"Said The Angels to the Lord above, this special Child will need much Love"
Bill and I were married Sept. 8th 2001, just 3 days before Sept. 11th. I found out I was pregnant one year later. My whole pregnancy was very healthy, hardly any morning sickness. At 39 weeks gestation I was measuring too small so my doctor induced me. For some reason he was not gaining weight.
Our first son Carter was born June 10th, 2003 weighing 4lbs 14 ounces. It was then we learned things were not right. He had a small head and was missing rib and vertebrae, his thumb was only attached by a small piece of skin.
We were told they were 99.9% sure he had trisomy 13 and would not make it out of the hospital. One week later we learned CPR and brought him home.
When he was still alive 2 weeks later and his chromosome testing came back as normal they brought him in for an MRI and it was then we learned he had Semi-Lobar Holoprosencephaly. It was then we discovered the Carter Center's for Holoprosencepahly and we sent them Carter's MRI. Ironically we named him Carter.
All of the local doctors told us that Carter's outlook was not good. He would not really do much of anything, be a "vegetable". The best news we received was from a neurologist who said" I just don't really know what he will do". That at least gave us a little Hope. That Neurologist soon retired from his practice. There was a shortage of Pediatric Neurologist's in Grand Rapids, so we were told Carter could not be seen by one because he was not having seizures.
We took Carter home and we spent all day and night trying to feed him, we always fought with dehydration. Carter also had colic and would only sleep 30 min. at a time. There was one occasion he screamed for 36 hours strait.
When Carter was one he underwent two hand surgeries. On the left hand they removed his hypo plastic thumb and turned his pointer finger into a thumb. On the right the wrapped a tendon from his middle finger around his thumb to strengthen it. Today he has full use of both hands.
Because his neck was kinked to one side Carter was also treated for torticollis, a deformity of the neck where the head tilts towards one shoulder while the chin simultaneously rotates to the opposite shoulder. Treatment involved physical therapy where Carter would scream each time. At first the screaming was believed to be behavioral but his neck was not getting any better. Another MRI was performed and they discovered it wasn't torticollis at all. Instead they discovered a bone connecting his neck to his shoulder blade, and he was diagnosed with Sprengals Shoulder and Klippel-Feil syndrome.
We still were battling issues of feeding and sleeping, the nutritionist said Carter needed a feeding tube and the doctor said he did not. Thus he underwent numerous sleeping and swallow studies.
On Halloween when Carter was 2 we took him to ER for dehydration,they decided to admit him for observation. While in the hospital Carter had 3 Grand Mal (tonic clonic) seizures requiring so much medication that his body shut down. Overnight observation turned into one month hospitalization with complications of C-diff, a blood infection, increased fluid surrounding his brain requiring a hole to be drilled in his head.
After he was stabilized and recovered a feeding tube was inserted to help with hydration and nutrition. Because he had 3 seizures carter was finally referred to a neurologist who prescribed medication to help him sleep, we all slept for the first time in 2 years, not surprisingly Carter started thriving!
Carter has vision problems and goes by sound. Around 3 years of age we took him to another doctor in Detroit who diagnosed him with another syndrome, Optic Atrophy. We were told that he would slowly loose his vision. This lead us to the question of where did he get all these syndromes??
We have been told by many doctors Carter is just an act of God, a Mystery. This came out of the mouth of a rare syndrome specialist at UofM!
At 4 Carter had a neck surgery to remove the bone connecting his neck to his shoulder blade and it was a huge success!! He started thriving even more!
Carter on a daily basis goes to School when he is healthy. He absolutely LOVES it! He smiles his big smile when you tell him hes going. The last year he has been having a hard with with gagging periods and small seizures... not sure what is causing this? Wondering if his 5 year molars are really taking a toll on him. Other than bad spells and sickness, when he is healthy he is so happy and just a complete JOY to be around.
Carter has 2 little brothers and he likes swimming, rough housing, vacations!
Carter received a trip to Give Kids the World last winter from the Make-A-Wish organization. We were treated like complete royalty. I had never seen Carter so happy in his little life. That was the only week that winter I think he wasn't sick!
It is VERY hard to get the help you need in the state of Michigan. Everything I have gotten I only found through word of mouth by other parents, and now things are getting taken away. Very sad to me!
Carter is 6 years old now... he is way more than just a vegetable and touches the heart of everyone he meets. We are so Proud of this little Guy and he will continue to touch many hearts!!
"Soon they'll know the privilege given in caring for this gift from Heaven, Their special gift meek and mild... he is heavens special child"
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