Jeremiah 29:11 - For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I KNOW there is a plan in all of this and for whatever temporary suffering we go through here on earth. I also know that the Apostle Paul went through some major suffering that bordered on depression. He begged for a different outcome, yet finally succumbed to the Lord’s will.

2 Corinthians 12:7-10 - To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

So there you have it - I am bearing my soul and sharing my weakness with YOU, who have read this far. My hope for you is that you will be blessed to know that there is a plan and purpose to everything and that God’s grace can cover up our weakness and make us strong.

And for those of you who may fall into the category of old and lost friends, know this… I love you anyway.

Multi-Purpose at a Price That Can't Be Beat!

2010-06-01T23:03:00.008-04:00

Homer's Multi-Purpose Paint Bucket from Home Depot - Priced $2.34

We recently made a quick trip to see my brother's family in Atlanta. I needed to give Rebekah a bath, and had not brought her baby bath (which she is almost too big for anyway). My brother and sister-in-law are way pass the baby stage, so no more baby paraphernalia to borrow during visits. And because of Rebekah's trach and not being able to sit up, I didn't want to use the regular bathtub. So I borrowed my brother's 'Home Depot Multi-Purpose Paint Bucket' and used it as a bath. After all, isn't there some sort of fancy-schmancy fad-tub out there that resembles an over-priced bucket?

Rebekah just got put into the bucket, and didn't know what to think about it.

Her head didn't reach to the top of the bucket, so I think she was overwhelmed by 'orange'.

But as I started to dump some water in, she looked down and gleefully eyed the water.

Then she tried putting her hands in the water. (I wasn't quick enough with the camera.)

All clean and ready to get dressed!

All-in-all, I'd give the Home Depot Multi-Purpose Bucket 4.5 out of 5 stars for multi-purposefulness at a price you can't beat. Could I shave a few inches off the height so Rebekah might see better over the top of the bucket, and choose a different color, I would gladly change my rating to 5. Now, as for the $43 Spa Baby European Style Tub...save your money!

Reflections on the One Year Anniversary of Rebekah's Tracheostomy

2010-06-01T20:15:00.011-04:00

Rebekah - June 2, 2009 - Shortly after tracheostomy and g-tube operations.

Rebekah - May 14, 2010 - Playing with the Occupational Therapist

By the time Rebekah was 1 month old, she was having such severe apnea attacks that we nick-named her 'Blue Belle' because she frequently turned blue. In fact, in one 24 hour period, her monitor recorded a total of 384 events and maxed out the memory after just being downloaded! So its really no wonder why she was our Blue Belle.

Despite her apnea, she managed to grow and fight for life - but we were worn out. Finally, in a point of desperation, exhaustion, and hope, we decided 'palliative care' was not enough and we admitted her to the local Children's Hospital. It didn't take long for us to hear more than one conversation with a medical professional that our 'incompatible with life' daughter most likely had central apnea because her brain wasn't functioning properly and, if we continue down the path we were headed, she would end up trached, on a ventilator...a virtual vegetable with no emotions, reactions, awareness. And looking down the road a year from 'now', we would, like so many other parents, regret the decisions we were about to make.

Thankfully we did not listen to those opinions, and we requested a bunch of tests to determine exactly why Rebekah was having so many apnea attacks. She had a CT scan, a bronchoscopy, a sleep study, a swallow study, an MII (stomach acid probe test), all kinds of blood tests and cultures. Surprising all of the doctors, the evidence post-tests pointed to obstructive apnea in her upper airways, most likely caused by her micrognathia (small jaw). Within a two week period of these tests and trying out various solutions to address the obstruction, it was decided the easiest solution to give her the best quality of life outside of the hospital was a tracheostomy. Exactly one year ago on June 2, 2009, Rebekah had this life-saving operation and began the road to 'Redefining Incompatible with Life'! So yes, the doctor was right about the tracheostomy. But the rest of the picture is significantly different.

Was it easy? No, absolutely not. There were a lot of sacrifices across the board in our family. Our children were cared for by friends and church members for a month while Michael or I stayed by Rebekah's side around the clock. When she came home from the hospital, she was extremely fragile and we did not go anywhere or do anything. My kids' had a pretty 'boring' summer with no fun things to do. We didn't venture out very often. I was consumed with the task of caring for Rebekah and their quality time with Mommy and Daddy suffered for many months and into the fall school year.

Was it worth it? Absolutely YES! Despite all of the sacrifices and lack of 'fun', our family learned some very important lessons.

We make sacrifices daily for the ones we love.
We stand beside people when they are at their weakest.
We help those who cannot help themselves.
We love people (such as those who did not agree with our pursuit of extending Rebekah's life), even when they are unlovable.
We humbly accept help when we cannot do something alone.
We get to witness the hand of God at work when we are faithful and loyal to Him.
Most of all, I think they learned that Mommy and Daddy love them all and would do anything for any one of them, and that EVERY life deserves a chance (even those that do not fall into the category of 'normal').

Rebekah may be extremely delayed, we cannot just get up and go somewhere at a whim anymore, and our family life doesn't fall into the category of 'normal', but here we are a year later with a thriving happy baby that most definitely knows us, loves us, and has an opinion about many things that she is more than happy to share! And, all praise given to God for Rebekah's progress and strength, this summer will restore the memories of fun summer breaks with vacations, visits to family, and lots of activities to fill up weeks on the summer calendar.

It still isn't easy...

We've had some stressful moments along the way, but adversity can bring family closer together if you are willing to love one another and sacrifice for each other.
Our family makes choices and decisions based on a love of God, a much deeper understanding of the fragility of life, and believing in the blessing of children. So our choices and decisions do not always follow the mainstream way of thinking. For that, I am often excluded from the crowd.
I've lost some friends along the way. I'm sure it wasn't on purpose on either side, but when you just can't up and go when you want to, well...people tend to forget about you after awhile. (Out of sight, out of mind...). So I hear from my 'old' friends a lot less and that is jsut a sad fact of life. It does, at times, make me feel very lonely and secluded though, and I may have a momentary pity party for myself. That is, until my four boys come and give me a big hug and Rebekah bestows on my a smile that would melt the coldest of hearts.
There is always that fear in the back of your mind that the scale will inevitably tip the other way and I will have to eventually face the inevitable. Each week brings more news of T-18 pregnancies that resulted in sadness or sick children that have lost the battle. The statistical evidence glares me in the face daily, and I feel like a momentary lottery winner with my 'long-term survivor'. But the truth is that death is a reality for every single one of us here on earth, because NONE of us are guaranteed another moment. So we need to enjoy each moment we have and fill it with important, purposeful things that we will not regret when we look back on our life.

Do I regret the past year and the decisions we've made?
How can I? I have a husband that loves and cherishes me, I have a beautiful family of five kids, I have a support group of t-18 friends that understand the hardships and blessings, and I know more than ever before that my Lord and Savior holds me close and comforts me.

Besides Rebekah redefining incompatible with life, I think I have also redefined me. I think the Lord has opened my eyes a lot in the past year. In general, little things bother me a lot less than they used to. It's not quite so important for my way to be the way things are done. It's not as necessary to get the last word in during a conversation or disagreement. I don't need to impress anyone. It's a lot less important to keep up with the Joneses, or for that matter, even care what they are up to. And I think I can truly love others much better than I could before (or at least understand what that means!).

I am in a good place right now. Our family is in a good place. And it is due to the blessing of raising Rebekah. So a year later, I asolutely do NOT regret any decision we've made or the changes it has brought to our family. We are blessed.

John 1:16 (NIV)
From the fullness of his grace we have all received one blessing after another.

Timmy's Tasty Treats to Topple Trisomy 18

2010-04-27T20:54:00.001-04:00

For Timmy

My T-18 Family friend, Stefanie Hilarczyk, had put together a fantastic collection of recipes in order to raise money for the Trisomy 18 Foundation and to help raise awareness of Trisomy 18. The cookbook is in honor of her nephew, Timmy, who has a mosaic form of triosmy 18. It is called Timmy's Tasty Treats to Topple Trisomy 18, and I know they're tasty, because I submitted several yummy recipes myself!! :-)

Rebekah (along with several of her T-18 friends) is featured in the informational video introducing the cookbook, so check it out! She was about 6 months in that picture.

Pre-sales are going on right now for the cookbook. So please help support this cause and get some tasty treats along the way!

Cooks cost $25 + $5 S&H ($30 total). They are $10 S&H ($35 total) for overseas orders. Just Paypal Stefanie at thilarczyk@optonline.net. Be sure to send her your address with the order! The cookbooks will be in her hands by June 2nd, and she will ship them out as soon as they arrive.

Thank you for supporting the trisomy 18 cause!

Milestone(s) I Never Thought Would Come...

2010-04-21T01:12:00.007-04:00

Today we celebrate probably the biggest milestone of Rebekah's life... her FIRST birthday!! Praise the Lord!

I tried to submit a birthday announcement to our local newspaper a few weeks ago, but they no longer do birthday ads. So I submitted a birthday celebration announcement to their online website as a community event. I was called a few days later by a reporter that wanted to do a special interest story on Rebekah! That story will, I believe, run in todays The Greenville News paper! I have no idea what the final story will say/include...but hopefully it will be a story of inspiration, God's grace, faith and miracles!

So, on Saturday, 4/17, we celebrated with over 200 people and with 3 other trisomy 18 friends!! What an incredible day! And Michael, during his speech, reminded everyone of several important things that have happened along the way. When Rebekah's condition at 19 weeks gestational age was confirmed with trisomy 18 through amniocentesis, the first thing we did was pray and give the situation over to God, come what may. On the day of Rebekah's birth, when she had to be bagged several times for failure to breathe and we were being gently pushed to make decisions, our 'decision' on 4/21/09 was that we would keep her alive through the night so that her brothers could meet her in the morning.

But God had a different plan for Rebekah, and instead of carrying out completed funeral plans, Rebekah stabilized and fought for life! She went home from the hospital after one week, and she was really only there for the whole week to establish her feeding (by mouth!) and to get her over some jaundice. We went home and, although she had many episodes of apnea, she continued to eat well and grow.

When she was one month old though, her apnea episodes were getting so frequent, that she had hundreds of 'episodes' in one 24 hour period and maxed out her apnea monitor memory at the same time! (By this time, she had also earned the nickname 'Blue Belle' because she was constantly turning blue during these events when she would stop breathing.) We made the decision to check her into the hospital and run whatever tests needed to be run so that we could definitively know the reason for her life-threatening apnea. This began a month-long process of tests, juggling our schedules and four boys at home, and relying on friends for childcare, meals, help, and praying earnestly that her life would serve a greater purpose.

Before the tests even began, we were lectured to by doctors... "You need to sit down and discuss this situation together and come to an agreement on what you are going to do. Your child is going to need to be trached and on a ventilator. Many parents have been down the path you are going down and, knowing now what they didn't know then, would have made different choices..." The gist of the conversations? Your daughter is incompatible with life. Don't make her suffer by putting her through all kinds of tests and procedures, only to put her on a ventilator for the remainder of her short life.

But after one important test, her sleep apnea test, attitudes changed. Her major issue was obstructive apnea, most likely caused by micrognathia (small lower jaw) but a normal size tongue - something that could be addressed with a tracheostomy until her jaw caught up to her body in growth. And because the problem seemed to be all upper-airway related, ventilation should not be needed. And it wasn't! And while it took a good three months for her body to completely adjust to the tracheostomy, we have never filled-up her apnea monitor memory again!

Yes, Rebekah does have some other health issues and physical anomalies, and we see many specialists. But for the most part, there is nothing that stands out as a life-threatening condition and she has grown from her original 4 pounds, six ounces and 19 inches long to her current size of 16 pounds, 10 ounces and 25 inches long! She is happy and stable. Despite her trach, she is learning to vocalize. Despite severe developmental delays, she is learning to roll and prop sit, reach out and grab toys, hold objects, recognize and appropriately react people and familiar surroundings. She watches us attentively, and follows objects with curiosity and interest. She is, as I like to say, redefining 'incompatibility with life'!

And now, she has beaten those horrid statistics of trisomy 18 children - she has made it to her first birthday!

