It all began when I was only 18weeks pregnant. My AFB test that they do at 15weeks came back abnormal for a possible Neural tube defect. We were sent for a special HD ultrasound and while the Doctor was checking my babies spine he noticed that there was a cyst on my sons brain that was due to dandy walker. At the time they did an amnio to make sure that there were not other abnormalities. During this two week wait we were so overwhelmed. We have a 2 year old daughter that is fine so we had no idea why this was happening. We dealt with trying to make a decision about whether to keep our son our not. The prognosis for a dandy walker baby is so wide in variety that we had no idea what to expect and what made it worse is the doctors had no idea other. They couldn't answer any questions and were no help. All they could keep saying was we would see when he was born. This was the worst feeling ever. I couldn't understand why they couldn't answer any questions and why no one seemed to want to help. Then he was born on the morning of 03/18/09 at 730am. This was the best day of my life. At birth they did a CT scan, renal ultrasound, and c-spine x ray. All came back normal however it did indicate the baby had a full dandy-walker malformation. Tre is 3months old right now will be turning 4months on 07/18/09 and we will be having a MRI in September when he is 6 months. So far he has had 2 appointments with the neurologist and 3 appointments with the pediatricians. He has no problems right now. We also are involved with the Early Intervention Team in Charlotte. This is a great program. They come to the home once a month and they monitor his development. If he ever needs any type of therapy they will help arrange that also they help arrange applying for other benefits like child care, and medical. I would strongly urge anyone to contact them when you find out to get the ball rolling as a lot of these paper programs require a long process.
Attached is a beautiful picture of my son at 3 months.
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