About Andy

Now that Andy is nine years old, it is what it is. He isn't learning, he isn't becoming self-sufficient. He is just remaining infant like. We've been depressed and sad about it for years, and mostly struggle with trying to be a family despite all of Andy's needs. We struggle with having time for each other and ourselves, so that we aren't completely lost in all of the care that Andy requires. If you'd like to read about his medical history, please see below.

Pregnancy, birth and family background:

Andy is my second baby and he was born May 2009 without complication, repeat cesarian-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 straw cup (he wouldn't take a bottle) until about 14 months old, then whole cow's milk by straw cup.  He does not self feed yet. He will occasionally put a cracker or long piece of finger food in his mouth if coaxed to do so. He puts toys and cloth objects in his mouth with no problem, and loves to chew on things. He just will not put food in his mouth.

Andy can only do an army crawl, and doesn't crawl on all fours or pull to stand at nine years old. He can't do any free standing yet either. He can bear weight on his legs though, which is great.  He can maintain a sitting position, if I place him on his butt on the floor. Andy can roll around easily to get to the toys he wants. He will also play on his tummy, while propped up on his elbows. He never crawls far, and stays in the room we place him in. He likes to play with infant light-up music toys, and toy pianos.

Testing:

Andy has had two EEGs.  At two years old, he had a One-hour EEG, then a 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-deletion. 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 used to patch his eyes , to try to strengthen them. However, the eye doctor says he is too old for this to help now. He wears glasses and keeps them on with no problems. They are for farsightedness and are supposed to help with his astigmatism. 

Diagnoses:

Global Developmental Delays

Severely Multiply Impaired (Speech, gross motor, fine motor, cognitive, no self-care)

Chromosomal deletion on 9q22.2

Myoneural Disorder (Paucity of white matter)

Microcephaly

Deformities of the foot

Infantile Autism

Agenesis of the Corpus Callosum

Incontinence of bowel and bladder

Hypotonia

Kyphosis

Astigmatism both eyes

Hyperopia both eyes

Exotropia mainly in one eye

Quadriparesis- generalized weakness in all extremities

Medications:

Stool softener only. We've tried meds for behaviors and they only constipated Andy more. His behaviors were worse, he cried more. He was spaced out. Trileptal, Risperdal, and others. Tried this for a year, and it's not for him, not for us. I'm not interested at all in cannabus oil. I would never use that for Andy. If any of these meds work for other families, that's great. We also try apple juice and coconut milk for his constipation, but he does not like these. I have to give him occasional glycerine suppositories, so that he can have a bigger successful bowel movement when he is having failed attempts. 

Equipment:

Gait trainer- he just sits in this, supposed to teach weight shifting

AFOs (ankle foot orthotics)

Eye patches- everyday for two hours (only done at ages 3-5)

Heavy duty stroller for preschool in lieu of a wheelchair

Ipad

Tumbleform stander bought from Craigslist in 2013

Current goals:

Right now our major goals are self-feeding/straw cup holding (he will not hold a cup) and helping Andy get into and out of positions on his own.  

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.