Although Rebekah's care has been decent, my birthday prayer for her is that doctors and medical professionals will now start agressively treating her as a child full of life, not as a child doomed to die at any minute! It was only this week that we finally got her into a local pediatric ENT to evaluate her trach and ears. Previously, her trach was being managed by pediatric surgery, despite our request time and time again for an ENT that would manage infant tracheostomies. We were told there was no one that would manage it (locally) and no reason to go elsewhere. We were pretty much left to rely on the medical equipment provider's Respiratory Therapist for information on how to manage her trach, and told to come back in a year for the trach evaluation.

Do you know what the ENT said to us when we went in for Rebekah's evaluation with him? "I have never heard of Rebekah's case until now. We handle pediatric trachs all the time, and get referrals from pediatric surgery constantly, for much less complicated issues. With Rebekah's medical history/condition, I do not understand why she was never referred to us. She should've been followed up by an ENT since her tracheostomy." Well, I do not understand either!! And it makes me so angry that Rebekah does not always get treatment that is appropriately aggressive and proactive. And I am so happy to have found this doctor because I know he will do his best to help her and not to hold her back. We asked him point-blank - 'are you willing to manage Rebekah's trach?' His ending comment to us was that he is "very happy to manage Rebekah's care." He has scheduled us to come back for a complete ABR next week, and we will be scheduling an OR visit soon to have her sedated for a complete look at her ears and airway system. This is exactly the kind of proactive care that Rebekah deserves!

So, after a year of ups and downs, hospitals visits, undefined illnesses and lots of drama, I am seeing milestones that I never thought would come!!

Rebekah's First Birthday;

Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;

A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!

What a grand birthday it is! Thank you, Lord, for holding us up through it all and being faithful to provide what we need!

Rebekah's First Birthday Party

2010-04-21T00:49:00.001-04:00

Click here to view these pictures larger

First Birthday Celebration Invitation

2010-04-05T01:00:00.004-04:00

On April 17th, we will be throwing a party at our church for Rebekah's first birthday (which is actually 4/21). Because I am budget-conscious and, well, a really bad procrastinator and lazy when it comes to mailing things, I created Rebekah's birthday invitation on facebook about a month ago and never sent the details to any of our dear friends not on facebook! (I do have to admit that I created and sent a picture card invitation to all of her medical community contacts, but that is because I REALLY want them to come and see that our daughter is REBEKAH and not just a TRISOMY 18 statistical number).

But life happens... Rebekah had RSV, then crazy school schedules for the kids, traveling, an ER trip... So I have spent the last 2 hours trying to create a late evite invitation for her party, only to be stumped with limited text description and picture size! UGH!! I am posting the complete invitation here to the blog so I can link to it from the evite. If you see it here, and not in facebook or an evite email, please make sure you go to the evite to RSVP so I have an accurate headcount. And for my family and friends receiving this late - well, that's just me, what can I say! We know you've heard that this event is coming. I love you all and hope you can join us for this celebration, so don't get hung up on a late electronic invitation!

EVITE LINK TO RSVP (but please read all the details below because it doesn't fit on the evite!)

YOU ARE INVITED TO THE BIGGEST BIRTHDAY PARTY OF THE YEAR!
(Well, at least in Simpsonville, SC!)

Rebekah Faith Budd,
born with full Trisomy 18 on 4/21/2009,
is redefining "Incompatible With Life"!

Date:	Saturday, April 17, 2010
Time:	1:45pm - 4:30pm
Location:	MPAC Building @ First Baptist Church Simpsonville
Street:	East Curtis St & College St
City/Town:	Simpsonville, SC

SUMMARY:
Rebekah Faith Budd was diagnosed prenatally with trisomy 18 and never expected to live. (See bottom of this post for more info on trisomy 18). We prayed, with many others, that our little girl would defy the odds and would thrive, but more importantly, that her life would have a greater purpose!

She has now made it to a tremendous milestone - her FIRST BIRTHDAY! This is a day too many families of trisomy 18 kids never get to celebrate. So we want to celebrate BIG and celebrate in honor of all the T-18 kids out there. And we want to hear all of the ways Rebekah has blessed the lives of those around us. So you are invited to celebrate with us, and help us document why these children should be given a chance!

And if you have not met this little bundle of joy yet, you will not want to miss this opportunity to see her and several of her special T-18 friends who will be celebrating with us!

PARTY DETAILS:
Sign In - Please try to arrive between 1:40-2:00 to 'sign-in' for the party! We want to make sure we have an accurate account of who attended!

PROGRAM -
- On-Going Slideshow of Rebekah's 1st year.
- Welcome and opening words
- Rebekah's Story / Testimony
- Update on the World of Trisomy 18
- Introduction of Guests of Honor - several T-18 friends and those from the medical community involved in Rebekah's care who are attending
- A slide show tribute to our T-18 "angel" friends
- A few words from Pastor Randy
- Blessing for Rebekah and her T-18 friends
- Cake and light refreshments served
- Open Mic - an opportunity for anyone to share a few words about how Rebekah's journey has impacted your life. Share a favorite verse, quote or poem relevant to this occassion! For those that cannot attend, we will read off words of encouragement that we have received. This will be taped so that we can show others that these children are worth saving!
- Closing remarks and thank you's
- Balloon Release by all guests attending

GIFTS - YOU'RE PRESENCE IS OUR PRESENT!
Because of Rebekah's trach, g-tube and physical/developmental uniqueness, we will have a Wishing Well in lieu of gifts. This will help us to purchase items specific to her needs, including specialized and therapeutic equipment not covered by insurance. We also want to create information packets for the local medical community to educate them on the current world of trisomy 18.
But please know, your presence is our present! We expect no other gifts. Please just come and celebrate this amazing little girl with us!

RSVP
Please RSVP by April 10th and comment on total guests attending so we can order enough cake!
If you cannot attend and would like to send a birthday card, please send those to:
Rebekah Faith Budd
128 Horsepen Way
Simpsonville, SC 29681

THANK YOU TO EVERYONE FOR SHARING IN THIS VERY SPECIAL EVENT WITH US! WE THANK YOU ALSO FOR YOUR CONTINUED PRAYERS AND SUPPORT!

LOVE,
THE BUDDS
Susan, Michael, Elijah, Jeremiah, Isaiah, Josiah & Rebekah

WEBSITE LINKS:

FACEBOOK FAN PAGE - I just created a Fan Page for Rebekah. Please become her fan!
FACEBOOK EVENT PAGE - http://www.facebook.com/#!/event.php?eid=327118879639
BLOG WEBSITE - http://www.buddzoo.com/
TRISOMY 18 FOUNDATION - http://www.trisomy18.org
SOFT (Support Organization for Trisomy 18, 13 and Related Disorders) - http://trisomy.org/

TRISOMY 18 BACKGROUND
Trisomy 18, Edward's Syndrome, is a chromosomal defect in which there is an extra 18th chromosome in every cell of the body. The effects of an extra 18th chromosome are usually a lot more life-threatening with more critical birth defects than that of the more known Trisomy 21 (Down's Syndrome). Because of the prognosis, it is deemed "incompatible with life' and many medical professionals encourage women to terminate their pregnancies early or deny/fail to provide aggressive medical treatments.

Many different statistics are posted regarding life expectancy, but the fact is that most babies die before they are born (statistics say anywhere between 50-90%) and most of those born alive die by 2 weeks old (up to another 50%). Few make it to the milestone of their first birthday, and of those that make it that far, life expectancy remains unknown due to their medically fragile nature.

He is Risen Indeed!

2010-04-04T23:00:00.000-04:00

As this Easter weekend comes to an end, I reflect on the awesome power of the cross and our resurrected Savior, and how that event changed the course of world history! The difference between Christianity and all the other religions out there is that OUR Savior IS resurrected (and theirs is not)! It is far more than a story, or it wouldn't have affected history as it did. It is far more than a story, or I wouldn't be the person I am today! I wouldn't feel compelled to change, grow, love... and I wouldn't have the strength or courage to endure...

In my own life, 4/21 marks another type of death and resurrection in my life. I was already a born-again believer but this experience has challenged me beyond my head knowledge of Christianity and faith and made me step out where I never would've asked to go. My daughter, Rebekah, was born with full trisomy 18 on 4/21/09 and was not expected to live. But she DID live. And I have been connected to countless others who are on this same journey, and some have had to already suffer the death of their child. In either situation, I have seen time after time the power of prayer and the strength and grace supplied to face this path. The experience has changed my outlook on life. My faith has increased tremendously along with my burden to share Christ with others. He has allowed me to find joy and peace in the midst of suffering, and unleashed a strength in me I never knew I had. Well, that's because it ISN'T my strength, it's from my Lord and Savior, and that is my point. It is so much MORE than a story! And this one point is only one of MANY things I could list as my personal eyewitness testimony to the power of the cross.

So He is Risen, indeed! How gracious and loving our God is and how amazing his grace!

And if this just sounds crazy and you don't have your own 'story' to tell, He is waiting for you to simply reach out and accept His simple and perfect gift of salvation. Then you, too, can realize the power of the cross and a resurrected Savior!

Don't Mess With The Mother of a Special Needs Child!

2010-02-20T22:46:00.007-05:00

We have been blessed to live in a state that has a 'Katie Beckett' Medicaid clause, called 'TEFRA' here in SC. Basically, it allows families like ours (i.e. Middle Income), who don't meet the low Medicaid income requirements, to apply for Medicaid just for a dependent who meets a certain set of medical requirements (expected life-long, debilitating prognosis...which trisomy 18 certainly meets). This is great news for families that cannot add their child to their own insurance due to 'pre-existing conditions', or for those who have undesireable insurance. We actually have decent insurance already (Blue Cross - Blue Shield), but this helps us supplement the MANY fees BCBS won't pay. It also allows us to apply for medicaid-based waivers to help with care that our primary insurance won't cover!

We were briefly on a state waiver called Community Long Term Care that gave us funding for 32 hours of in-home nursing care per week. We used that while we processed for the SC 'cadillac' of waivers - the MR/RD (Mentally Retarded / Related Disorders) Waiver. This gives help in the area of nursing AND other things like equipment not covered by private or medicaid insurance. The wait list is long because there are only a certain number of slots available, many wait for years to get on this waiver. Because of Rebekah's critical condition when she came home from the hospital last June with her trach and g-tube, she was placed in the number one waiting spot for the waiver. We were ecstatic! We lucked out and end of November, a slot came open. Rebekah started on the MR/RD waiver the beginning of December! We got bumped up to 42 hours of nursing care per month and were waiting until she got a little bigger to start the specialized equipment orders. This was a happy time because it is known that once you are on this waiver, you basically stay on it until you die or willingly give up your slot.

Things were going great in December and January! We got a consistent nurse that we love to fill in the 42 hours per week, and Rebekah gets loving care that frees me up to do more with my boys during the day. Plus Rebekah has progressed so much in the last few months of nursing care since she has one-on-one attention and someone constantly working with her on her therapies.

Just two weeks ago, we received verbal notification that my daughter was losing her MR/RD Waiver spot. Imagine my shock and devastation! I thought we were pretty 'safe'. The reason for her 'forced' disenrollment? Because the nursing care could be covered/paid for by another entity (the CLTC nursing care is through a different government agency), they decided Rebekah wasn't using the waiver services and, as written in their rules, if you haven't used waiver services for 30 days, you can be automatically disenrolled.

Problem is...I cannot find in writing ANYWHERE anything to this decision. And so I wrote up a 56 page dissertation noting every piece of government documentation I could find on the subject.
That's right...DON'T MESS with the Mother of a Special Needs Child! We not only become a nurse along this path, but apparently we become a lawyer too.

Below is the letter and the summary pages noting the documentation verbiage that directly contradicts their decision.

Good news is, once they found out I was appealing the decision, they did put it on 'hold'. We now wait until we hear back...
_________________________________________________________

February 17, 2010

Dr. Beverly Buscemi
Director SC Department of Disability and Special Needs
3440 Harden Street Extension
PO Box 4706
Columbia, SC 29240

RE: Appeal to the Disenrollment of Rebekah Faith Budd from the MR/RD Waiver

Dear Dr. Buscemi,

We had just received the MR/RD waiver on 12/3/2009 for our daughter, Rebekah Faith Budd. Per the documentation and verbal guidance we have received from DDSN, there had been no indicated problems with her enrollment/status. Unfortunately, we received verbal notification on 2/10/2010 from her E.I., Carolyn Craft, that Rebekah is being disenrolled from the MR/RD waiver and must go back to CLTC PDN nursing care. I spent a frantic 2 days calling various state resources trying to understand why and how this could happen since we had not received any warning or guidance that our participation in the waiver was in jeopardy. One of those contacts, Angela Syphertt, instructed that I could send a letter of appeal to you.

