Tuesday, February 22, 2011

First of Two Appointments

We're back in St. Pete at All Children's Hospital. Isaiah had his first appointment today at the AIR Clinic (we finally scheduled his appointments over here next to each other so we could accomplish the appointments in one visit). Tomorrow, Isaiah has his appointment with the neuropsychology clinic.

Really, there is nothing new to report. We may have to have his IgE/RAST testing redone, considering they were not back yet (they should have been since they were done in December). So, more than likely, we will have to have them repeated. The RAST testing just gives us an idea of how sensitive Isaiah's body is to allergens - mostly food allergens, but there are a few environmental allergens listed as well. Last year's test didn't reveal much of a change - Isaiah's total IgE was well over 2,000 then . . . it should be much less than that . . . less than 60 would be nice. The higher the number, the more sensitive he is. He also had more allergens that were above the scale - the highest they can measure is 100 . . . Isaiah's counts for milk, wheat, soy, peanuts, and eggs were well over 100. As far as environmental allergens, cats and dogs were around 90/98.

Another count we'll be watching for is his eosinophil count. Two years ago, it was at a 9. Last year, it was 11. Again, the higher the number, the more reactive Isaiah's body will be. He already has eosinophilia and he is not too far from having hypereosinophilia. Basically, that just means that without God and the meds, Isaiah would have organ damage. With hypereosinophilia, it won't matter if Isaiah is on medications or not, his body will attack his organs. We're praying this count stays down because that is just a scary road to travel down.

As usual, we got the talk of medications and their long-term side effects. I was expecting that, but it's always just as frustrating to hear. Yes, the meds can have long-term side effects and some of the meds haven't really evaluated long enough to know the full extent of their side effects, but . . . it's better than being off the meds at this point.

What I am sure of is that God is in control. Whatever the outcome, whatever the future brings for Isaiah and our family, God is in control and will use the situation to bring glory to His name - and to that I say, "amen!" If it were up to me, I would want Isaiah miraculously healed right now - and that would be awesome! That can still happen. Right now, that isn't the case (at this point in time). God is doing what He sees fit, and that is walking us through this. Scary? Ummm, YES! Comfortable? Absolutely not. Do I find peace? Yes. His knowing where we're headed is better than my knowing where we're going. =0) My comfort is found in knowing He can handle this . . . He is the creator of the universe, after all.

Tomorrow is another appointment . . . but we usually don't get too much new info. at these appointments. =0) Sometimes, I wonder, "what's the point in driving 3 hours to hear about nothing?" Well, I guess there is a point and I'm sure if I had any new concerns or questions about my son and autism I'd be more than grateful for the appointment. =0) I'm grateful for the appointment, by the way . . . just being silly. =0)

I will post, again, tomorrow . . . especially if we get to do anything exciting . . . like the Pier. =0)

By the way, Rare Disease Day is coming up - Monday, February 28th!!!! Wear your spots in support and to help raise awareness for Mastocytosis!!! =0)

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