Wow, a lot has happened since I last updated. I will start with Tori's news. The Ultrasound that was supposed to take 30 minutes, lasted an hour and 15 minutes. They had trouble finding stuff because her abdomen was full of gas and it was covering several parts they were trying to look at. We got it done, and everything turned out great. You would think that would leave us frustrated, to not have a reason for all of the excess gas, but Gene and I had an "Aha" moment. We started brain storming and came up with a theory, which seems to be working. Stay with me here...MAYBE she hurts so bad because she is producing excess gas because she is allergic to something. The gas is what is hurting because it is trapped in her body. Just a theory, but since we have cut out corn, she hasn't had another episode. We have been through so many tests...to find out we needed a $4.00 bottle of Beano and no corn! God has a great sense of humor at times!
More good news. Alex went to the Immuno last week. (I love Dr. Lee!!!!!!!) He was very impressed with how far he has come since starting SubQ. Two years ago he was short, chubby, and very unhealthy from all of the steroids he took to be able to tolerate his IVIG. In two years, he has grown a foot and only gained 7 lbs. He is all muscle now. Two years ago he was homebound and, for the most part, on bed rest. Yesterday, he ran the mile in 8 minutes, 5 seconds. We have come so far!
Anyway, he asked Dr. L. if we could try to start cycling off SubQ. I was afraid he would say no since Alex's last IgG was only 735. Dr L. asked alot of questions...was it late? had he been sick? had he gotten proper sleep? Well, yes, it was late. Yes, he had been sick, and no, he had not gotten good sleep. He felt the numbers were great all things considered. Here's the plan. We will do the next two weeks normally. After 2 weeks, he will get his blood drawn. Sed rate, Cbc, IgG and subclasses, Iron, and several others. After we get this, we will go every other week for 2 months and have the blood drawn again. If it still looks good, we will cut it back more. MAYBE he can be off this summer! If not, we will do it for another year or two, and try again once puberty slows down. We have HOPE that he may still outgrow this! The odds are not good, however, with God, ALL things are possible.
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