Please don't share any of this on FB...we are trying to not let the whole world in on it until we get some more answers and have an idea of where we go from here.
Good news first -- I posted earlier about my job interview Wednesday. I'm super nervous as it's been awhile since I've had one!!
We did find out that Ry is immuno-compromised, although nobody seems to have answers why. He did have mono for 3-5 months so that definitely didn't help.
Just as we have gotten through the immune system issues, we have been slammed with something new.
The ed team and our PT (both through first steps), along with our orthopedic surgeon have been "digging" into why he is so extremely muscle-toned, both physically and orally. He still gags on a regular basis, often to the point of choking (but not bad enough he can't clear it on his own). He's not walking, and he won't stand unless he's holding onto something in front of him. To stand with us holding his hands, his little legs just crumble and he goes down. He has no lateral balance, tends to roll his ankles outward.
Our first PT walked in and immediately said he needed to wear SMO ankle braces for AT LEAST a year, along with wearing his tennis shoes every minute he's awake. We ended up requesting a new therapist because Ry did nothing but scream while she was here, she was very abrasive and did nothing but complain about First Steps while she was here.
We have been referred to a developmental specialist, who has requested Ryan's birth records, as well as the detailed report from the resp. team (he aspirated meconium, wasn't breathing properly when he was born, initial apgar was 4, hands and feet were so dark they were almost black and he was whisked away to the waiting emergency resp team and then the NICU before I was even able to touch him for the first time.
The ortho said immediately he didn't think Ryan needed braces and that he would like to work with the new PT on Ryan's treatment plan. I spoke with his PA on Friday and she told me that the concern is that Ryan's extremely low muscle tone is that he may not have gotten enough oxygen during birth!!!
WHAT!!???!??! Why am I just hearing of this at 17 months old? My little boy is the absolute happiest baby in the world, he's just not walking or talking. His receptive language is very good, he's just starting to point at things, but we are making strides.
Any experience with this? This is why I've not been around here much, but I would appreciate any insight. Our next steps are an MRI, CT scan and a swallow study. If he is in fact, aspirating food/liquid, that would explain the pneumonia and respiratory issues.