Andy is my second baby and he was born May 2009 without complication, repeat cezarian-section at 40 weeks. I had a great pregnancy. I started out underweight/thin and gained 53 pounds. I took prenatal vitamins every day, no drugs, no alcohol, no smoking. No family history of any type of disability and no family history of genetic disorder/syndromes.
Andy is able to eat by mouth. He has never had to be tube fed. He was breast fed for 9 months, then he drank formula in a bottle until about 14 months old, then whole cow's milk by sippy cup. He started drinking with a straw, and didn't like bottles any more. He does not self feed yet. He is starting to put large toys in his mouth at 33 months old. He is done teething, according to his dentist. His second molars are healing up now. We are hoping his toys to mouth habits will soon mean food to mouth.
Andy has had two EEGs. At two years old, he had a One-hour EEG, then 24 hour EEG (actually 36 hours) with normal results. The EEG ruled out any seizure activity, that may be interfering with Andy's development. He also had an MRI at 18 months old with "abnormal results", showing overall brain underdevelopment, partial agenesis of corpus callosum and possibly white matter underdevelopment/lack of sufficient white matter. Genetic testing for Fragile X, Angelman syndrome, Prader-Willi, and a comparative genomic hybridization microarray with normal results, tests came back negative. Also urine and metabollic testing with normal results. At 18 months old, his hearing test with electrodes on his head, called an auditory brainstem response test, came back normal. This way they could look at his brainwaves to see if the sounds were reaching his brain through the headphones on his ears, without him being able to talk to us. At the age of 5, Andy had a snip array done and this came back showing that he has a micro-deltion. It is on chromosome 9 in the q region 22.2, or 9q22.2. Two know genes were deleted in this area. The explanation is that this occurred at conception, the time the sperm and egg came together, and the DNA from me and my husband combined. When the two DNA strands combine to make one new strand, the small DNA piece was deleted. It contains two genes which were important for his development. It was a one in several million chance that this should happen to anyone.
For vision, he does have eyes that drift outward, called exotropia. He also has astigmatism in each eye, which means his corneas are misshapen. This may mean blurred vision, but we don't know for sure. We patch his eyes so that each eye can have a chance to strengthen up. His visual consultant feels that his two dimensional vision may be hindering his abilities. A second opinion vision doctor feels he should be wearing glasses to see things up close, and a third opinion doctor feels he should be wearing glasses in order to see far. We are confused on this one. He currently doesn't wear any glasses. Andy appears to be able to see just fine, and his initial eye doctor felt he doesn't need glasses at all.
Gait trainer- he just sits in this, supposed to teach weight shifting
AFOs (ankle foot orthotics)
Eye patches- everyday for two hours
Heavy duty stroller for preschool in lieu of a wheelchair
Tumbleform stander bought from Craigslist in 2013
Right now our major goals are self-feeding/sippy cup holding (he will not hold a cup) and helping Andy get into and out of positions on his own such as sitting or getting onto his hands and knees.
We are very concerned about his cognitive/thinking skills, and are anxious to see him blossom in this arena. While it is sad that he can do so little, we still celebrate who he is. He is a very joyful little guy.
This website: This website contains the opinions of Andrew's mother, Amy, I am the author of the site. This site also occasionally contains sponsored content for mentioning vendor products and services.