We respectfully submit this letter and the attached supporting documentation as an appeal to the decision to disenroll Rebekah Faith Budd from the MR/RD Waiver program, and request that our appeal is accepted in this form as we have not yet received the official notification letter with the official appeal form/process.

Our appeal is based on four important factors.

Misinformation
Unfortunately, in the information that was communicated to us since Rebekah’s enrollment, we were never notified nor personally aware that we were not properly using the waiver. Please see Appendix A for our concerns.
Need for monthly medical supplies not covered under Blue Cross Blue Shield or Medicaid
There are a number of items that our daughter has gone without for months (even before we received the waiver) because we have been battling with the insurance companies and her DME. But, in an effort to be responsible with these state resources for which we are very grateful, we wanted to be deliberate in the items that we requested under the waiver and take our time to document things thoroughly. Of particular interest is her trach supply. According to the manufacturer of her primary trach type, the trach is only good for 28 days once opened. This poses a bit of a problem since we need at least 2 trachs to rotate per month and two back-up trachs for emergencies, and Medicaid will only cover 10 trachs per year! We have been recycling trachs past the recommended usage while we battled this, not realizing that this could be a requested item under ‘Specialized Medical Equipment, Supplies, and Assistive Technology Services’. There are other items too that our DME has not/will not supply that are necessary to Rebekah’s proper care. Please see attachments C & D for a complete description.
Need for Specialized Medical Equipment
We had already notified Rebekah’s E.I. that we have started the process to request funds for a high-low extension, car seat, and in-home monitoring device for Rebekah, as she is getting to the size where she needs certain equipment for her continued well-being. (I cannot attach the complete request list as we are still working with a DME to determine the best of two wheel chair systems for Rebekah, but I have the Speech Therapist supporting documentation and will have the Physical Therapist’s supporting documentation very soon. I would be happy to supply all of these if you need it for your appeal decision.) We also just spent $300 out-of-pocket co-pay for Rebekah’s cranial remolding orthosis, not knowing that this might have been an item we could’ve requested under the waiver. As a final request in this area, Rebekah will continue to have the need for specialized medical equipment as she gets older. The waiver will continue to give us the ability to access funds available for children like her in order to continue to meet her equipment needs during her lifetime.
Other waiver programs inadequately meet Rebekah’s needs
After reviewing with DHHS and DDSN representatives, none of the other waivers, would be able to provide both aspects of our needs – nursing services AND equipment/resources. Her best resource is the MR/RD Waiver and, as a qualifiable participant, we believe she should remain enrolled.

Repercussions to Rebekah’s disenrollement include:

Probably loss of approximately 25% of Rebekah’s nursing care - If Rebekah were to be taken off the MR/RD waiver, we would lose almost 25% of her nursing care allotment (from 42 to 32 hours), as the CLTC had previously only approved her for 32 hours and we received verbal confirmation from the CLTC case manager, Julia Robison, that that would probably continue to be the case. Anyone who took a look at her nurse’s notes would be able to see that she is a very time-intensive little girl who should receive the maximum number of nursing hours available. In-home Nursing Care is saving thousands of dollars by keeping her out of the hospital.
Inability for us to provide Rebekah with the equipment she needs as determined by her therapists and doctors, including monthly medical supplies that are necessary for life support (trachs) and her continued health and well-being.
The necessity for us to restart the painful and long process to reapply for the MR/RD waiver, which seems an unnecessary process for all of us given that her condition is lifelong, not expected to change, and she would still meet the requirements (we would just have to go on the waiting list).

Please see Table 1 for more details on each point.

Thank you very much for your consideration of our appeal. Please do not hesitate to contact either of us if you have any questions at all.

Susan K. Budd - Mother Michael K. Budd - Father

Table 1 – MR/RD Waiver Appeal Supporting Documentation

Appendix A – Waiver Specifications

Mental Retardation / Related Disabilities Waiver Info Sheet and Services: This was the form given to us when we received waiver services. Nursing Services is clearly indicated on this list. We were in the process of applying for Specialized Medical Equipment, Supplies, and Assistive Technology Services but were never informed that the Nursing Services do not count as a waiver service even though they are clearly listed here.
4/09 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 - Disenrollments: Excerpts
Per the verbiage on this form, we made the assumption that the Nursing Services on the MR/RD Waiver Info Sheet and Services (Appendix A, Attachment 1) were equivalent to receiving services funded through the waiver, so we did not feel an urgent need to request supplies under the Specialized Medical Equipment, Supplies, and Assistive Technology Services.
2010 HCBS MR/RD Waiver Application Excerpts Effective 1/10/2010:
Please see Appendix A, Attachment 3 Divider Sheet for a list of highlighted points and the sections of the document being questioned. I cannot find online any documentation supportive of the efforts to have Rebekah disenrolled from the MR/RD Waiver Program.

Appendix B - Nursing

A Day In The Life of Rebekah:
A look at one day of nursing notes (a THIRD of her day) to see how time-intensive her care is. Please read the notes on the Divider Page discussing the benefits of her MR/RD Waiver nursing services over other options.

Appendix C – Equipment

Letter of Medical Necessity for Equipment:
This is a medical order and request of items we have been unable to get through Rebekah’s current DME provider, along with the required medical justification.
Sample of 2010 Medicaid DME Fee Schedule:
This is a sample of the DME Fee Schedule showing that some of Rebekah’s doctor-ordered equipment is not completely covered under her Medicaid plan.
Supporting Therapist Documentation:
PT and Speech Therapists justification regarding the procurement of Assistive Technology for Rebekah.
4/09 MR/RD Waiver Manual Ch 10 for Equipment-Relates Waiver Services Excerpt:
We definitely need equipment that would qualify, but we also have not received enough Service Coordinator assistance in finding a provider who will work with us to procure the insurance denial letters.

cc: Angela Syphertt; Carolyn Craft; Janet Priest

APPENDIX A
WAIVER SPECIFICATIONS
1. MR/RD Waiver Info Sheet and Services
2. April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 Disenrollments Excerpts
3. 2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010

APPENDIX A – Attachment 1
MR/RD Waiver Info Sheet and Services

Points of Interest:
• This is the form we received when Rebekah got on the waiver in December 2009.
• Based on this form, she meets participation requirements and none of the termination requirements considering that nursing services is clearly listed as a waiver service.

APPENDIX A – Attachment 2
April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 – Disenrollments Excerpts

Points of Interest:
• Page 1 - MR/RD Waiver recipients must be given written notice of disenrollment and appeal process before proceeding with disenrollment (Rebekah does NOT meet one of the reasons not requiring a 10 day notice). We have only received phone calls, yet her waiver participation is placed ‘on hold’.
• Page 1-2 - Rebekah HAS been receiving services funded through the waiver on a weekly basis. Nursing care is not listed as an exception to this in any online documentation or anything we have received.
• Page 7 - We were verbally instructed to pursue a different route of appeal than that listed in Chapter 7.
• Rebekah does not meet the requirements for automatic disenrollment as described in this document.

APPENDIX A – Attachment 3
2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010

Points of Interest:
• Page 1 - Major Changes section still clearly lists Nursing as a waiver service.
• Page 2 - Rebekah STILL meets the ICF-MR level of care criteria (and will continue to meet it). These services are available to people like her and will help us prevent institutionalization.
• Page 3 - Transition plan states that “all current participants will remain appropriate to continue in the MR/RD waiver.” Rebekah was a participant prior to the effective date of this HCBS Waiver Application.
• Page 3 - While the verbiage “the State does not intend to alter the specific service limits to offer exceptions” is intended to apply to participants seeking benefits beyond the waiver, I would argue that it should also mean that the state will not create an exception just to remove a participant that is otherwise meeting all of the enrollment specifications.
• Page 3-4 - The target group is ‘Mental Retardation’ ages 0+. Obviously, the needs of an infant are different than that of a toddler or adult. But the waiver still states that this is applicable to infants too. To remove an infant that will have the same upcoming needs as a current participant a few years older just because they are not ordering a monthly supply of diapers and wipes is a direct contradiction to the target group definition.
• Page 4 - Rebekah DOES receive the minimum number of services (one) in the provision of waiver services (monthly). There is no indication that this minimum number of one cannot be nursing.
• Page 5-6 - We were actually beginning the process to apply for Specialized medical Equipment, Supplies and Assistive Technology when we were told she is being disenrolled. She will most definitely need these services. In addition, I anticipate future Environmental Modification needs and we would absolutely LOVE Respite Care (but were told that this is not available even though it is clearly listed).
• Page 6 - There is no indication that if a user can qualify for CLTC nursing, that they may not receive those services through the MR/RD waiver. Aren’t all MR/RD waiver participants Medicaid eligible and, therefore, qualifiable for nursing through other programs?
• Page 7 – Rebekah definitely has a list of needs that will require assistance under the Specialized Medical Equipment, Supplies, and Assistive Technology Service Specification. Appendix C provides a nice “starter” list of these items.

APPENDIX B
Nursing
A Day In The Life of Rebekah – A look at one day of nursing notes, a THIRD of her day, to see how time-intensive her care is.

Points of Interest:

Rebekah has spent the last week sick with RSV…but she has spent it AT HOME! Why? Because of a combination of her monthly Synagis shots for RSV AND because of in-home nursing care. Were it not for having nursing care, both my husband and I would have to admit Rebekah to the hospital out of sheer exhaustion from her care. While sick, she has had to be suctioned many times and hour around the clock! She spent several days throwing up and needing constant clothing and bed sheet changes. The nurse has been critical to knowing if/when she should be admitted, and being able to care for her at home as much as possible. This has saved everyone THOUSANDS of dollars in medical bills!
Rebekah was briefly on CLTC –funded nursing before she obtained her MR/RD waiver spot. She received the CLTC nursing care shortly after a week-long hospital visit due to upper respiratory distress. Despite the evidence that her care is time-intensive, they only allotted her 32 hours of nursing care per week (with a maximum of 40 available, with appeal, I presume). We started out on the MR/RD waiver with the maximum 42 hours. This has been a tremendous help to us AND to Rebekah. During the last few months of nursing care, not only were we able to keep her home from the hospital through several illnesses, but she has been making strides towards some milestones because someone can spend the time working with her! What a blessing! Please do not make her go back to CLTC. We will not only lose the equipment waiver options, but we could lose from 120 hours (2 hour difference in hours offered * 52 weeks) to 520 hours (10 hour difference in hours offered * 52 weeks/year) of nursing per year!

APPENDIX C
Equipment
1. Letter of Medical Necessity for Equipment
2. Sample of 2010 Medicaid DME Fee Schedule
3. Supporting Therapist Documentation
4. April 2009 MR/RD Waiver Manual Chapter 10 for Equipment-Related Waiver Services Excerpt

APPENDIX C – Attachment 1
Letter of Medical Necessity for Equipment

Points of Interest:
• There are several monthly and one-time needs not covered by insurance or current DME.
• This is, by no means, a complete list of medical equipment needs. This does not include the formal order for one-time adaptive-type equipment needs like wheel chair, bath seat, etc.
• An additional letter with product specifications will most likely be needed by a DME. This is not included.
• Other SC waiver programs will not give us an option to seek help purchasing/procuring the items listed in this letter.

APPENDIX C – Attachment 2
Sample of 2010 Medicaid DME Fee Schedule

Points of Interest:
• This is not an inclusive list, but is simply an example of some of the Medical Necessity letter equipment items clearly not being covered under Medicaid.

APPENDIX C – Attachment 3
Supporting Therapist Documentation

Points of Interest:
• Attached are the Physical Therapist and Speech Therapist assessments regarding the need for equipment. Not included is the Occupational therapist assessment since she was recently assigned a new OT therapist.
• We have already begun the process to procure several pieces of equipment for Rebekah including a wheel chair, high-low extension, bath seat, therapeutic equipment and car seat. We are expecting some insurance denial letters as a result of this process. Once the denial letters are received, we would like to seek out trying to get them under the Specialized Medical Equipment, Supplies and Assistive Technology waiver service.

