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Posts by jennabean

Wow, that's fantastic!  Glad to see you're back... hope all is well :)   Would love to pick your brain about Conner's speech/palate issues... my Al (also 22q) is having some issues and you're one of the few people I 'know' to ask questions of!    Take care, Jenni
I would 2nd the idea of a genetic work up.  My son has 22q11.2 deletion and many of the things you describe sound similar to him...he'll be 3 in a few weeks. The delays you describe for your cousin-in-law's child should be sending up red-flags... we were looking for answers for Al before his 1st birthday.  I cannot believe they've just chalked his delays up to just normal differences in kids :(  A few people thought autism about my son as well, but I knew that wasn't...
I don't have any experience with Down's but my son has/had 22q11 deletion syndrome and was always a tiny, skinny little thing :)  We didn't know what was going on when he was just a nursling but I felt the same as you... it had worked just fine  (or rather THEY :)  ) for my daughter so I just kept up with the breastfeeding despite my more mainstream peds. concern.   My son was considered 'failure to thrive' and didn't care for solids (strong gag reflex) but when he...
My son Al was diagnosed this past late summer... overall I'd say its a relief to have the diagnosis, and truth be told I'd actually suspected 22q from all my internet 'research' but as of now, we're fairly certain that his was just a random occurrence.  That being said my husband I have not been tested, although we might decide to at some future point in time.   Best of luck with your testing in January... out of curiosity, do you have any other possible syndromes in...
Well, she seems like she's hypotonic to me but wherein that alone might explain much of what you've mentioned, I think I'd still, as the child's parent, want a workup done to look for other causes of the low tone.  Goodness though, how to go about mentioning your concerns to the parents... man, that's tricky.  I wish I had some advice on that score but I do think your instincts are correct.   I will say that I don't usually mention much of my child's differences to...
I couldn't read and not reply :(  It just sounds like you and your son have been through sooo much :(  Just a hug of support to both of you and I hope you all are able to get the school on board.  How absolutely frustrating, dealing with their completely ineffective teaching style for your son.  I hope someone with some competence from the school gets on your side and some real progress can be made.  Best of luck to you :)
My son has Pt and Speech, both with very skilled, seasoned therapists... and truthfully, I'm still not sure its b/c of their help that my son is improving... if it weren't for the fact that he should be getting therapy, I'd consider stopping it, kwim? We did take a break for the summer and it was lovely not to have to arrange our weeks around his appts. and just be. My son enjoy's his sessions though, so I feel overall its worthwhile but if I felt the way you, very...
oh I am so sorry for all that is happening to you right now I wish I had words of wisdom for you... hopefully someone else with experiences to share will chime in...
aw, we ALL have had those moments... I try to have a sense of humor about it but I know you're worried your dd may have hurt the other mom's feelings, etc. but truthfully, its just one of those things that kids do and teaching social grace is a tricky and delicate proposition. basically I've just tried to explain to my 6 yo dd that to comment on someone else's appearance in public is considered rude and teaching her how to be discreet is hard, but she's getting...
congrats and I do hope you get some answers soon!
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