Okay, so today I found out (by a postcard I got in the mail) that Isaiah's appointment with All Children's was changed to October! I have mixed emotions about this, seeing as the allergist is just as overwhelmed as Isaiah's PCPs are. This isn't some normal occurrence disease for regular doctors, and most of them don't know too much about the disease. It looks like the pediatricians have finally discussed Isaiah and the whole masto thing, so when we see them they know the scoop on Isaiah. The allergist treats a patient who has masto, but she doesn't treat the masto (and the patient is an adult with mast cell leukemia - a totally different scenario). She does know a little about the disease, but like I said, it's so confusing because so little is known about it.
I informed the poor scheduling nurse at AC of all that was going on with Isaiah and she said she would talk to the doctor, but the best they could do is put us on a waiting list for a cancellation . . . the place is at least 3 hours or so away, so it would have to be a cancellation at least a day in advance so that we could actually have time to get there. I'm not angry with the doctor, she has every right to take a couple of weeks off, and it seems like the other doctor we are getting is a qualified physician, it's just that the appointment is October 10th!!! I was already preparing for (and looking forward to) the appointment on September 4th (which was scheduled over 2 months ago). Grrr. =0) Oh well, I guess we can wait another month.
The bright side is that Isaiah's system will be clear from all the steroids he was given in the ER. This will allow for more accurate test results - which will give us clearer answers (when we went to Johns Hopkins, Isaiah had been on steroids for a reaction). Of course, I really have no idea what AC will want to do with Isaiah, which is part of the frustration of not going in 2 weeks. I guess we still waited longer for an appointment at Johns Hopkins, so I guess we can wait for this one. . . . =0)
I know, it seems trivial to gripe about. I guess I was still thinking that they would tell me (in 2 weeks) that there is one medication that will work in place of the 10 Isaiah is on, and that Isaiah's masto would be better controlled by it. I know, wishful thinking, but one can still hope, right? =0)
Isaiah is doing better - he's still a little pale though (and oddly enough it really shows through his lips). He's also still grumpy, but that could also be coming from the weather (yes, Fay is still here, but it finally is going away). He's lounging a bit more today (he was more active yesterday), but his appetite seems to be better.
I actually have a funny story about his appetite and cooking . . . Yesterday we lost our electricity. Not really because of Fay (though, all of the houses across the street from us are without power because of Fay), but because FPL wanted to trim some trees, so they turned off our power to do so . . . in the middle of Fay! Okay, so more toward the end. =0) Anyway, since we had no electricity (and cooking for Isaiah is tough enough as it is), I had to cook Isaiah's special hot dogs by candle light - literally! It was actually a lot of fun! I wrapped the hot dog in tin foil and moved it length-wise across the candle's flame, making sure I rotated it a few times - gotta make sure it's cooked on both sides! =0) It took forever for the thing to be thoroughly warmed, but Isaiah seemed to like it). By the way, the candle was fragrance-free and not made with soy. =0) To make the situation a little more funny, Isaiah wanted seconds! =0)
We did get a chance to go out yesterday to take a look around. Here are some of the pictures of what we saw:
The bright side is that Isaiah's system will be clear from all the steroids he was given in the ER. This will allow for more accurate test results - which will give us clearer answers (when we went to Johns Hopkins, Isaiah had been on steroids for a reaction). Of course, I really have no idea what AC will want to do with Isaiah, which is part of the frustration of not going in 2 weeks. I guess we still waited longer for an appointment at Johns Hopkins, so I guess we can wait for this one. . . . =0)
I know, it seems trivial to gripe about. I guess I was still thinking that they would tell me (in 2 weeks) that there is one medication that will work in place of the 10 Isaiah is on, and that Isaiah's masto would be better controlled by it. I know, wishful thinking, but one can still hope, right? =0)
Isaiah is doing better - he's still a little pale though (and oddly enough it really shows through his lips). He's also still grumpy, but that could also be coming from the weather (yes, Fay is still here, but it finally is going away). He's lounging a bit more today (he was more active yesterday), but his appetite seems to be better.
I actually have a funny story about his appetite and cooking . . . Yesterday we lost our electricity. Not really because of Fay (though, all of the houses across the street from us are without power because of Fay), but because FPL wanted to trim some trees, so they turned off our power to do so . . . in the middle of Fay! Okay, so more toward the end. =0) Anyway, since we had no electricity (and cooking for Isaiah is tough enough as it is), I had to cook Isaiah's special hot dogs by candle light - literally! It was actually a lot of fun! I wrapped the hot dog in tin foil and moved it length-wise across the candle's flame, making sure I rotated it a few times - gotta make sure it's cooked on both sides! =0) It took forever for the thing to be thoroughly warmed, but Isaiah seemed to like it). By the way, the candle was fragrance-free and not made with soy. =0) To make the situation a little more funny, Isaiah wanted seconds! =0)
We did get a chance to go out yesterday to take a look around. Here are some of the pictures of what we saw:
It's really not as bad as it could have been, and we haven't had the flooding that places just south of us have had. Still, it was a lot of rain - I think we got about 20 inches, though I'm not sure.
I will post some more pictures of Mr. Curls (aka, Hurricane Isaiah) a little later. =0)
Posts
No comments:
Post a Comment