Tuesday, the 4th, we drove down to Gainesville to see Beans' immunologist. For those that don't know, we found out he has a primary immune deficiency a little over a year ago. This appointment was mostly good news. His IgG levels, though low, are not low enough to require them to be replaced. He did build antibodies to the booster shots he had, they tested them again to see if he can hold onto them but don't have those results yet. They also did bloodwork to test all his Ig levels (IgG, IgA, IgM, etc) and to test his T-cell functionality. We know he has enough T-cells but we don't know if they function well enough. The T-cells are what help fight off viruses and he has a really big issue with them so we'll see what the testing shows.
There were two downers to the immunology appointment. First, Beans lost an entire pound since seeing the GI in June. It took him from January to June to gain that pound. He's been eating a lot more by mouth and getting his tube feeds and still managed to lose it. My theory is that his formula is so broken down his body can absorb it better and regular food tends to irritate his system making it hard for him to absorb even his formula. Who knows if that's it but every time we've seen a great increase in oral foods (and no, he won't even think of drinking his formula and I don't blame him - it's NASTY) we see the weight loss.
Second downer of the day, immunology is very concerned about how sensitive his eyes are to the light so he got a referral to opthalmology. I have no idea what this could be so I'm just not going to worry about it unless proven otherwise. :P
Beans was absolutely fantastic for his blood draw and the nurse who did it was great. Not a tear was shed and the whole thing was finished in probably 30 seconds. Quite a difference from his local blood draw experiences.
Wednesday (Little Man) and Thursday (Beans) the boys had their first individual appointments with their new play therapist. Their new therapist is male and Little Man already is accepting him. They each have their own issues to work on but mainly social skills, anger management and general behavior are the goals.
Wednesday Little Man also got his new glasses. He is so excited and says all the girls are going to be embarrassed because he's so handsome! I said embarrassed? Don't you mean excited or jealous? Nope, he insisted they'd be embarrassed. Either way he knows he's a handsome fellow.
That leads us to today, the day of Beans' Plan of Care meeting for school. The Plan of Care is basically the medical addendum to his IEP, or basically, how they're going to feed him and what accomodations they're going to make for his health issues at school.
I was a little apprehensive about this meeting. Not knowing who his new teacher was going to be or what to expect, knowing he won't have his own 1 on 1 aide this year, worried that they wouldn't take things seriously.
There was nothing to worry about. The school, administration, teachers, nurse, and special area teachers all bend over backwards for our Beans. The meeting was about an hour and a half long and we bounced around different ideas that would work for his schedule, keeping him out of the heat, keeping him as healthy as possible, all that good stuff. In the end we changed his plan of 100% inclusion to about 50%. His "home base" will be the inclusion class and he'll spend the beginning, end and chunks in the middle in with the "typical" kids but while his class is at PE he will go to music and art each a second time. When they're out to recess or lunch he'll be in the self-contained class and he'll receive his feeds in the self-contained room as well. It's going to take a lot of attention on the part of everyone as there will be a lot of bouncing between the classrooms but I really think this is going to be the best solution.
Because of the change of placement, we'll have another IEP meeting next week just to pretty much sign the changes into effect. I am so incredibly thankful for this team that is willing to do whatever it takes to get Beans what he needs to learn and be safe.
Another busy week is coming up, with appointments almost everyday, both boys have their school open houses on Tuesday and school starts for them Thursday. Again I am just amazed that things just seem to fall into place. We are so incredibly fortunate.
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