Wednesday, May 27, 2009

Just so you know . . .

I haven't fallen off the face of the planet. =0) I have been soooo busy recently that I barely have time to do much of anything.

The biggest reason is that I am making a cooling vest for Isaiah. Since I am afraid of electric sewing machines (it's the whole breaking and flying needle thing . . . and maybe also the distraction and sewing a finger to a project thing) =0), I am hand-sewing the vest. I guess I should explain the cooling vest idea. A cooling vest is usually used for people with cystic fibrosis, but some of the other masto moms were discussing how it could be beneficial with our masto kiddos. This vest has pockets for cold/ice packs to keep the patient cool (or a tubing system for ice water . . . but you need a cooler and the pump . . . there is also one that you soak with water). Since I don't like to walk around in wet clothes, the last one was out - I couldn't make Isaiah wear something I wouldn't want to wear. So, I began looking for this vest and found out that they are soooooooooo expensive. Since I can't see spending so much for something that Isaiah will quickly outgrow, I decided it would be much cheaper to make one . . . and now I am poking myself with pins and needles while making this vest. =0) Yeah, my fingers hurt. But it's worth it . . . I hope. =0) There really is no guarantee that it will help, but at this point, I would love Isaiah to be able to go outside for more than a minute without flushing and leg pain the rest of the day. I would love to see him rash-less, or at least as close to rashless as we can get at this point.

Isaiah has been flushing quite a bit recently. He even flushes going from our front door to the car - maybe 10 feet? Flushing leads to leg pain which leads to irritability and sleeplessness. I feel so bad for him . . . and tylenol just doesn't cut it. I have been trying different things (as suggested by the other masto moms), but it just seems like he's just overly sensitive right now. The red dots appear on a daily basis now and he is getting the rashes again. All of this combined leads to sleepless nights for him and for me. Even though Isaiah handles it well (he acts like he slept all night), my brain just doesn't work. Sometimes I feel like I have to remind my legs to walk. =0) It's hard to function on little sleep when you have to tutor and do your own homework . . . the late nights are really starting to get to me. Then there is Isaiah . . . Isaiah is irritable. He can be the sweetest little guy one minute and be so grumpy the next. He still manages to smile, though. I love that smile and giggle.

I'll post some pics of the vest when I get it finished - it has to be done this weekend because VBS starts next week. That's another story . . . I am so thankful that there are people at church who are going out of their way to make this VBS a wonderful experience for Isaiah (I have to say that I was feeling quite apprehensive about it at first, but I am feeling quite at peace now). It's hard to include Isaiah in group events beacuse of everything that he's allergic to (he's bound to come into contact with something that could cause another anaphylaxis episode or at least an allergic reaction of some kind), but they are doing so much to include him in the activities (thanks, Annie for thinking of things I didn't even think about). =0) Thank you guys sooo much! I know it's a lot of hard work, but I can't tell you how much this means to me . . . and it will mean a lot to Isaiah as well!!!

Well, that's all I have for now . . . I think. =0) Blessings!

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