Wednesday, February 23, 2011

We're Baaa-aaack! =0)

We're home (and so glad to be back, too)! I really like it in St. Pete, but the roads just are not marked well! =0)

The second appointment was, well, the usual. =0) Nothing really new to report apart from a new medication to replace the current one (which is causing a bit of an undesirable side effect that I won't go into). Nothing bad, just undesirable (not saying for Isaiah's sake). =0) He has already started the new med, and so far so good. He's not heavily medicated (definitely not a zombie) . . . in fact, he seems quite peppy . . . I hope he sleeps tonight! =0) If not, we can talk about that when we go back next month (new med = appointment in 4 weeks). It's a great time to go, though - it's Spring Break for us, so we can actually have a "vacation" of sorts.

It also looks like Dr. R is going to help us get some other therapies in place as well - OT, more PT, SLT . . . occupational therapy, physical therapy (his hamstrings are soooooo tight!), and speech language therapy. =0) This is a good thing - a very good thing. The sooner we get these things in place, the better the outcome for Isaiah.

For us, it has almost felt like we were on our own as far as providing all of these services - finding the providers, finding the finances, etc. I'm glad we have their support, even if they are in another county (3 hours away). I know that the insurance will cover these therapies (in theory), it's now just a matter of who will provide them and how. We are also in contact with CARD who will also be helping with all of this . . . and it's completely paid for with no expense to us.

We also signed up for a walk in Tampa! =0) We're going to be part of Team Rothman Center (long and awkward name, I know) in the Walk Now for Autism Speaks!!! The walk is Saturday, April 16th and will be in Tampa . . . yes, that means we'll more than likely be over there again. =0) It's okay, though . . . it's a Saturday.

Anyway, please support us in the walk (even if Isaiah is unable to attend because of the heat). If it's cool enough, Isaiah will be there with his stroller, frozen ice packs, and cooling vest. =0) If you look on the right side of our blog, you'll see two boxes - either box will take you to our personal Autism Speaks! page where you can make a donation to support us. I know I only set a goal of $150, but I'm sure we can reach that and go beyond! Please donate to help us solve the puzzle.

RDD (Rare Disease Day) is just a few days away now, too. If you don't want to donate to our walk (and you're in a donating mood), =0) you can donate to Masto Kids to help us find a cure for mastocytosis. Either way, your helping to fund research and awareness (more awareness means more funding for research). Both autism and mastocytosis have affected our family and finding the cure/effective treatments/answers are just as important to us.


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)