Friday, June 19, 2009

I'm Seeing Spots!

Well, considering I haven't updated in a little bit - things have been sooooo hectic here. I figured that I should write a quick post to let you know that Isaiah has been doing okay. I would love to be able to say he is doing great, but he has been getting those lovely red spots (which haven't seemed to be acting like they have been . . . you know, disco-like). On top of that, he is flushing still. He has had some problems with swelling, but not as bad as before the Prednisone. I guess that means slowly things are returning to normal - I hope. The spots, though, have been a little weird this time. Last Monday, Isaiah got these red spots on his arms - just on his arms. Just spots - not raised or itchy. Just red spots like he had put droplets of red Kool-Aide on his arms (that's pretty much what the disco light-like spots look like). The spots showed up again on Tuesday, but briefly. By Wednesday, they showed up and were itchy. On Thursday, they were raised with little blisters this time. By Friday, those spots began to heal and are now scabbed from the blisters. They aren't big spots, but still weird. He's never had this before, but I know that it's not uncommon with masto.

With the heat here, I'm not too surprised that Isaiah's body is reacting - it's hot! He even had problems yesterday - it was 103 without the heat index. YUK! I think had I known how hot it was, I would have kept him indoors the entire day. Not knowing (until it was too late, anyway) caused a lot of flushing (even with the vest), and we almost had another hospital visit. Anaphylaxis takes many forms, and can include unconsciousness . . . Isaiah became lethargic and just acted very different. Thankfully, no Epi was needed, as Benadryl and Hydroxyzine seemed to stop the reaction . . . along with air conditioning and a bit of rest.

Today, the weather remained the same. I miss cool/cold weather. =0) Yeah, I know, Florida is not the place for such weather. On the other hand, Isaiah's body doesn't like cold weather either. If anybody knows a place where the weather stays in the 60's and lower 70's all year, please let me know . . . I'd move there in a heartbeat! ;0)

The Prednisone is causing Isaiah to have a slightly rounder face - it works with his dimples, though. =0) It's actually nice to see him with a little chubs on the cheeks. Before the endoscopy, Isaiah was soooo skinny. I think the last time he was weighed (at the hospital almost 2 weeks ago), he weighed around 50 pounds! =0) He's tall, so 50 works for him. I have to say though, when he went to bed last night his face wasn't as full as it was when he got up this morning - his face was so round! =0)

I am looking for a medical stroller for Isaiah, to help on outings. Baby strollers aren't big enough nor strong enough for Isaiah (a regular baby stroller goes up to 35/40 pounds, our old one only went up to 45 . . . and Isaiah was way too long for it). I found one, but I'm having a hard time finding a place that will work with insurance companies - the things are expensive!!! =0) Seriously, this stroller costs around $450 . . . on sale . . . and it's one of the cheaper ones! I found it on sale, which would be nicer for the insurance, but the places who offer it do not work with insurance companies - I was told that they would submit paperwork for me to be reimbursed . . . yeah, like I have that kind of money lying around. =0) Right now, we have a wagon. It works, it's just bulky . . . and it doesn't fit well in the trunk of my car. So, when Isaiah's legs hurt or he isn't feeling well (like yesterday), I end up carrying him . . . my 50-pound child . . . who's tall . . . yeah, it hurts. =0) I love it when he wants me to hold him - you know, it brings back all those memories of him being a little baby. He's just getting too big. =0( (it's a good thing, I know) =0)

We are still waiting on the results from the blood tests (platelet count). We should have heard something by today (I called, but got no response . . . yeah, it's the pediatrician's office that will no longer be seeing him). =0) Really, I don't like switching doctors. In MD, I used the same PCP for over 20 years. However, there are times where a new PCP might be in order. Anyway, hopefully we will know the results by tomorrow, but it's hard to say. I guess no phone call is better than an urgent one, right? I'll keep you posted.

In other, not-so-medical news, Isaiah got to play in a ball pit for the first time ever (if you think about it, ball pits are usually in restaurants or in malls near the food courts - places Isaiah can't go)! He was sooooo excited and hasn't stopped talking about it since (thanks Tracy, Kathy, Peggy, and April!!!)! =0) He thoroughly enjoyed himself and has asked to go back to the "playground room." =0)

Oh yeah, and guess who is turning 4 on Thursday???? Yup, my little baby boy will be 4!!! Yes, I will post pics of his special day!! =0)

That's all for our happenings around here. There's a lot to keep up with . . . oh, yeah, one more thing. You know how I was talking about the heat??? My dad (yup, you read that right, my dad) is even complaining about the heat! HA! This is coming from the man that wants to roast all of us in the house, he's actually saying it's hot! =0) Just thought that was funny. =0)

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