Noah was born May 28, 1999 11 weeks early after a very difficult pregnancy. He beat the odds from day one. Noah weighed 2 lbs 9 ozs and was the smallest human being I had ever seen in my life. His bottom was so tiny, it was half the width of my palm. His diapers were hardly the size of a panty liner. In my eyes, he was beautiful and perfect in every single way.
He was on the vent for a week which seemed like such a long time because I did not get to hold him until he was extubated. Not getting to hold him for that long was not the hardest part, though. Leaving the hospital without my baby, wondering if he would be alive when I returned, was the hardest part.
Noah's hospital stay lasted a long 7 weeks. His stay was typical and pretty uncomplicated for a baby that early, BUT I always suspected something else was wrong. I would ask the therapists that taught him how to such from a bottle and the neonatologists over and over about cerebral palsy, only to be told that he showed no signs of neurological problems. Part of my suspicions stemmed from mother's intuition, the other part stemmed from my experience as a nurse and growing up with a cousin that has cerebral palsy. Noah cried almost constantly, except when I would hold him. His arms and legs seemed very tight and the slightest things would set him off crying. Lighting, noise, laying on his back... it was all too much for his little raw neurological system.
Time passed, Noah cried, my worries and suspicions grew, and at 9 months old I called my mom, told her we were taking Noah to the pediatrician and getting answers that day! The ped we were seeing at that time was one of those doctors that does not give you his full attention and always had one foot out of the door. I sat there, with a lump in my throat, pulling the doctor back into the room with my questions. He referred us to a physical therapist and within 2 weeks we had a definitive diagnosis of periventricular leukomalacia, aka PVL. (By the way, we have not seen that ped since. We are now with a wonderful ped that I would not trade for the world.) PVL is when the white matter and parts around the ventricles of the brain are damaged. The white matter is where the electrical transmissions occur in your brain and neurological system. The grey matter of your brain is your actual thinking part. Children with PVL are at risk of seizures, varying degrees of learning disabilities and mental disabilities, and developmental delays.
When Noah was first diagnosed, we had hope that he would walk. Oh my, getting him to be able to walk was very important. He received physical therapy, occupational therapy and speech therapy three times a week. I had to quit my job as a nurse so Noah could get the therapy he needed. Eventually though, through the years, I realized that walking really is not that important. My greatest wish was for Noah's wellbeing and for him to be as independant as possible. That has been my goal for the past 8 years. Last summer we found out about suit therapy that was being ofered for the first time where Noah attends therapy and this was also a first in our entire state. There were only 4 openings for children which were filled as soon as the spots were opened so it was completely out of the question for the summer of 2007. The cost of the therapy was $5000 which unlike his regular weekly therapy is not covered by insurance and we did not have the money for it anyways. The only two people that I had told and spoke to about wanting that therapy for Noah was Noah himself and my mom. We had all three wished he could receive it, but it was not meant to be.
A few weeks ago I received a call from Noah's Godmother, my aunt, about a story about a certain type of therapy she had seen on the local news. I knew what story and therapy she had seen and told her that I wished I could afford that therapy for Noah and he had actually wanted to do the therapy, but I hadn't told anyone because I never dreamed I could afford it and hated to ask anyone to help with a fundraiser. (Trust me, it is very difficult to accept help from others when you are used to being independant.) So, in our convcersation she said she would be happy to help me make the therapy happen for Noah. When we hung up, I put it out of my mind until about 2 weeks after that conversation and the phone rang and this happened...