About Andy

















Pregnancy, birth and family background:
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 can only do an army crawl, and doesn't crawl on all fours or pull to stand at five 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 will now attempt to move around by putting his head down on the floor and use his elbows to drag himself forward. He will also lift up his but a little and try to get his knees under himself. This is still rare, but he explores this option a little bit more each day. When I coax him to drag forward, he gets excited and smiles, but won't do it on command. Only if he wants to.


Testing:
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.

Equipment:
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
Ipad
Tumbleform stander bought from Craigslist in 2013

Current goals:
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.


14 comments:

  1. I'm touched by your story. And I'm hoping for the best for your little guy and that he keeps making proggresses, a little step at the time.
    I, myself, am a singlemom from Sweden with a 21 months old daughter which is diagnosed with dysgenesis of the corpus callosum.

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  2. Thank you for this blog. My wife and I are expecting our second child in two weeks and she has been diagnosed with ACC. While researching, I discovered there's not alot of resources out there. We will be having extensive testing after the baby is born to find out if its complete acc or partial, I believe the docs are leaning to complete at this point. Kind of crazy because we have a 13 month old that was born absolutely healthy.

    Best Wishes-
    Jason

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  3. I came across this today and am shocked by the similarities between by son and Andy. My son was born with club foot and enlarged ventricles in the brain but it wasnt until he was four months old that we found out about his optical issues (myopia and nystagmus), his severe hypotonia, and a thin corpus callosum / white matter loss in his brain. He is 14 months now but does not pull himselft up, crawl, walk, or actively engage us. I feel like I am in a black hole. For the sake of my 2 year old daughter (who is fine) I know I need to snap out of it but I am confused and terrified at what the future will hold for my little boy. I'd love to touch base with you if possible to learn more from your insights. Thanks so much for sharing this blog, Jessica.

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  4. I stumbled upon your blog today and can very much relate to your experience as I have a soon to be 4 year old daughter (a twin) who has Cerebral Palsy as a result of a stroke at birth. She has hypotonia too. She isn't speaking yet, and isn't walking yet though has been making progress. It has been a long road for us too. Glad I found your blog, it is encouraging to connect with other families on similar journeys...

    Niki

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  5. Hi- I just found your blog through Top Mommy Blogs. I write a blog about my son who also has special needs. He is blind and has a hypoplastic corpus callosum and immature gyral pattern with microcephaly. We were first told he had no corpus callosum but a later reading of the MRI said he had one, it's just under developed. My son is walking and he is talking more now that he is in school. He goes to our local school for blind children and he is doing really well there. He stayed home with me for his first three years and just entered preschool.

    It's nice to read a blog where someone mentions one of the same diagnosis we have. Nice to read your story and thanks for sharing:)
    Jessica

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  6. You are very inspirational! I write as well about my daughter and her battle with epilepsy and developmental delays.

    I am wishing the best for you guys!

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  7. Just came across your blog and can relate to so much of it. My daughter is ten-months-old and she has severe developmental delays, seizures, and has a thin corpus callosum as well as underdeveloped white matter. I write a blog about her at wordpress called lydiaunicorn. I often feel like I am drowning in the sorrow of it all too. In reading your blog, I just want you to know how much I am cheering and hoping for you to have more good days than bad. It is brave of you to share. Thank you for doing it. Go Amy go!

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  8. Thank you for sharing your story. I recently started blogging about my sons developmental and severe speech delays. It has helped so much to find moms who feel like I do. This journey can be so lonely. Sending you hugs!

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  9. my name is may and my son has acc aswell .And for the first 3 years he had the same issues .he is now 6 and can run and walk very well .But he is still very delayed. He began to have seizures at age 4.I know what your going threw and know how hard it is .Stay strong .

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  10. My son is 18 months old and has never even smiled :( He has severe delays and severe epilepsy. The doctors/neurologists, have no idea what is wrong with him. I have yet to meet someone with a child that has similar delays. Your son resembles mine in a way. Do you have an update?

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  11. Andy still hasn't progressed much from up above. He is babbling more now, but still does not hold his cup or utensils. He still cannot stand independently, however, I make it a point to have him do an activity while standing at least once a day.

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  12. Thanks for sharing Andys story, my son Ashton is very similar and I can definitely relate. He also has a thin corpus callosum and other issues too

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  13. I have an Andy too. He is almost 10 with global delays. I loved reading your story. There are so many similarities. We found out his rare syndrome and delays were caused by a genetic mutation when he was 21 months old. I will be following your stories and look forward to seeing how he progresses.

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