Time for an update...

It's been a while since my last post, so I have a lot to update you all on. Today we are in the hospital for Olivia's seventh IVIg infusion. What seemed to be working so well before isn't doing as much as it was for her. Dr. Birmingham thinks she is flaring up, and at first I wasn't so sure, but now I am in total agreement with him. She is tiring out so much faster (I had thought is was due to her increased activity level before), her skin is showing more rash than before, and her fingers and feet have been causing her a lot of pain. Her stomach pain has been increasing over the past 2-3 months, and yesterday we saw Dr. Conrad, her GI specialist, and right now instead of scoping her (in the interest of keeping procedures to a minumum) he is going to have her get on some miralax for a while and see if regularity will help ease some of the pain. If in a month it isn't helping, he will take some pictures inside there... We go back to see Dr. Birmingham next week, and I am eager to see if he wants us to make any changes to help move things forward for her in a better direction. As far as emotions, Olivia has been a pretty tough cookie. Someone picked on here on the bus because of her elbows, and now a lunch lady is giving her a hard time over every little thing. I swear I could smack people. But she isn't letting it get her down too much, I am proud of her. Our social worker at Dr. Birmingham's office gave her a referral to the Make-A-Wish Foundation, so now we just have to wait and see if the dr. thinks she is eleigible for a wish or not. She has a list about a mile long of things she'd wish for, the top two are staying overnight in Cinderella's Castle in Disney, or a hot tub with a slide. So we will see what becomes of that. She currently cannot go outside in the sun between 10-4, so we are working on a lot of indoor activities, much to her dismay. Even the SPF 70 isn't enough for her right now. But we bought her some UPF clothing and coupled with the SPF 70 I think she will at least be able to go on her field trip. I let her play outside in the evening (still SPF'd up)and we got a canopy for the deck, I am hoping that all these things will allow her a little outside time, at least enough to make her happier. We are working on getting a 504 medical plan set up for school next year, hopefully that will help us with the amount of school she misses and hopefully it will help her in the event that she has a flare that limits her writing and other motor skills. Anyways, thanks for reading, and that you for all the prayers for our little sweetie.