The waiting game kills me

My son was diagnosed with ACC in utero at 20 weeks. We conducted various tests to ensure that this was isolated. He is now 13 mos. Thank God he is quite active and thriving nicely with the exception of not wanting to wear his “walking” shoes. One major concern that has me as a mother, very concerned, depressed, sad, etc. is that he seems to have a major adversion to texture and is not really interested in eating solid foods. Has anyone else experienced this? Also, his speech has been diagnosed as delayed which can be attributed to several ear infections and tube surgery. But I have this underlying fear that it is attributed to the ACC. ANy thoughts?

Hello, my daughter has C-ACC and has alot of trouble swallowing aswell, she is 15months old and can only tolerate stage 2 baby food, we are in the process of running test, her throat is smaller than what it should be and were waiting to get her into speech thearpy…you just have to talk to your doctors and get test, its a hard process, every few months it seems like theres somthing new with her but we just got to keep pushing and striving for her.

Hello, my son has hypoplasia of cc- he also had trouble swallowing and tubes due to frequent ear infections. He is now 20 months old and after he has started speech therapy he is doing much better about eating. He has hypotonia (full body) which is why he had swallowing trouble. He can eat things like grilled cheese sandwiches, toast, crackers…that is so much more than he could before he started speech therapy. He doesn’t talk yet but I just pray that someday he will. He babbles still and says dada or byebye but not in association with either. It is a very hard to watch your child struggle with simple things like swallowing… it amazes me what we take for granted in life. He has taught me a lot. He has apnea and seizures as well these are associated with the brain abnormality but the seizures are controlled well with his medication. He has been on it since he was 9 months old; apnea monitor since 10 months; and has worn glasses due to near-sightedness since he was 11 months old. I know it gets hard and the days seem tough, but just keep your head up… and remember you were chosen to be his/her Mommy and you should feel so wonderful about that, also all the fear that you have about what he/she might not do will be so rewarded when he/she does. I know how you feel, just hang in there.

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It is amazing what we take for granted…I hate to see these hard things for my daughter…but i pray one day she will be ok. Does your children sit up or roll over yet? may daughter doesn’t babbel, or sit or roll, its very hard were working with her but nothing yet…

Tanna, is your daughter in early intervention? What types of therapy is she in? My son wasn’t able to even old himself up on his tummy, roll, and could barely sit (if we placed him in that position) at a year old. It wasn’t until he started physical therapy that he really improved. Does she have hypotonia or siezures? My son’s siezure medicine made a huge difference in him also. He has been with Birth to Three since he was 6 weeks old, and they do an amazing job with him. Just keep working and praying, and if she isn’t in pt it is amazing what a difference that would make. My son is in Physical Therapy, Speech, Developemental, sees a Nutritionist, and we are getting ready to start vision therapy. The more therapy you get the better.

My daughter is in pt, ot and vision thearpy. she also is going to start speech, we were evaulated by a nutrionist but they said she’s good.I started her in ECI when she was 6months and we just added a rehad to do the others…she still isn’t sitting or rolling, but i do notice a small difference. they say her being blind is harder, cuz she has nothing to look up for or sit up, and when we do exercise her she just yells and yells, my poor baby… but i am a strong beliver and i know one day she’ll be ok…