So after some discussion with friends, and some internet research, I spent some time at the Dr. office discussing concerns about Ammon and his growth and development last month at his 9 month check. End result:
He grew 3/4", gained 1 ounce and his head is now in the 75% since his 6 month visit. The doctor said she didn't think he had a hormone dificiency nor RSS, but wondered if he might have Mosaic Downes. There is no way to tell without a genetic screening, but it could also explain some of the delays we are seeing. OR it could just be that he is slowly getting up to speed.
Of course I had to go look up what Mosaic Downes Syndrome is. Mosaic Downes means that only some of the cells replicated with trisomy 21 chromosome and not ALL of the cells replicated that way. So I'm guessing that means Mosaic Downes only have some of the downe's symptoms and not all of them. I couldn't determine if that means he would be affected in some of his physical features only or if it would affect his learning ability too.
In infants it does mention something about his muscle tone, facial features, motor skills development, etc. A study done said that on average children with Mosaic Downes scored 10-30 points higher in IQ than regular Downes, but some Mosaics scored lower than some Downes, so that didn't really help. I really just wanted to know if he does have that what will that mean for him?
So I've been watching him and I can't really tell. He seems like any other baby, just a little behind on some of his milestones. But if he were like 7 months, he would be right on track, so? I guess time will tell. He can't even be tested for it until after 12 months. Either way, I love this little Mister to pieces.
So the good news is that my little one is eating better. He has started taking in about 4 baby jars a day and then still nursing and taking a bottle pretty regularly. I'm still getting up to feed him at night too. I think he is hitting a growth spurt, because he is always hungry.
Yesterday I was feeding him some mixed vegetables. He seems to take after the rest of my kids in this department. He tolerated a few bites and then made me wonder if he was really hungry since he kept blocking the spoon with his tongue or spitting out what I could get into his mouth.
I finally gave up after half a jar and tried some pears and other fruits. He gobbled down the whole thing with no problems and couldn't seem to get enough. He certainly knows what he likes and DOESN'T like.
His bottom two teeth made a debut this past week. Hurray! Baby boy has teeth! And he likes to chomp his mouth open and closed like he's eating something. Soo funny.
Although the boy isn't crawling yet, he has taken to his tummy and is quite adept at rolling over and spinning around in a circle. He isn't quite army crawling yet and he isn't pulling up and cruising at all, but he is making an attempt at being mobile. Something we kind of expected 2-3 months ago. Soo, he's getting there, just slowly.
If I can get through to ECI, I have a referral for him to get a screening and see if we can get some OT help to move him along. The doctor also wants to see him at 10 months for a follow up visit.
Maybe this is much ado about nothing like his NICU experience, but ? again - better safe then sorry, right?
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