APPENDIX C – Attachment 4
April 2009 MR/RD Waiver Manual – Chapter 10 for Equipment-Related Waiver Services Excerpt

Points of Interest:
• Page 1 - Rebekah has several items listed on her Letter of Medical Necessity for Equipment that meet the requirement of “Specialized medical equipment, supplies, and assistive technology…includes items necessary for life support, ancillary supplies and equipment necessary to the proper functioning of such items, and durable and non-durable medical equipment not available under State Plan Medicaid.”
• Page 2 - We have not received enough support/help in the area of a Service Coordinator OR DME willing to assist us in initiating the SCDHHS Medicaid Certificate of Medical Necessity Form. We are told to get denial letters from the insurance company but that does not seem to follow the procedure laid out in the manual.

Today is a Gift!

2009-12-05T23:16:00.007-05:00

12/5/09

On our way to Ohio Thanksgiving week, the boys were watching Kung Fu panda and the wise old master said "Today is a gift, that is why they call it the present." I changed my facebook status to see if anyone could correctly name the source of that quote and, much to my surprise, it WASN'T the master, it was Eleanor Roosevelt! ;-) It actually comes from a longer poem. But the part I love is:

Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That is why they call it the present.
- Eleanor Roosevelt

Speaking of gifts, Isaiah had a birthday party last night at a local inflatables place for preschoolers called Giggle Bugs. OK, his birthday was 11/28, but we believe in procrastinating in our house. He had a choice of a party, or a present. He's not stupid, he picked the party so he could have lots of presents!

Anyway, we were all there, including Rebekah. A lady came up to me at one point and asked if I minded telling her about Rebekah. Rebekah was in the car seat in the stroller decked out with her 'cranial remolding orthosis' (Starlight side-opening band helmet), AFO's (ankle-foot orthodic splints - Jump Start Bunny in pink, of course), and, of course, her trach with the big old HME sticking out. She normally draws looks with just the trach, but today, she looked like a space cadet on a moon walk mission! (Couldn't resist the pun on inflatables/moon walks) :-) So I spent a few minutes telling her Rebekah's story and gave her my blog link so she could keep up with her. (Not that my blog is current, but I guess that will be my New Year's resolution! Then again... maybe not.) She asked me if I minded the looks (stares) and questions from people about Rebekah and I said that I didn't. I said that it gives me a chance to glorify God for our sweet precious gift, and to educate people on trisomy 18. (I don't expect anyone to feel sorry for us because of Rebekah. We love her so much and do believe she was given to us for a reason. So I really never have an issue with educating people, and I hope it is a door to discussing God with them.)

Later that evening, I relayed the Giggle Bugs conversation with Michael, and he said that when you only expect 24 hours (or less), then every day is a gift! If you recall, Rebekah's beginning was so rough, she stopped breathing before the cord was even cut at birth. The first several months were very, very hard. Today, when we think about Rebekah and all that she has already overcome, we certainly believe with all of our hearts that each day with her is a gift. And that is despite the countless doctor visits, hospital visits, calendar/lifestyle changes... (You see, when you have a 'medically fragile child', your time is filled up as care-provider and nurse, you leave the house less, invite fewer people over, inevitably miss things because you don't want to bring your child, have less 'me-time', and you can't just have anyone watch them... Lots of people probably really don't think about the massive family changes that result when having a special needs child. The divorce rate for couples with a special needs child is VERY high and scary!) But really, because of where our 'center' is based, this current life has become our new 'norm' and we've adjusted and move on happily - because it is so much better than the alternative!

But the whole conversation really got me thinking...

As much as Rebekah's life has caused what others would see as inconvenience and heartache, we have, indeed, celebrated everyday with her and do not complain because we feel blessed. But what if I applied that concept/behavior to my WHOLE life? I mean, setting Rebekah aside for a minute, what is the focus of my own attitude and view of my personal life?

Well, I don't do such a great job there. I am frequently unhappy with the way things go, stressed out and frustrated, wishing I had this or that, or unhappy with someone else in my life. But WHY? Well, I guess in my mind, I have an expectation that these other events and people in my life will be there for the long haul. So I have 'time' to be mad about it today because I can do something different tomorrow. But the truth is, NONE of us are guaranteed another day!

In fact, my cousin's ex-wife tragically died this past week from a head trauma falling down steps outside her house. She was in her early 30's. Her four year old was with her at the time. I am SURE she didn't wake up that day thinking 'today could be it!' And I don't know about her, but I know that I personally don't live each day like it could be it.

But between her accident and having this gift conversation with Michael, I've been thinking real hard about my attitude of gratitude. There are some people that I am harboring anger towards, there are some personal behaviors I have not been too happy with, and I certainly have not been modeling to my kids the level of gratitude I expect from them! So I am going to try to start each day making this part of my morning prayer - that I would truly believe and live like today is a gift!

This is the day the Lord has made, Let us be glad and rejoice in it.
Psalm 118:24

Each day truly is a blessing and a gift! And I am going to be more committed to living each day like I really believe that statement.

Don't waste your life thinking you'll fix it tomorrow, deal with your hurt tomorrow, get right with God tomorrow. TODAY is the gift. So why don't you join me on the quest to appreciate today for the blessing it is...

Teach us to realize the brevity of life, so that we may grow in wisdom.
Psalm 90:12

Closure

2009-11-25T14:08:00.002-05:00

My mother-in-law, Mary, (who is in her 80's) tells me about her friends and a cousin that have experienced a miscarriage or still birth. When we were pregnant with Rebekah, she was very concerned for us because she didn't want us to have the same experience. You see, back then it was extremely common to whisk the baby away before the mother could even lay eyes on the baby. Several of her friends has wishfully stated things like "If only I had gotten to hold my baby.", "If only I at least had a picture." Her cousin, over 50 years ago, had such an experience and, to this day, still cries when she thinks of her baby! She still says, "I never even got to hold him."

Yesterday, another beautiful t-18 angel left this earth. Hope was her name, and she was loved by many. There is a part to Hope's tale that makes me very, very angry. The hospital did not allow her parents to take pictures of her after her birth! Is that not insane? Now, I realize that I am in the USA and Hope was born in South Africa, but the psychology of grievance does not change no matter what country we are in, what socio-economic class we may belong to, what age we are, what race we are... And in order to mentally process 'death', we need closure. Sure, Florisha (the mom) got to see her and hold her, but to not be able to have any keepsakes to take is just plain WRONG! So this left me with a very bitter taste in my mouth going to bed last night.

I did find out today that they are going to let her see and take pictures of Hope tomorrow. But it is still insane that this was not the case yesterday.

It's little things like this that make me really worry about the human race. Are we so far gone, so cold-hearted, that we cannot recognize the beauty and wonder in each of God's creations? We are all fearfully and wonderfully made - whether 'perfect' or 'imperfect', and each has a place and purpose on this earth. No MAN should make a determination of the value of any given life. It is not our place to do this.

Grins & Giggles

2009-11-19T10:11:00.006-05:00

Three weeks ago, our SC Community Long Term Waiver was finally approved for 30 hours of nursing care per week! Life is finally getting back to a more 'normal' basis AND I now have another person here devoted to nothing but Rebekah's care and well-being! Her nurse, Becky, has been a godsend, and she is doing a fantastic job of working with Rebekah on all of her therapies. Rebekah is getting so much more one-on-one help and has progressed so much in just the last three weeks!

Just one of the areas Rebekah has really blossomed in is her response to things. Before, we had to work super hard to get even a little smile out of her. She is now grinning and giggling at people, things, her brothers getting yelled at (no kidding - she smiles everytime they get in trouble!), she will follow us with her gaze, smile at someone who unexpectedly walks by, and let us know when something tickles her fancy. She is such a happy little baby now, it can't help but make your heart sing praises when you see her!

Here is a video of her. Remember, because of her trach, you cannot hear her. But if you could, I KNOW you would hear laughter!

We are so blessed to be able to experience this! Everyone in our house is now full of grins & giggles too. :-)

Please take a moment on youtube to rate the video and leave a comment so that others traveling this road will find Rebekah's video on a search and will have some positive things to find when looking for trisomy 18 or t-18 resources. (You can get to the youtube video by selecting the blog title - Grins & Giggles.)

A Different Dream for My Child

2009-11-05T22:20:00.004-05:00

It's been an incredibly draining 6 month roller coaster ride. We have been in the hospital 3 times now, and may be looking at a fourth time as sweet Rebekah seems to be getting sick again. I am not sure I am ready for this again.

I was in a Christian bookstore today with my friend Mindy looking for a Bible study to do. I came across a book called A Different Dream for My Child (Meditations for parents of critically or chronically ill children). I haven't even read the first chapter but browsed to the chapter prayer which caught my attention in the bookstore:
"Dear God, my heart is breaking for my child today. My spirit is crished by fear of what lies ahead. I can't find words to pray, Father, so please pray for me. Be near to my child and be near to me today as your word promises."

The Lord is near to the brokenhearted
And saves those who are crushed in spirit.
Psalm 34:18 (NASB)

This is a book I think all of my T-18 Mommy friends need to get too.

Why me, Lord?

2009-11-04T22:00:00.005-05:00

We got back from a fun weekend of family, candy, fun, and - yes - a little rain for the trick-or-treating activities. Our little Josiah took the stamina prize by outlasting most of his big brothers around the neighborhood. I couldn't believe how far he walked! And he managed to get more candy than his brothers with fewer stops (we were at a slightly slower pace so he did miss a few houses along the way) because of his absolute cuteness. :-)

Our kids: Josiah - the duck (he got a little upset when people called him a chicken, lol!), Isaiah - the Indian (this was a school Thanksgiving concert costume, not even a Halloween costume! But he just didn't want to put anything else on...), Jeremiah - Stitch, Elijah - The Headless Horsemen. My nephews are Ben (football ball, can't remember team) and Nick (the 'Unknown Ghoul' with the red eyes).

Josiah and Rebekah

Rebekah, the pink leopard...

On Sunday, we went to my brother's church in GA so that their small group and a few friends that knew about Rebekah could finally see who they have been praying for for all these months. One lady was actually brought to tears upon the sight of Rebekah and was happy to meet our little miracle.

When we arrived back in SC, Michael and I were talking. He looked at me and said, "Did you ever ask yourself, 'Why me?'" I gave him a quizzical look thinking to myself - oh yeah, every day! But I was thinking about the stress and chaos we have now.

Michael continued, "Did you ever ask yourself 'Why me, Lord? Why have you blessed us with this incredible little girl who can bring a grown women to tears (of joy)?'" Wow! I just love my husband! His optimistic perspective on life has done a lot to change me from a glass-half-empty kind of person to a glass-half-full one.

I agreed with him and thought about this for several days now. Despite the ups and downs and inevitible future that lies before us with a child considered "incompatible with life", we truly are blessed. I do not, and cannot, comprehend why we have been chosen to be her earthly caregivers. And it doesn't really matter either. For she has made me a better person, and I love her beyond words. She has inspired MANY to prayer and care, and has been a blessing to far more people than just us.

So I do ask, "Why me, Lord? I feel so insignificant, so powerless. Why have you blessed ME with this incredible gift? Please, help me to use Rebekah's life to bless others as well. Please use her to bring people closer to you. "

He answers that prayer every day.

Another Holiday, Another Hospital Visit

2009-09-07T21:40:00.003-04:00

Rebekah - 140 days old on 9/7/09.

Checking out the mobile in her hospital room.

I hadn't blogged all summer partly because my life with 5 kids (including my lovely special needs sweet baby girl) has been insanely crazy this summer, and partly because I never finished Rebekah's LAST hospital stay story and I did NOT know that you can post entries to blogger and later change the date to rearrange the order of the posts! So I have been waiting for free time that never occurred to finish the June hospital stay story when I could've been blogging all along! Oh well, I'm not really much of a blogger anyway!

So here it is Labor Day weekend and, surprise, we are back in the hospital! Over the last week and a half, Rebekah's mucus secretions have been getting progressively worse and we have had her on oxygen pretty much around the clock. That is not normal, but she didn't have a fever, the secretions were all clear, and there wasn't really an obvious sign of illness.

Sunday morning, Rebekah seemed to be working hard to breathe. Her SATS (on fairly high oxygen for her) had been hovering in the low 90's and I couldn't really get them up. She was being suctioned probably 4-5 times an hour, and at night we were having to suction much more than usual. She used to go pretty much to whole night without suctioning.

