Adventure Update 2 Appointments

On Tuesday (the 10^th) we went into Boston for a C.C.S. follow up and an appointment with a new orthopedic surgeon. It was a long trip for not a lot of information.

C.C.S went really well again. Amber weighed in at 11lbs 13oz and measured 24inches!!! This was nice weight gain that we weren’t expecting since we reduced the time she’s on her feeding pump and since she’s not taking her total required oral feeds. Don’t even get me started the length! It seems like a miracle. I think it’s been almost 5 months since she grew and never a whole inch at once! We went over all of Amber’s problem areas and since there was nothing new there wasn’t anything to discuss. They told us we still have referrals/requests in for the new specialists and test for the fall but no dates yet. They did have some test results though. Her vitamin D is up a little bit, this is great news! Her blood gas is getting better, meaning oxygen weaning is going to happen soon and will be easier! They also had our sleep study results. Apparently the only good thing they did was get the results in fast. The study showed (big surprise!) she still needs oxygen but, other than that they didn’t find anything. It concerns me a little bit because she really didn’t have a normal/usual night so I really hope they didn’t miss something. C.C.S. did call me today to tell me that they spoke to Amber’s pulmonary specialist who said that we could turn Amber down to 1/4^th liter of oxygen during the day but to keep her at the ½ at night.

Our other appointment was with a new orthopedic surgeon. They had communication issues so we didn’t really get great information from them. They did x-rays of Amber’s hips that showed both her leg bones are finally in the sockets right. The only other comment on her hips was that “they’re definitely funny shaped” but nothing about if it would be a problem, the two leg lengths or about the ossification issue. He wrote her a prescription for new hand splints and thankfully we can go back to the lady who did her first ones! He told us her back is fine (there were previous discussions of scoliosis) and her chest shaped is caused by deformed ribs (duh) and not a problem with how they’re attach to her spine. He looked at her chest, previous chest x-rays and pictures of it before she got the nice layer of chub and actually discussed fixing it! It would probably be with spacer type things so she needs to be bigger before she can have it done but on the other hand they don’t want to wait too long in case she gets sick or has more breathing problems. He’ll be able to tell us more once he’s talked to Amber’s pulmonary specialist and his colleague who deals with Jeune babies/lateral chest expansion surgeries (who we’ve actually seen off the records in a genetics appointment and love!).

She's such a goof! She loves to wear these glasses!