Friday, August 1, 2008


I know that one of the phrases of pediatric mastocytosis is "spots happen," but boy do I hate those spots (I love my child, and hate the spots)! Those spots bring discomfort to my baby: itching, pain . . . I wish there was a way to keep them from happening to him.

If you haven't guessed yet, Isaiah had some issues with spots and rashes again. His legs, feet, and arms look like . . . I'm not even sure of what they look like, but it's horrible! It's not as bad as it was in March, but it's still not the way Isaiah's skin is supposed to be. To give you an idea of the rash in May . . . (I was thinking I wouldn't post these, but it's just to give you an idea):
By the way, some of these are a little gross . . . . =0}

The rash that is on his back in the photo above was all over - on his scalp, on his face, in his ears, up his nose, on his arms and legs, on his tummy . . . you get the idea.

Sadly, these were taken after treatment began (after the blisters had drained and began to heal - these were taken when he was on prednisone and the antibiotic). The rashes don't show up quite as well in the pictures - it was much brighter (at times), and sometimes it looked like his face was dirty. Just looking at those pictures made me cry - some of the pictures looked stretched-out, though I know it was because he lost so much weight. It was scary looking at those - he was way, way, way too skinny.

Compared with now:

(The one of his face was taken after the benadryl . . . his eyes were red and swollen as well).
Obviously, the rash is not as bad. He has the red bumpy rash on his cheeks, with a few spots here and there, but nothing in comparison to the last time. This time, the rash started with the red spots (not quite hives, but close) and were replaced with a bunch of tiny red, itchy bumps. It's frustrating because he's still on the medication to clear up the rash from May! (He still had remnants on his feet, legs, and hands). We've switched soaps, lotions, and hair products (we now use vanicream); I have made sure all of my makeup is free from anything that we know causes a reaction; I make our laundry soap (with bars of the vanicream stuff, and I still rinse twice); we've taken a few extras out of Isaiah's diet (no more avocados, grapefruit, garlic) . . . there's not much left to change! Grrr. =0)

Yeh, I'm a little frustrated and tired - I wish there was something more that I could do for him. You know, until God heals him. Isaiah has not slept well for the past 2 or 3 nights. =0) Last night was pretty bad - he was fussy (not really crying loudly, just whimpering in his sleep), and very jumpy. It was just a rough night. Of course his not eating isn't going to help with his tummy - I'm sure it has to bother him at least a little.

Please, keep him in your prayers. We have a long way to go before our September appointment (trust me, even a month is a long time to wait). =0) Okay, so a month isn't that bad. It just seems like an eternity considering we need some info. to take care of Isaiah now. I'm not sure what help, if any, they will be able to offer - I guess I am looking for them to say "Oh, yeh. This will take care of it all." Of course, I know that they are only human doctors, and that God is capable of much, much more than they can ever accomplish. With that said, just keep Isaiah in your prayers. =0)

Well, since I have had little sleep, I need to go to bed. =0)

God Bless,

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