I called hospice and asked them to send a nurse to assess her. The supervisor answered and had a preconceived notion that Rebekah's symptoms were related to congestive heart failure. I was confused by this since she got an A from the cardiologist months ago and we were told not to come back! So she sends over a nurse (the on call nurse who had never seen Rebekah before), who listens to Rebekah and agrees that she is working much too bard to breathe. She explained that she heard fluid in Rebekah's lungs and heart and that she probably did have a congested heart. I had to either take her off hospice and take her to the ER, or manage her care at home through hospice care (expecting her to progressively get worse).

My heart, at the point, dropped into my stomach. Worried if we had done something terribly wrong by letting this go all week, I asked how bad she thought it was. She said she didn't think it was too late to reverse it, but that the congestion was probably due to excess fluid, kidney problems, etc. Oh yeah, and the fact that Rebekah has trisomy 18 and that is a common problem. (Think she may have talked to the supervisor and come with a preconceived notion of what she was dealing with?) While she was very nice and professional, she did pretty much end the conversation with telling me that if I take her off hospice to go, I probably will want to switch her back to regular home health care afterwards because those nurses would be in a better position to do blood draws, etc from home. I think I was getting the 'don't come back' speech.

I kicked it into high gear and got her off to the hospital while Michael took the boys to church. We tossed around having all of us go, but it was a good thing that didn't happen because the hospital has prepared for a flu pandemic by not allowing anyone under 18 to visit any of the pediatric floors.

I called the doc on the way to the hospital - got to bypass the ER and met him in the hospital lobby. He discussed her status with the ped floor docs and they decided to admit her to the Pediatric ICU due to her trach and the excessive suctioning requirements. Oh, did I mention that he almsot laughed at the congested heart comment? He said there wasn't anyway to determine if what we were hearing was congested heart because it was too difficult to differentiate the noise from the lungs vs. heart and that it was most likely just the lungs.

Well, a chest x-ray, several blood tests, and multiple other illness tests later, we are still in the hospital without an exact diagnosis (probable virus - just has to run its course), but we do know that it isn't any of the 'big' ones (especially for a trach baby) like pneumonia, flu, rsv, etc.

So now we just wait... hoping she starts to show some improvement so we can move her care to back home.

My baby girl is strong and will get through this just fine. But I really hope we have not started 'another holiday, another hospital visit' trend!

A Little Time For Pampering...and Embarrassment

2009-09-05T23:30:00.001-04:00

I FINALLY got the opportunity to use a 40th birthday present (from last October!!) from a great friend of mine. She got me a deluxe manicure and pedicure. Saturday of Labor Day weekend was the first time I truly have had a large enough block of free time (since Oct 08!!) to go and enjoy some pampering, sans kids and hubby.

I upgraded to the french mani & pedi, and decided to throw in a brow wax.

Embarrassing Moment #1 -
I got my eye brows waxed by a cute, thin, young Asian lady. Upon finishing my eyebrows, she said, "You want your lip done too?" Well, my hair is fairly light, so I have never had the area above my upper lip waxed. So I said no. She looked at me and in a very matter-of-fact voice stated, "You need it done."
Ouch! Guess along with being 40 is the realization that I now need my 'mustache' waxed!

Embarrassing Moment #2 -
Saturday night, we went over to a friend's house to hang out around their fire pit on such a great evening. Soon, we were passing the box of mosquito wipes around... you know, the kind that come in a container similar to Clorox wipes or hand wipes. So I pull one out and accidentally pulled a second one almost the whole way out. I decided to shove it back down the little hole. At this point, I shoved a little hard and my beautifully manicured finger goes down past the 'teeth' of the container to hold it there in an uncomfortable lock. I felt like I had put my fingers in one of those Chinese 'finger cuffs' and was feeling pretty stupid. I tried to unobtrusively pull it out, but the painful grimace on my face said it all. So I had to confess my stupidity, and had a ruined french manicure and red hurting finger to show for it.

Of course, it didn't take much longer for at least half my nails to look just as bad. The process of washing your hands 50 times per day, cooking, cleaning, changing diapers, scrubbing toilets, doing laundry... just reminds me of why I haven't had my nails painted in over a year to begin with.

French Manicure?! Well, what's left of it.

The pedicure is still looking good. But Jeremiah thinks I now need to cut my toenails because they are too long. LOL!

My toenails have survived being painted.

Michael helping the boys roast marshmallows.

Chris and Payton

"Mini-Me" Elijah, who can't go anywhere without his laptop. He is so like his Mommy...

Lila Rocks!

2009-08-30T23:00:00.000-04:00

Our NILMDTS photographer and friend, Lila Armock, scored another winning photo shoot with the Budd Zoo (despite short attention spans and a short photo shoot window). The pictures were taken at Falls Park in downtown Greenville.

If you live in the Greenville, SC area, be sure to check out Lila's website and set up a photo shoot with her. You won't be disappointed!

Josiah - 2

Josiah

Isaiah - 4

Jeremiah - 6

Elijah - 8

Rebekah - 4 months

This picture captures the personalities of each of my kids!

What sweetness!

Wonder

2009-08-01T09:36:00.002-04:00

One of these days, I will finally finish my account of Rebekah's hospital stay. I have it all in a doc, just am not finding the time to get it moved over here and psot with pics. I really want to do this for future T-18 moms so they have something to validate there feelings and get a glimpse into what a t-18 world is like.

In the meantime, I had to post this song. It is incredible. How I love my little Rebekah and she is my "Wonder"...

"Wonder" by Natalie Merchant

Here are the lyrics:

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

newspapers ask
intimate questions
want confessions
they reach into my head
to steal the glory
of my story

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

people see me
as a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of god's own creation
and as far as you can see you can offer me no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as she came to my mother
"know this child will not suffer"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

more about "Natalie Merchant - Wonder", posted with vodpod

Two Operations and a Breakdown: June 1-4

2009-06-26T11:12:00.010-04:00

This is a summary of what happened right before and after the trach/g-tube operation...

6/1 Day 42 and Day 13 in the Hospital

6/1/09 4 pm - Rebekah's surgery is tomorrow (tentatively 11:30 am) instead of today.
To make a long story short, we have been struggling over the idea of having a g-tube put in at the same time. Most trach babies end up with g-tubes. :-( After discussing it with probably 4 different doctors, we've decided to do it and hope she'll only need it on rare occassions.
Please be praying for a successful surgery and recovery. Thanks!
The surgery was delayed because to do the g-tube, we needed an upper GI study which showed... everything was 'normal'. What did you expect? :-)

Rebekah getting a bath to beautify for her upcoming surgery.

I recorded Rebekah several times trying to capture her crying and making a cute little noises. I was warned that the hardest part about traching your baby is that you no longer can hear them cry. I never did get the little whimpering noises, but here is a nice cry. I'm looking forward to the day I can hear her again!

6/2 Day 43 and Day 14 in the Hospital

6/2/09 8 am - Rebekah had a rough night of true apnea episodes where she did a lot of periodic breathing. We think it is because of her upper GI test yesterday and the stuff they use to see the GI track has caused her severe diarrhea and bad reflux. But she is doing better now and waiting for her surgery. I am really praying this solves her apnea episodes. This is also the last morning I am going to hear her sweet cries for a long time. :-( On a positive note, she is up to 5lb 9oz!

6/2 8:40 am - We've been bumped to 1 or 1:30pm. Guess the doc wants to make sure he gets a lunch break. :-D

6/2 11 am - As I sit here comforting Rebekah in her hunger waiting for her surgery, it just makes me appreciate how blessed we are here in the US. There are countries where millions of people are starving and mothers have to listen to their babies cry in hunger day after day until their poor little bodies give out. Thank you, Jesus, for blessing our life and for providing us with everything we need. I also have a t-18 mommy friend in the UK who has a little 3 year old boy that needs heart surgery. Do you know in the UK (yes a modern country with all of the medical capabilities we have) they will NOT do surgery on a t-18 child? They just rather let them die. That is another reason I am proud and blessed to live in the USA. I find it totally absurd that a child has shown that he is fighting to live and they won’t consider ‘fixing’ something that can be fixed. One of the doctors here also told me how in Europe and Japan, you will not find a lot of special needs kids – for the same reason. Their lives are not valued or sacred.

6/2 5:05 pm - According to the surgeon, Rebekah's surgery went "very well". She is breathing on her own. However, she is having episodes of bradycardia (slow heart rate). One was pretty deep and long. Her doctor said for a baby <2 style="font-weight: bold;">6/2 5:52 pm - Although the surgery went well, Rebekah's CO2 level is really high - she is not releasing CO2 efficiently when she exhales. They are trying to determine why but we only have a short time to resolve this before we have to consider ventilation. Needless to say, this is rather depressing and going down a path we didn't want to go on. So we need those prayer warriors to keep on praying. The next 48 hours are critical.

6/2 6:55 pm - Well, I've got bad news that is actually good news if they can figure out how to fix it. It turns out that the air is NOT passing through the trach! So Rebekah's drive to breathe is so strong that she is working to breath around the trach tubing. This most likely is the reason for the really high CO2 level, because she cannot breathe efficiently. They are working to figure out the problem and solution.

6/2 7:00 pm - The bad news is her Trach is blocked. The good news is her Trach is blocked and she is still breathing on her own and keeping her stats up. God just showed Psalms 20:7 to me in real time!!!! She is in His hands!!! Literally... It is NOT her day to go today and she WILL be sustained until they can figure out what went wrong. Isn't God so evident in this child's life? I hope everyone following this story realizes that they are seeing His miracles one after another and, if you have not submitted yourself to Jesus, you need to do it now. There is no better place to be than in the arms of my Lord and Savior!

6/2 8:16 pm - Rebekah is heading back to the OR for a second surgery to fix the trach.

6/2 9:46 pm - Rebekah came back to her room at about 9:20. The Trach had moved out of place, so the surgeon put it in the correct position and secured it with sutures. He said that would hold it. She is breathing on her own and stable. PTL!! Thank you for your many prayers. Good night to all.

Wheeling Rebekah to the first surgery. I cried as I left her there.

Recovering from surgery #1.

6/3 Day 44 and Day 15 in the Hospital

6/3 9:35 am - Rebekah is having some incidents of low oxygen levels and heart rate, but is self-correcting for the most part. We are just going to have to wait out the next 2 days and trust that this will improve as she completely recovers from 2 surgeries. I had to go home last night to relieve the babysitter. Michael truly felt he was witnessing a miracle as Rebekah breathed through two obstructions until her 2nd surgery.

Feeling a little more alert after two rounds of anesthesia are finally starting to wear off.

6/4 Day 45 and Day 16 in the Hospital

6/4 9:47 am - Not much to update other than Rebekah is stable and we are waiting for her '48 hour' period to end. When she goes into a deep sleep, she is still having some issues, but if they continue past tonight, we can consider putting her back on caffeine to see if it helps. Overall though, the trach is definitely making it easier for her to breathe. Care is a little overwhelming, but I know it will become easier over time. We've been using the g-tube to feed her. At some point today we will try a bottle.

Summary of the Day:
We tried giving Rebekah her first bottle today. We only did 1 ounce. She seemed to swallow well, but did have a lot more fluid to suck out of her trach after eating. It was undetermined if it was milk or just watery mucous. So we’ll stick with the g-tube today and go for a swallow test tomorrow to see if she is aspirating.

I had a meltdown today, in the hospital. Luckily my friend Renae Bradley (Her son Dawson is 3 and has T-18) was here to lend me a shoulder to cry on and great advice on how to deal with the hospital. Rebekah was having a lot of bradycardia events, and I felt like no one was watching over her or checking on her when her monitor would go off. Consequently, I am on pins and needles here at the hospital; feeling like I cannot even leave the room for a few minutes for fear that no one will be there for my poor baby. Also, trach and g-tube care is not simply common sense. She’s only had these things for a few days and I have received little training on them, yet I feel kind of abandoned and left to deal with her alone. So after talking to one of the managers, I feel a little better and she assured me that I should have enough confidence that if I even wanted to leave the unit and sleep at home at night, Rebekah would be taken care of. I don’t think I would ever want to do that, but I do hope my trust is restored enough that I COULD do that if I really wanted to.

Added note: The nurses at the Greenville Children's Hospital are wonderful and I am sure they would not willfully do anything to harm my child. But days and days of stress and no sleep make one very negative and I was at one of those points. I am posting this as it documents the feelings I was going through, but know that I do have full confidence in the PICU staff.

