Written & Contributed by Adam Trawick
Mathew was born via emergency c-section at 37 weeks. Charlie's, Mathew's Mom (pictured), blood pressure was dangerously high, and they were afraid she was going to have a stroke. But we only ended up being in the hospital for a couple days before we were released to go home.
After a couple weeks we noticed he didn't seem to be holding his head side to side much at all but was able to lift his head up while on his stomach almost immediately. So we took him to his pediatrician and were told "he's just a baby" and it wasn't a big deal. Then he started throwing up daily, and they kept changing his formula.
The doctor said he had acid reflex and gas. He was in pain often and his muscles were very stiff. He would hold his arms down and slightly bent at the elbows like he was a body builder flexing. Again we went to the pediatrician and Charli was told that she was an over-reactive first time mother and that Mathew was never going to be a perfect baby.
We finally saw a local pediatrician that looked at him and told us that he thought Mathew had cerebral palsy. This was just before Christmas, and he got us into the top pediatric neurologist in the area before the end of the month. Mathew went through extensive tests, they first said he had Krabbe's disease, which is a white matter disease where the white matter of the brain slowly takes over all of the gray matter in the brain and the child doesn't live past two years old. Then two weeks later we got a phone call saying the test came back and he in fact did not have Krabbe's disease.
They thought he had stiff baby syndrome and prescribed him muscle relaxers, which helped some. He started going to physical therapy and the therapist told us that she didn't think he had stiff baby syndrome because they usually see more progress with therapy than Mathew was experiencing.
Mathew went through three spinal taps, several EEG's, a 24 hour EEG, sleep study, muscle biopsy, you name it. Finally, they diagnosed Mathew with cerebral palsy. He started medication for that and more therapy. In the first two years of his life we were admitted into St. Louis Children's Hospital 20+ times. Each time was for at least a week. If he got sick his oxygen stats plummeted. When he was two Mathew had surgery to remove his tonsils and adenoids, which fixed his breathing issues while he was sick.
He then began having seizures. He has what are known as cluster seizures, where he has a series of several short seizures, lasting usually only 10-30 seconds. One day he began having seizures and we rushed him to Children's Hospital. He had 30 or more on the drive there, then once he was admitted he had his longest one, lasting around 5 minutes. He was diagnosed with epilepsy and is on anti-seizure medication.
Then he had a couple good years where he was not hospitalized for anything major, and he was making progress with therapy. He does not walk or talk, so he's in physical, speech, and occupational therapies. An x-ray showed that Mathew's hips were partially out of socket. So they attempted to fix this with therapy for a couple years, and it only got worse.
Last October Mathew had surgery to cut both of his femurs and rotate them into the hip socket correctly. They then used plates and screws to hold the bones in place so they could fuse them back together. In addition, the two tendons in his groin were lengthened. This surgery was to help him be able to put his legs down flat, since he would scissor his legs when walking. Both of his legs were in a cast and there was an a-frame style bar that connected them so he could not move his hips out of socket during his initial healing process.
After six weeks the casts were removed, but the hardware was quite painful for him and he couldn't sit or lay in certain positions. In February the bones had healed, and he had surgery to remove the hardware. He is doing much better, but he had regressed quite a bit since he was out of therapy for the entire healing process after his surgery. He's in a regular wheelchair at the moment, but his therapists want to transition him into a powered wheelchair to give him more freedom and the ability to interact with other kids while at home, school, and therapy.
The issue becomes that our van will not accommodate a powered wheelchair. With us having an older van, it doesn't make much sense for us to pay the $20,000 plus to have the floor lowered and a ramp installed. We're trying to raise money to offset the cost of buying a two or three year old used van that is already modified.
Any help is greatly appreciated!
More than 50% of the proceeds from all FTF purchases made between September 16th, 2016 and September 30th, 2016 will benefit Mathew and his family.
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