Thursday, June 11, 2009
Today has been a little hectic. We had two showings for our house...to the same people. We're hoping maybe they'll be the ones. Somewhere in between all of that we were able to squeeze in a couple sessions of OT and vision therapy. Reagan has been a little fussy today but managed to do well during both therapies. Sleep is still exactly the same...no need to dwell on it (I've done enough of that already). Since Reagan's switch over to soy I've been a little concerned about her taking in less calories (since I stopped adding flavored syrups to her bottles). She just feels a little more bony lately (especially in her back). So I went ahead and ordered some benecalorie and I figured I would just add some in here and there to her food. I gave her some last night and some this morning...but this afternoon when I was on the phone with the nutritionist from the GI dept, she mentioned that she thought benecalorie had milk in it. Yep, it does (it's only the second ingredient). Great. So much for that. She said that instead we could just try adding a tsp of vegetable oil to her food (40 calories). Doesn't sound very appetizing, but it may be our only option (other than adding back all of those sugary syrups). One piece of good news I got today, I think we are going to be able to get Medicaid to cover the cost of her soy formula. Since it's Reagan's main source of nutrition, they will pay for it. They do not, however, cover anything that is considered supplemental nutrition. Interesting. You really do need to take a class on getting to know the ins and outs of these government assistance programs. No one explains any of it to you and I've found the only way you hear about many of these things is from other parents of special needs kids (who have already been through it). It's amazing how expensive it is raising a child with special needs. It all adds up and it adds up quick. It's a different life, certainly not the life I planned or the life I would chose. But I cannot imagine loving Reagan more and there is nothing we wouldn't do for her. She's our little princess and she's perfect in our eyes (although we would appreciate less seizures and more sleep).