Lots of neat thing for both kids today! This was the first "proactive" ped appointment we've had for Emma... the past several since coming home have been more survival based. It is a MUCH WELCOME CHANGE!!!
First, let me tell about Micah though :) He has officially DOUBLED his weight and put on about 1.25" in lengh! He's now 22lbs 4 oz and 28" long. He came home in 3-6 months clothes and almost 6 months later he's in 18 and 24 months clothes! What a HEALTHY looking kid we have now, I'm so happy for his accomplishments! Also, I asked about what to do about Micah being on soy and if we could take him off of the formula. That was met with a big happy YES and we are going to go ahead and try to do regular milk with him. We'll do it for a week, see what kind of response we have as far as BM's and reflux, and we'll go from there (unless, of course, it's obvious in less time that he cannot handle it). It's possible that now that his system is "stable" he will do just fine with dairy. We shall see!! If need be we'll move to soy milk, which is what our ped has recommended as an alternate to the regular milk. We did get a new script for Micah's Zantac script for his tummy. He's good to go!
Emma is slowly but surely putting on weight. She is 21lbs 12 oz now and is 33" long! She was 17lbs and 31" when she came home almost 6 months ago. We're going to meet with a nutritionist... sometime... and get some advice on how to best adapt her diet to get in about 150% of the current calories she wants to take in. We also got a script as our first step to getting a wheelchair for Emma. If anyone has any ideas or advice on going through the process to get her some wheels or even what a good wheelchair might be for her, I'll make a list below of what we know her current needs are. I also got our homebound paperwork signed, and the ped agreed she needs homebound services at least until December, and maybe through flu season as well. If she was to catch a cold even right now it could put her at risk simply due to weight loss, but something more serious could cause a more dramatic decline. We'll all be getting flu shots this year and the ped suggested Synagis for Emma, but we're pretty sure insurance won't cover it because she's over 2 yrs old. Synagis is a vaccine to prevent RSV, one of the the primary causes of death in premature and high risk infants, and also a leading cause of hospitalization for children under 2 yrs old. We have Emma's IEP next Tuesday, and I don't know how soon after we'll get her started, but at least we're getting that ball rolling! The school is aware she'll be needing homebound and said they're prepared to set that up for her. More on the IEP and questions there later :)
I love leaving the doctor's office with the feeling of "yay, let's get going and doing and moving" and not "let's preserve things until next time." And... I like going when no one's sick and we're just dealing with all the great things the kids are learning and doing and not sickness or other health concerns. If only they were all that way!!
Ok, here's what we need in the way of support for Emma, or at least this is what I understand her needs to be:
5-pt or harness belt for upper body control
tilt in space or recline option with option for 85-90 degree seating
folding or collapsible without too much of a process
not sure about the need for one equipped with tie-downs yet