So back to her bradycardia… we started her back up on caffeine mid-afternoon. We’ll have to see if that helps, but the doctor isn’t too hopeful. He doesn’t think the caffeine will work on her. He said we could put her on a respirator, but that is going down a path we decided quite some time ago that we did not want to go down. I feel like we’re back to square one, and I have to be honest, I feel just a little abandoned by God right now. No, my faith won’t stop and I won’t become bitter and angry, because I always knew that Rebekah was being entrusted to us for a short time. But with all the miracles that have occurred along the way, it just seems like a cruel joke to be back at the point we started at. We would not have had a tracheostomy in the first place if the test results hadn’t come back as they did – that the majority of the problem was obstructive.

So when Michael got to the hospital, he sent me home and told me to enjoy the boys. I looked tired, I was emotional, and I wasn’t handing all this as well as I could. I think stress and continued lack of sleep is just eating at me. I simply cannot sleep when I’m in the hospital. I wake up all night long, just can’t help it. But I tried to enjoy the evening. We all talked to Grandma Kraieski on phone. During Isaiah’s conversation, Grandma wanted to know if he was enjoying his school break for the summer. He kind of wavered on the answer announcing that he had to go back in the fall ‘to get more experience’. LOL. I wonder what kind of ‘experience’ you learn as a 4 year old? Then the boys and I curled up on my bed and watched Night at the Museum. I’m looking forward to a day we can all go somewhere again as a family and do something as simple as go see a movie together. They’d love to see the sequel!

My friend Renae came to visit Rebekah. Her and Angela, my two trisomy 18 moms here in Greenville, were our most frequent visitors during our month stay at the hospital!

This is Dawson (Renae's son), who is 3 1/2 with trisomy 18. They have a website called www.trisomy18hope.org. We are going to revamp it to include Rebekah and hopefully other living t-18 kids.

Bronchoscopy & Results

2009-06-13T11:28:00.011-04:00

5/27 - DAY 37 and Day 8 in the Hospital

5/27 2:18 pm - Great, great day today. Rebekah has gone over 24 hours without a major incident! Woo hoo! I'll be at the hospital through the night and tomorrow. I'm bored if anyone wants to stop by. PICU room 5617.

5/27 11:18 pm - This is the first day in over 5 weeks that I have allowed myself the luxury of not staring at an apnea or sat (oxygen) monitor every waking minute of the day. In fact, except for feedings, I have only occassionally glanced at the monitor. Never take for granted your healthy 'normal' children. Thank God for every 'normal' behavior you are blessed with, cherish even crying, temper tantrums, and over zealous speech.

Beautiful little Rebekah

5/28 - DAY 38 and Day 9 in the Hospital

5/28 2:30 pm PTL - we got the results from the bronchoscopy and it is ALL upper 'floppy' airway issues. Everything below the vocal cords looked well formed and very clear - this is great because it means that she does not appear to be aspirating when she eats and it makes a trach an option for her (which is probably what we will end up doing). They are sure that a trach will solve her apnea issues, but they are not sure how it will affect feeding. She does have some anatomical variations that complicate the feedings/breathing too. Please pray for wisdom on what we need to do and that God will continue to bless Rebekah and, if we go the trach route, keep everything else working like it already is. The trach is what they would recommend for 'normal’ children with the same floppy airway issues. It can be reversed as she gets bigger if she grows out of the problem. Although it has complications associated with it, it is a much better long term solution then a constant high pressure airflow that could cause future lung problems. The only down side is that we probably won't be able to get it scheduled before Tue and the recovery time is at least a week. :-( Guess its more hospital food...

5/28 11 pm - Stay here long enough in the hospital and you get to ‘move on up.’ There are two coveted rooms on the PICU floor – corner suites, if you will. One resident just moved out, so we are moving on up! We are now in the PICU room 5616. We have an extra chair, a more comfy bed, and a toilet that cannot be seen from the door. Our last room was square with one whole glass wall facing the PICU hallway and desk. It was exactly like being in a fishbowl! We are still close to the nurse station and main desk, but have a much smaller viewing area into our room from the hallway. I am so happy to have a little more privacy!

Getting set up for the bronchoscopy. I had to step outside during the procedure, but curiosity got the better of me and I went back in to watch it on the screen. It was quite interesting (but heart breaking to hear Rebekah screaming her head off). As the scope penetrates the vocal folds, you no longer hear the crying, just the rush of "mad" air coming out.

For the medically geeky, here is a copy of the bronchoscopy video.

5/29 - DAY 39 and Day 10 in the Hospital

Can you believe it, I actually did not report an update this day! Or take a picture. I have NO idea what I was doing this day.

5/30 - DAY 40 and Day 11 in the Hospital

5/30 4 pm – Looks like we are on the Monday 'wait list' for the tracheostomy. We'll find out sometime Monday morning what time it will occur. We will be in the hospital probably 2 more weeks after the surgery (barring complications) because it needs time to heal, we need to reestablish her swallowing with the trach, and we need to learn how to care for it. Please be in prayer that this will not mess up her eating and that there will be no further complications and this will resolve all of the apnea issues. If all goes well, this will give us mobility again and help us to be a family once again doing things together and taking her places with us. The high flow air scenario just wasn't going to work long term or be portable for us. Our greatest risk right now is that the trach will increase her probability of aspirating and result in having to tube feed her. We are praying that God will allow her to continue eating by mouth, which she is so awesomely doing right now! Since we’ve been in the hospital, her average feeding has increased from 1.5 ounces to over 2 ounces per feed, and we’ve even had some 3 ounce feedings!

The conclusion from Rebekah’s sleep study is that she is experiencing all obstructive apnea. The doctor’s recommendation was to stop her caffeine as we move forward. However, it is not with 100% accuracy that we can say she does not have any central apnea. It could be that the obstructive apnea is so bad that it is masking central apnea, or that her caffeine actually is taking care of the central apnea. But while we are in the hospital, we are experimenting to see if she can come off of it. Rebekah has been off her caffeine for several days now. She has been having a few oxygen desaturation issues with bradycardia (low heart rate) yesterday and today, but it is hard to tell if that is a factor because of the caffeine working its way out of her system or that the high flow nasal cannula just isn’t 100% effective (which we already know) or some other unknown factor. I’m somewhat on pins and needles today just wondering what will happen as it completely works its way out of her system. But this is something we can easily start her back up on if we need to.

Rebekah is thought to have laryngotracheomalacia (floppy airways) but a second opinion said that her throat looked pretty good but was collapsing because of a blockage further up that was causing extreme negative pressure on her airway - most likely that blockage is her tongue. She has micrognathia (very small lower jaw) but a normal tongue, so the tongue falls back and blocks her airway. If she were older, there are a few different surgeries we could consider that would resolve the problem. However, for various reasons, they are not an option for a 1 month old. So this other doctor is also making a recommendation for a trach. On the positive side, this is a good sign that we could have the trach removed in the future and, if she grows normally (which is not expected in a t-18 child), she might even outgrow the source of the problem and not need any further surgery except to close up the trach hole.

During her swallow study, it was shown that because of Rebekah’s small lower jaw, large tongue, and some other minor anomalies, she has a higher risk factor for aspirating when she eats. When she swallows, what she swallows actually penetrates the vocal folds (this is not normal), but does not actually go down her trachea. We know from chest x-rays, the bronchoscopy, and the swallow study that she definitely is not aspirating when eating (but remains at risk). However, with the tracheostomy, the pressure in her trachea is going to be different and we may or may not create a problem with her current swallow pattern. After she recovers, we will need to do an additional swallow study and see what happens. We are praying that her body will correctly compensate and this will not be a risk. We are so in awe of what God has done so far for Rebekah – compared to what I read about t-18 children, it is amazing that she is feeding so well by mouth, and eating enough to not just maintain but grow at a healthy rate. It would be somewhat devastating to go from being able to completely feed her by mouth to getting a g-tube (a feeding tube surgically placed directly into the stomach) to feed her. But this is a risk worth taking when we consider current quality of life for her and for our family.

Out of all of the things that should be wrong with Rebekah, to have a trach possibly be the only thing she really needs right now is, well, a miracle! Time will only tell, but if the trach does not cause a feeding issue and completely solves the apnea issue, this will hopefully buy us much precious quality time with our sweet daughter that would not be otherwise possible. We are so looking forward to being together again as a family – and actually being able to take Rebekah places with us! We have been praying that this summer can be a summer in which we create some beautiful family moments.

Everyone making themselves at home in the PICU.

Mommy feeding Rebekah dinner.

Life must go on outside of the hospital! Michael took Elijah and his brothers to his cubscout graduation picnic. He was a 'Wolf' (2nd grade) and is now a 'Bear' (3rd grade).

Michael with Josiah and Isaiah at the picnic. (Susan was stuck in the hospital.)

5/31 - DAY 41 and Day 12 in the Hospital

Also a day I didn't report anything on facebook! The boys came to visit again and took turns holding Rebekah.

"Ewwww, Rebekah's diaper stinks!" (A friend noted that Rebekah looks like she is actually laughing at Isaiah.)

The Apnea Study

2009-06-12T21:02:00.007-04:00

The 'books' will tell you that for the trisomy 18 babies that make it to birth, 90-95% of them will die before they are 1 year old. The primary causes of death are usually quoted as major heart defects or central apnea. Central apnea is where the brain is not telling the body to breath or the heart to beat while a person is asleep. Many of the doctors think Rebekah's issue is probably central apnea and there will not be an easy solution. We are hoping for a different story. This is what happened the day of and following the sleep study until we had an apnea diagnosis of central versus obstructive apnea.

5/22/09 – DAY 32 and Day 3 in the Hospital

5/22 4:12 pm - PTL! Today has been a great day! The current intervention continues to be extremely successful - we've gone from >300 'incidents' (with at least 10 full blown blue spells) in a 24 hour period to only 6-7 incidents with only 1 short blue spell. What a break! She had her first bottle after 36 hours of not eating and for the first time did not desat during the feeding. The challenge will be duplicating the current process at home since she is using a machine that isn't used in homecare (hi flow nasal canula) and her size is making cpap at home something that might not be doable. We have the sleep study tonight and more studies next Tue. We will be here into Wed unless they think up more studies.

Pretty in pink!

How do I eat with all this stuff on my head?

All ready for the sleep study.

5/23/09 – DAY 33 and Day 4 in the Hospital

5/23 9:40 am - I backed into the pizza delivery guy the other day who decided to street park behind our driveway just as I was backing out of it. Then I dropped my cell phone in the bathtub while giving the boys a bath. ~:-/ But at least I am getting some sleep finally!

5/23 9:50 pm - Update by Michael: We're ending another pretty good day. Our only "real" incident occurred during an experiment with a set up that would be easier to take home, so we're back to the 5 liter flow which seems to still be working well. I realized tonight (with Mark and Amy) that being here alone with Rebekah has helped Susan and me to focus on what she is doing. That focused attention has allowed us to see her obstruction patterns. The challenge is resolving the obstruction issue in a way we can take home. Tonight I am praying for the answer to that question.

The morning after the sleep study, we had to clean all the goop out of her hair. I think it actually took several days and baths to to get it all out!

Rebekah had to get a new IV line today.

My brother and sister-in-law stayed the weekend and brought their dog (and kids). Josiah loves the dog and apparantly the dog crate. He put himself in the crate and shut the door, then acted like a dog.

5/24/09 – DAY 34 and Day 5 in the Hospital

5/24 10:56 am - Update by Michael: Rebekah is eating exceptionally well today (60 cc's from a bottle twice) and she just weighed in at 5lbs 2 oz (3oz more than two days ago). She is back on a positive growth curve. PTL! She had some incidents last night, but they may have been caused by the nasal cannula falling out of her nose. Since it was retaped, we haven't had any problems. Susan and I will be switching places later today. In case your wondering, Rebekah was actually 5lbs. 4 oz., but we took off 2 oz. to account for what she just ate. For me to have the same percent increase in weight as 3 oz to her, I would have to put on 7 lbs.

5/24 7:20 pm - It's amazing what a few night of decent sleep can do for one's spirits! Well that and knowing that I have hundreds of prayer warriors out there and that I am a blessed child of God. :-) Ephesians 3:16 I pray that from his glorious, unlimited resources he will give you mighty inner strength through his Holy Spirit. Rebekah continues her great behavior and progress. We MAY be looking at a trach for a solution, but that answer will come after her Tue & Wed tests and meetings with the doctors. I'm just so happy that her problems are mostly physiological and a solution is in the near future!

