Wednesday, August 27, 2008


Hi everyone! I just wanted to give you a quick update on Isaiah. He is doing well, apart from an itchy goose-bump type rash that is all over his body. He's still having pain at night, and we are trying so hard to keep him in out of the heat - he loves to play outside with "the boys" (my nephews are collectively known as "the boys"). =0) About the only time he can go outside is in the late afternoon, when it cools down a bit. Even then, he has to be careful - he flushes so easily, and then he's in for a rough night.

I have to admit, last week and a part of this week were difficult for me. I am beginning to realize what this masto thing really means for Isaiah, my active, sports-loving little boy. From observation, I don't know if Isaiah will be able to participate in the sports he loves so much (unless God heals him - which I am all for and eagerly awaiting). His baseball, soccer, football, and gymnastics seem to tire him so easily (not to mention cause him pain, make him flush, make him break out in rashes . . . ). Swimming seems safe, so far . . . but he does have a fear of the water. =0) Who knows, maybe we have a Michael Phelps in the making? =0) Isaiah has been practicing in the bath tub! =0)

This was also complicated more by the fact that the doctor and nurses in the ER were so blah about Isaiah's reaction (they dragged their feet, and the doctor just didn't seem to think that my child not breathing well was "okay"). Don't get me wrong, they eventually did something for Isaiah, but I was definitely reminding them that my son needed help. It's true that I took him in before the reaction really started, but from the last experience, I thought that would be a good thing. I guess next time, I will wait for the ambulance to come through the windy streets of the neighborhood to pick up my son after he receives an Epi so that we can have hurried nurses and a more concerned doctor. I am beginning to see that "what do you really expect me to do, a miracle?" look a lot with Isaiah - I don't like it.

The previous just added to the rest of my frustration this week. I started seriously researching schools (public, public year-round, private, private year-round, and homeschooling), and it's just emotionally tiring and irritating. I was told by the public school (the one Isaiah would go to because of location) that he wouldn't be able to go there, but he had to go to another school . . . one that doesn't have the greatest reputation for FCAT scores (the huge state-wide assessment). The problem with that is that the FCAT says whether or not a student can advance to the next grade. I can't say that I 100% agree with that considering there are a lot of factors in a student's academic success.

I have an appointment with a private school, but this particular school doesn't have a full-time nurse on staff . . . not that it matters that much - in an emergency, the teachers are the ones who will need to be prepared and educated to administer Isaiah's Epis. It's just that I'm starting to think that it's the whole daycare situation all over again. Nobody wants the responsibility of taking care of a child who can anaphylax for no reason - as I have heard from the daycares, he's too much of an insurance risk. Back to the private school thing, I was thinking that this particular private school has several advantages (along with the perk that they do not administer the FCAT). It also sounds like Isaiah can get a full scholarship to attend.

The good thing is that Isaiah has laws on his side - he cannot be refused an education. But does that mean he has to settle for less? I am not willing to let that happen - my son will get the best educational opportunities, the ones available to every other child out there. If that means that I have to supplement with my own "school" at home, that is exactly what I'm going to do - by whatever means possible. It was always my hope to home school Isaiah for the first year or so, but I can definitely say that I will do my best to get Isaiah in somewhere - even if it means that I home school him until a school is forced to take him. =0)

Why am I even thinking about this when Isaiah is 3? Well, it's the whole IEP thing. Isaiah is already showing some signs of mild developmental issues (mostly the mild speech issues, but there are a few other things), and he obviously has the health stuff . . . unless God heals him before he starts school, Isaiah will need an IEP. From what I've heard, we need to prepare now so that the school will be ready for him. Staff will need to be trained and informed on this thing called systemic mastocytosis and what that means for my child. I've been called over protective and even paranoid . . . but one thing I will be is proactive in giving my child every opportunity available to other children - and I will not isolate my child in a bubble (which has been suggested to me - and I find that offensive in so many ways . . . ).

Maybe I'm just grumpy and venting, but I figured I would share a smidge of what's going on in my life (and Isaiah's life - it is about him, after all) with you. So, if I have sounded a little down the past week and a half, this post should explain it all . . . well, at least most of it. =0) My faith in my awesome, wonderful God has not wavered a bit. I know that He can take care of all of this - I'm just still learning how to put it all in His hands. I know that He has the ability to heal Isaiah and I am totally thankful for the healings I have already seen take place (like Isaiah's vocabulary and ability to speak as well as he is). I know God can do more, and I have no doubt that He will. I am also grateful that God allows us to vent and He knows and understands the frustration we feel - I am glad it's a partnership and not an individual (read as lonely) struggle, He's always right beside us.

Anyway, I think this is supposed to be a wordless Wednesday . . . =0) Here are some photos from this past week:


1 comment:

Kelly-Ann said...

Hey Kelly!
I see everything is going well. I do have a question. Why won't they let Isaiah attend the school he is supposed to? As far as the FCAT goes it is ridiculous but nothing to worry about. It really is a culmination of things they learn throughout school. Some schools put way too much emphasis on it. I have had a student in which I had to learn to use the EPI pen. Allergic to everything... obviously not quite as bad as Isaiah. Teachers do get worried but I find it helps when the parents really explain and give as much information of the allergy or problem. The more information the better. It is good to start your IEP process now since it takes forever once they beigin in school. Good luck in your search.. but definitely enjoy the preschool years! Oh I saw one of the pics of Isaiah with the computer... here is a site he might enjoy...