Holding my baby girl...

Josiah helping out with the trash back at home. Gotta teach 'em early!

5/25/09 – DAY 35 and Day 6 in the Hospital

5/25 3:40pm - Dr. Gault (the sleep doctor) came in today just to see Rebekah! There are about 900 pages of a report to be reviewed but his preliminary report is... obstructive apnea! (not central which would be her brain function). I know we have to wait for the 'official' report, but this is AWESOME news! So another test will be added to the list and we will probably be here the whole week. But PTL for good news! Rebekah also had problems with desating this morning (her oxygen levels dropping), but it turns out that her nose was full of boogers. Once again - obstructive! Nose was cleaned out way back with a little tube thing and the humidity turned up on her high flow air. So far, no more episodes. And she is still eating great - about 2 ounces per feeding. WTG Rebekah!

Looking pretty for today's visitors!

Aunt Amy and Uncle Mark in the hospital room with Josiah.

Elijah, Isaiah, Josiah and cousin Nick.

Jeremiah and cousin Ben playing on my laptop in the hospital room. Thank goodness for wi-fi!

5/26/09 – DAY 36 and Day 7 in the Hospital

5/26 5:37 pm - The official word is definitely obstructive apnea! In fact, the doctor is pulling Rebekah off her caffeine. The most important test comes Thu - a bronchoscopy where a little camera will be inserted up her nose and down her wind pipe to below her vocal cords. We are so appreciative of all the support we've been receiving. We do still need a little more childcare help this week. Oh, and the doctor said that it is a significant finding that she does NOT have central apnea since she is a trisomy 18 child. Hip Hip Hooray! Your prayers are working and God is good!

Rebekah also had a swallow study today which showed some anomalies. In the swallow study, they mix barium in the formula, sit her up in a special chair, then take an x-ray movie of her swallowing. It's really quite fascinating! Anyway, her bottom jaw is small and her tongue too large for it. Her palate (roof of her mouth) is a little short, so when she swallows, she actually sometimes pushes the food up her nasal passage! This will probably mean she will be prone to sinus infections. She also swallows in a way that each swallow dips down to the vocal folds in the trachea, but doesn't necessarily penetrate it. But that means that she has a higher probability of aspirating and probably micro-aspirates. (Good thing she doesn't know this, because she's been doing a great job eating!) We were able to play around with some different nipples and find one that works best for making her swallows more 'normal'.

Sound asleep after the swallow test and a bath. Doesn't she look like a little rocker girl?

The Hospital Journey Begins...

2009-06-12T18:08:00.003-04:00

5/21/09 – DAY 31

5/21 12:45 am - For the last 2 weeks, especially the last 4 days, Rebekah has averaged probably at least one 'episode' per hour. We are in the Greenville Hospital PICU and the only intervention so far that we have had was to bump up her oxygen level to 2.0 liters flow (at home we only used .25-.5). They have kept the pressure this high but decreased the actual O2 level to 50%. Rebekah has gone over 3 hours now without incident! This is a positive sign that her 'problem' is obstructive and we will be able to find a manageable home solution for it. (That's from me, not any doctor.) I am feeling pretty positive right now.

5/21 8:30 am - We went 11 hours without an 'event'! PTL! And she did have a minor one around 8am, but it was definitely obstructive and I finally got someone else to SEE that and agree. Still didn't get to sleep though because they won't let me feed Rebekah. The air they are pumping into her nose is supposed to fill her stomach and make it upset so she has been 'fasting' since 8 last night and is not too happy about it so lots of hunger cries all night.

Michael enjoying the cozy hospital room guest bed.

5/21 12:15 pm - Today hasn't been quite as positive. Rebekah had quite a few events between 8-10 while in deep sleep. Most were caught pretty early. She was put on a positive air machine too at a higher rate and it doesn't seem to be making that much of a difference. We've also noticed Rebekah's face and neck are getting really puffy. Hoping it is from the IV and not some kidney thing going on. Haven't talked to the doctor.

5/21 6:10 pm - We'll be at the hospital through Tue for tests. Tomorrow night is the sleep study. This morning started out with many mild episodes between 8 and 2, but she's been episode free again for the past 4 hours. kind of strange. I will be going home this evening and Michael will be staying. We're in 5617 in PICU at Greenville Children's Hospital and guests are welcome to stop by. Thanks for all the care and prayers!

Saying goodbye to Rebekah for the night. :-(

5/21 10:25 pm - This is Michael. Susan is home snuggling with four precious little boys. Rebekah has only had 3 episodes in the last 8 hours. This is a huge improvement from Tuesday and Wednesday. As Rebekah and I said our good night prayers, we thanked God for providing us with her Mommy and four brothers, incredible friends and family, Daddy's flexible and understanding boss and co-workers and health insurance. That may sound silly, but I realized today how much I have taken healthcare for granted. Children around the world die everyday from far more "curable" problems than Trisomy 18. My cup overflows with God's blessings. If we were ever to write a book about this experience, we should call it "Trisomy 18 Through Faith and Facebook". :-) Goodnight and God bless to all of you who are sharing this journey with us. Michael

This post on facebook resulted in some great conversation and I have to brag a little about my wonderful husband, so I had to share some of it here...

Helen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.

Shelley: Mike. you and your wife are amazing. I am in awe of your relationship with each other, your children, your faith, and ability to share your life so openly. Thanks for the inspiration.you guys are in my thoughts daily.

Helen: Michael - ditto what Shelley said. I have learned so much about myself and my own faith by taking this FB journey with you and your amazing family. I have prayed more since you started sharing your story with us and can now say there is power in prayer. Whatever God has as His plan for our lives in prayer you will find the answer or come to understand the journey. Thank you.

Ellen: Health care is super important, doctors are great, but the Great Healer does it all. Love and prayers to you and your family. Thanks for sharing the journey.

Sheri: God is good all the time, Michael. Thank you for reminding us all of that.

Jeannette: Michael I love the name you would choose for your book :) God Bless you. We are looking at posibly going back in the hospital next week for more testing too. Wish we were closer. Have a good night.

Diane: Michael , All men should take lessons from you. What an amazing DAD and HUSBAND you are. Thanks for the inspiration your family has been to all of us following your journey. May God Continue to Bless you and your family. Hang in there, There are alot of people praying for all of you.

Michael: Ellen, your comment is right on. It reminds me of Psalms 20:7, "Some trust in chariots, and some in horses: but we trust in the name of the LORD our God." David doesn't say he doesn't use chariots and horses, but that his trust isn't in them. Likewise, we're using science and technology (healthcare), but our trust is in the Lord.

Jennifer: I love that verse too! We must lean our ladders on the only solid foundation....our Heavenly Father, all other things can falter and crumble.

Annie: That is a verse I often quoted about the chariots and horses when I was preg with my daughter Rachel who has trisomy 18 also! God bless you guys and give you the strength you need for this journey! We're in it too...with you =)

Tracy: Love the title of your book...how true it is. Glad that it seems that Rebekah is doing better and that Susan is getting some much needed rest. God Bless you all.

Christy: Michael & Susan...how awesome for FB and that you are willing to share your journey with us. Some people think FB is silly & why waste your time on it, but look what it can do. Spread God's love all over the world and connect lots of people. How many requests have been put out there & quickly responded to??? May God continue to bless your family and inspire and help others. It also helps us by staying in our prayer life to help others!

Can't wait to read that book!!! :)

Lila: Michael, you are just amazing. I am so blessed to know you and Susan!! Thanks for the update. And let me know when that book is about to go to print! Can I get an autograph from the authors??

Happy 1 Month Birthday Rebekah Budd! Sleep peacefully in God's hands!

A Day of Ups and Downs

2009-06-12T17:48:00.002-04:00

5/20/09 – DAY 30

5/20 1:46 am - My beloved Susan, I hope your having pleasant dreams that don't include any "beeping" sounds. I adore you. Michael (Michael stayed up with Rebekah all night so I could get a break. He prayed for supernatural strength to make it through the night and be able to function today. This morning he said he was feeling pretty good. :-) I've got the best hubby around and he's the best daddy too!)

5/20 7:53 am - Please keep praying for sweet Rebekah. Her 'episodes' are getting more frequent and worse. She is even having heart decelerations/oxygen drops while awake now too. It is a difficult pill to swallow that God has carried her this far and fixed so many broken things, but she may still only be here a very short time. My heart is just aching right now...

For I, the Lord your God, will hold your right hand, saying to you, "Fear not, I will help you." - Isaiah 41:13

Sweet Baby Rebekah

5/20 4:50 pm - For those who have offered to help with childcare, I have an immediate need and don't have time to find my phone list and call people. Rebekah is going to be admitted into the GHS Childrens PICU tonight - but this is a GOOD thing. Will explain in note to be posted shortly. Need someone to watch the boys at our house while we take her to the hospital. Not sure of time yet but sometime this evening.

The boys spending some time with Rebekah and saying goodbye as we prepared to leave for the hospital. Honestly, we had no idea when/if she would come home.

5/20 Summary from the hospital - Finally, I am getting some answers that I LIKE about Rebekah!

Michael and I have been fed up, stressed out, and sleep-deprived for awhile now. After spending these past few days with constant monitor alerts, we decided the laid back approach to seeing if Rebekah 'grows out of it' is just not working. She is having more frequent desaturations (oxygen saturation in blood) down to as low as 40's, should be in the 90's!) which are resulting in bradycardia (heart rate down to 59 beats per minute - should be in the 140's-160's!) and cyanosis (turning a nice shade of bluish-gray). Honestly, I thought I would be calling 911 today.

After calling the neonatologist who has been reviewing her apnea monitor data, we have come to the following conclusions (which still need to be 'proved' through farther testing).
- the caffeine has decreased her true 'central apnea' attacks where she would just stop breathing while asleep.
- the events that we are seeing an increase of are most likely related to 'obstructive apnea' because her breathing is not stopping during the events. She is desatting, then the heart rate is dropping. This indicates that she probably has a floppy airway or some other type of soft obstruction that is getting worse because she is getting a little bigger and her neck is getting fatter.
- we need some studies done in order to determine a course of treatment (CPAP, Bi-Pap, Trach - in that order).
- She could outgrow the obstructive apnea as she gets bigger and stronger. Leaving things status quo probably is going to result in an eventual 911 call.

Well, we have called the doctors and explained that her events are increasing and we are afraid that we are going to lose her if we wait until next week to do something about this. I don't know yet everything they are going to do, but it will include a sleep study (I think they are about 16 hours long), a swallow test, a ph test to check for reflux, an airway test, etc. They will start her in the children's area but, because of her precarious situation, I am more than sure they will admit her into PICU for these tests. The doctor has warned us that she will be there for probably about 6 days. :-(

So... please pray that we get some POSITIVE answers this time, that we find a solution/management plan for this, that God will continue to bless Rebekah by reversing any damage that may have been done from all the low oxygen levels. We may find out when it is all said and done that this is just who she is and there will be nothing we can do about it. But after having a heart healed, a kidney healed, and so many other things 'right', we will not accept that answer until it is obvious that that is the answer.

We will need help with childcare and some other things over the next week. To make things easier, if you can help out, please put your name and number in a response to this note with what you can or are willing to help with. I am not sure what our status is going to be.

Thank you so much everyone for your love, prayers, and care!

Rebekah getting a CT scan of her brain

Lethal Malformations

2009-06-12T11:36:00.003-04:00

5/19/09 – DAY 29

Here are some encouraging verses I received from a friend today.
"Now faith is being sure of what we hope for and certain of what we do not see" - Hebrews 11:1

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." - Zephaniah 3:17

5/19 12:47 am - Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~Hellen Keller

5/19 7:30 am - Happy 4 week birthday, Rebekah! On Thursday, you will be one month old! Thank you, Lord, for allowing me time with your beautiful little creation.

In researching options for her apnea, I came across an OH Dept of Health doc that had this to say about T-18:
Lethal Malformations - trisomy 18, trisomy 13, anencephaly, or renal agenesis/potter’s syndrome, as listed under paragraph (V) of rule 3701-84-01 of the Ohio Administrative Code.
Trisomy 18 - a medical diagnosis involving trisomy of chromosome 18, which causes severe deformity and mental retardation and is characterized by prominent occiput, overlapping of index finger over third finger, frequent facial abnormalities, straight nose coming off sharply from the forehead, low-set ears, and cleft palate and lip.

We thank you, Lord, for our little Lethal Malformation!

Daddy Time!

Happy 4 Weeks!

Random Thoughts from May 13-18

2009-06-02T14:46:00.004-04:00

5/13/09 – DAY 23

5/13 6:52 am - Rebekah had a great Tuesday - day and night. Only a few minor episodes of apnea (as opposed to Monday which was one event after another). Michael even sacrificed his night to let me sleep. We're off to the pediatric cardiologist this morning. Thank you so much for your prayers...we do feel them working and God has brought Rebekah so far already.

5/13 2:16 pm - Well, the cardiologist has confirmed what we've known to be true - Rebekah's hole in the heart is not there and her heart looks great! There is a small abnormality associated with her aortic valve (Bicuspid valve that 30% of the population has), but nothing that should cause any issues. In fact, we do NOT need to go back to the pediatric cardiologist again unless sometime in the future we start to hear a murmur associated with the valve.

5/13 3:51 pm – Wise words from a very godly friend of mine: We thank God for His will and His providence. Sometimes it is healing....sometimes it is the cross...both are gifts from Him to us...out of love.

5/14/09 – DAY 24

5/14 3:10 am - My Mom leaves Sat after being here for 5 weeks, and I am very sad. She has been such a great help and hasn't complained once about taking care of my boys, folding laundry, cooking a meal here and there, doing the dishes, taking care of my plants, doing homework with the boys... What am I going to do without her? :-( I love you Mom! Thank you!!!

5/14 9:12 pm - Rebekah had her pediatric appt today. She weighs 4lb 15oz! She is gaining like a 'normal' baby. :-) We are going to up the caffeine citrate a little bit and see if that helps at all. In the mean time, the doctor will consult with some colleagues and see if we can come up with some other options for addressing her apnea / bradycardia / desats. There isn't much we can do right now other than pray that she continues to respond to stimulation when having her events. And they occur frequently during every day. But right now she's looking good, feeding well, growing well and getting a pudgy face! No more cute little porcelain doll looks.

5/15/09 – DAY 25

5/15 4:35 am - Someone told me about some SIDS-type device that either is a special mattress or connects to your mattress/crib and every so often it shifts slightly. I have googled and googled, and can't find anything remotely like this. Anyone ever hear of this? I'm thinking this would be great for infant apnea and a constant stimulation that might prevent attacks. This would be an awesome thing to invent for paranoid parents too!

Some friends responded back with devices that might help, but no mattress shifter. The Respisense looks pretty cool though - a diaper vibrator. :-)
- Respisense Movement Monitor
- Babysense V - Infant Movement Monitor
- Movement and Sound "Angel Care" Monitor

5/15 1:25 pm - What is up with opthalmic migraines? I wonder what causes them. Anyone else get these? All I can say is they are very strange. But better that than a full-blown, head-splitting migraine! (I have had 3 of these in the last few months, never had them before in my life. Think it might be stress?!)

5/15 8:24 pm - Michael - Our little princess has slept 3 hours without setting off her apnea alarms. It gives me hope that she could get past this too. PTL!! l

Rebekah with her doting father, Michael.

Rebekah holding Daddy's hand.

5/16/09 – DAY 26

5/16 5:11 am - It didn't last, but 3 hours was still a nice reprieve from the alarms. :-)

5/16 5:41 pm - Rebekah made a public debut today. We took the whole family to two birthday parties, one at Monkey Joes, another at a firehouse. Her monitor alarms were not too loud at either place which will make it easier for us to take her to 'loud' public places. But, unfortunately, she did set off the monitor quite a bit all day long. :-( On a positive note, I am pretty sure she tipped the scales today at 5 pounds even today!

5/17 8:00 am - We're off to church to see our wonderful brothers and sisters and Christ! This was Rebekah's first trip to church. We (Rebekah and I) spent the time in the Mother's Nursing Room so her monitor wouldn't send everyone out of the service like a fire alarm. The trip was stressful because she can't sit in the carseat without setting off the alarm. But the time at church went okay. Living with the monitor going off has just become a reality to our everyday life...

5/17 1:48 pm - I lost my keys at church today. :-( But when you're feeling a little blue, homemade chocolate chip cookies from a friend always helps brighten the day. Thank you to our many many food angels that have been helping us out. I so appreciate all of the meals!
(5/21 update - Guess what, Michael found my keys...right where he put them. ha ha. See what sleep deprivation does for you?)

My Mom with me, Josiah, Jeremiah, Rebekah, Elijah and Isaiah.

My mom giving Rebekah a kiss goodbye before leaving for the airport.

After my Mom left, we made our first family fun outing with Rebekah. The boys went to two birthday parties. The first one was at Monkey Joe's. Here they are all going down the slide together.

The second outing this day was to a birthday party at a fire station. Josiah was having a good time hamming it up for the camera.

At one point this afternoon, Michael called me and the boys to come outside. These strange looking turkey-like birds were in our driveway. The boys followed them across our neighbor's yard and tried to feed them. We later learned these are guinea fowl. Apparently they taste like chicken and eat spiders, ticks, fleas and other creepy crawlies.

5/17/09 – DAY 27

5/17 10:30 pm - Rebekah had a rough day today. She was totally wiped out and wouldn't wake up for feedings - which meant using the N/G tube and dealing with lots of A/B (apnea/bradycardia) events. I had a mini-breakdown over lack of sleep and Michael sent me upstairs for a blissful nap. Rebekah then 'woke up' late afternoon & has been fairly quiet since and 'behaved' for the Heatons as they babysat so we could go see Jeremiah sing in church choir.

Care for a medically fragile child - I don't have any official respite care - just a friend here or there that has some medical background and can feel comfortable enough watching a baby that constantly sets off her A/B monitor! ;-) Here in SC, Rebekah qualifies for Medicare Tefra (which will take 3 months to get), then we can apply for some MR/RD waiver (for SC) that will get us up to 60 hours of in home nursing care per week. Woo hoo! But that is ONLY if they consider her needy enough and it takes a long time after Tefra kicks in… so I am looking at probably next year for any care relief.
I hope I can last that long (and Michael).
For those in similar situations, how do you manage the sleepless and stressful nights?

Rebekah getting an N/G tube feeding.

Our church had a children's choir concert this night. Here is Jeremiah (on the left end in a blue shirt) singing for the concert. A friend from church (who used to be an EMT) came to our house and watched Rebekah so we could go see Jeremiah's choir perform.

5/18/09 – DAY 28

5/18 5:48 am - Rebekah had a much better night. She went back to the bottle too and is happy to have the N/G tube out of her nose. She did still set the monitor off, but it was all minor stuff (no blue spells). Oh, and I DID FINALLY get a new camera! We went with a Canon SX200IS. So far, we're loving it! Takes great pictures and has a lot of good features.

5/18 5:55 pm - Josiah had an emergency run to the doctor - he woke up from his nap with an ear infection. He then threw up in the car on the way home from the doctor to get his drugs. Lovely. Thank you to Leslie for coming over spur of the moment to watch Rebekah and the other boys!!!! I have no idea how I would've made it to the pediatrician before the office closed without immediate help!

5/18 11:46 pm - I now know why sleep deprivation is a major part in torture practices.

A favorite past time in our house is playing on the Wii. Jeremiah and Isaiah are taking turns playing Outdoor Adventure which comes with a mat. It's a pretty cool game and has many different challenges like log jumping, mine car racing, etc. It's good for a nice aerobic activity as evidenced by Jeremiah's sweaty head above.

Our pretty little girl... Also known as 'Peanut', 'Blue Belle' (for her infamous blue spells), "Beka"

Happy 3 Weeks, Rebekah!

2009-05-31T10:14:00.007-04:00

5/11/09 – DAY 21

5/11 11:30 am - The baby dedication was wonderful and we are so happy Rebekah got to go! Wanted to give an update on our baby but I have to say first that I am rather discouraged and running on an empty tank from sleep deprivation. The caffeine does not seem to be helping and I feel like she is having more severe spells that, short of a ventilator, are not going to stop. God has been so good to give us these 21 days with Rebekah.

------------------------
Rebekah continued to have 'spells' all day. I made sure each of the boys had some time with her.

Isaiah and Rebekah. Josiah couldn't wait to hold her too.

Jeremiah holding his sister. He played with her hands, looked into her eyes, and enjoyed loving on her. Josiah came and gave her some kisses too.

Elijah loves and adores his baby sister. Noticing a trend to the pictures? Josiah was just patiently waiting his turn to hold Rebekah.

Finally Josiah gets his turn.

5/11 6:10 pm - Isaiah 41:13 (NIV) - For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

5/12/09 – DAY 22 - HAPPY 3 WEEKS, REBEKAH!

5/12 7:42 am - Psalm 30:5(b) Weeping may last through the night, but joy comes with the morning. Happy 3 weeks, Rebekah!

I am sorry that I cannot write a thank you note to all of the people who have been caring for us and lifting us up in prayer. I sent this thank you email below to my church’s MOPS (Mothers of Preschoolers) group, but it is a thank you note that really applies to everyone who has reached out to us.

Dear MOPS sisters,

I was greeted this evening with Natalie Evans bearing gifts of diapers and formula for Rebekah. WOW! What a surprise! I don’t know if Natalie noticed, but I was tearing up and really touched by this gesture of pure love.

Rebekah truly is a testament to the power of God and answered prayers. I pray that each of you will be able to meet this very blessed child and see in person the handiwork of God. Being her mother is truly an honor and a privilege.

I thank Jesus for each of you daily. Thank you so much for all of your love, support and prayers. I cannot express how deeply I appreciate each and every one of you, and I am humbled each time I receive another reminder of how many people are caring for us during this journey we are on. Remember that each of you are fulfilling your own calling with each gesture of love and support that you show another. Gal 6:2 says ‘Carry each other's burdens, and in this way you will fulfill the law of Christ.’ You are all truly a testament to this!

In Christ’s love,

Susan Budd

Here are the diapers and formula we received for Rebekah.

Eph 5:1-2 "Be imitators of God, therefore, as dearly loved children and live a life of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. "

Acts 20:35 "In every way I've shown you that by laboring like this, it is necessary to help the weak and to keep in mind the words of the Lord Jesus, for he said 'It is more blessed to give than to receive'"

Matt 25:40 "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me"

Galatians 6:2 "Bear one another’s burdens, and so fulfill the law of Christ."

Prov. 17:17 "A true companion is loving all the time, and is a brother that is born for when there is distress."

Down the Road of Bittersweet

2009-05-30T18:08:00.000-04:00

Please go see the video on the Prenatal Partners for Life website, its worth the time to view it.

Down The Road Of Bittersweet
We had some good news and some bad news on a cold November morn
The test confirmed that we were parents, but there was something more
Our little boy had complications, and we were frightened as could be
But we decided to go walking down the road of bittersweet

The next nine months we grew together, somehow closer than before
And our faith began to blossom into something more
We would hold each other close and pray, then cry ourselves to sleep
We knew that God was walking with us down the road of bittersweet

Jesus, take my hand and walk beside me
And make my footsteps firm beneath my feet
I know You’ve gone this way before so guide me
I’m not alone as I go walking down the road of bittersweet

The room was filled with apprehension on the day that he was born
But when I took him in my arms I knew there was so much more
There was a bond of love between us, and I was never more complete
I never knew I’d find such blessing down the road of bittersweet

The doctor said we may not have much time before we’d have to part
So I treasure every moment deep within my heart
Soon we’ll have a little angel, praying for our family
I’m just glad I got to meet him down the road of bittersweet

Jesus, take my hand and walk beside me
And make my footsteps firm beneath my feet
I know You’ve gone this way before so guide me
I’m not alone as I go walking down the roadI’m not alone as I go walking down the road
I’m not alone as I go walking down the road of bittersweet

Words & Music by Karl Kohlhase© 2006 karl kohlhase

Written for Prenatal Partners For Life

STORY BEHIND THIS SONG...
I was asked to consider writing a song for Prenatal Partners For Life, a support ministry for expectant parents who have had the frightening news that their little one may not be healthy. After reading some of the moving stories on their site, I penned "Down The Road Of Bittersweet". I hope this song gives a little comfort and consolation to those whose hearts have been broken, as well as courage to those who feel intimidated by the prospect of carrying their pregrancy to full term after such devestating news.