A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. She was once so petite, so little that we were trying to cram every calorie possible into her, and now her biggest obstacle is her steroid swollen tummy. We have accepted that she will never again look the same way, but it's sad. No, I don't feel that she's less beautiful, but this has been difficult on us all for so many reasons. Seeing her so uncomfortable, so sad about her own appearance, not able to run & be free like she'd like. She noted that her hair is darkening. She's FINALLY eating, at least! She came home from school yesterday announcing that she had tried tomato soup- and liked it! I about died! When she's off of the steroids, when she loses the water weight, she will likely have finally gained the weight that we've been waiting for, her hair will probably be brown. It's just so weird. She was changed so quickly that we barely had a chance to adjust. The changes in her meds are definitely helping. She seems to have a little more energy! Did I mention last update that she's been jumping a bit in her therapy sessions??? That is huge. And tonight she was trying to hurry her brother up. He was walking too slowly for her. That was also a first! I was very happy to hear that! The rash is almost gone. She's doing well for the most part. The only concern with her is that she says her chest is hurting on and off. It seems to be right in the middle, at the top of the bone. I don't think it's what the other kids seem to be complaining about lately, but I have a note to ask when we go back.
My son is the one we're watching right now. I have learned not to jump to conclusions. We watch, we observe, we research, we listen, we talk to the doctor. That said, I am not panicking, and I'm hoping I'm just being paranoid. I'm fairly certain that it's nothing, but... Ok, so he has psoriasis. He's had it since 2007-2008. Usually when he says his leg hurts or what not, it's usually said in a "I need more attention!" type of way. Recently we had a discussion about his handwriting being so bad. I asked him why it's pretty good sometimes but not often. He said his hands hurt. Hmmm. Ok. Well, they don't look inflammed. I noted it, but didn't dwell. Well, last night I happened to notice that his thumb nail looked funny. They say that nail bed changes and nail pitting are signs of psoriatic arthritis. I didn't say anything to him about it, but I was a little freaked out at how his nail bed looked white and bubbly and his nail looked abnormal. I came out to the living room to tell Kevin to check it out later. This morning when I got up he was already up. He said that his ankle hurt. He was limping a little bit. After a while I noted that he was able to put weight on it comfortably. I casually asked him about it a few more times, determined that it was probably fine, and put it in the back of my mind. Tonight as I was tucking him into bed, I asked how his ankle is. He said it's fine, but his foot hurt near the toe area. He said it hurt "in a circle"- both sides of the foot. Still not panicking, I am making a list of questions to ask his dermatologist. Thank God I made his appointment 6 months ago.
Last big thing to note, Kevin is on the low iodine diet that he needs to maintain in order to go in for his radiation. For those that are new or need a refresher on that one, he had his thyroid removed in March of 2009. When they took it, a pathologist found a teeny, tiny speck of cancerous cells. Generally, at that news most doctors would probably have done the radiation then, just to err on the side of caution. Well, it took so long to find this out and she was so not worried about it. Eventually, she decided that he should got for testing to make sure there were no cancerous cells in the area. The results showed "something". There was "uptake". I was a bit floored at this because she tells me at MY thyroid appointment when Kevin wasn't even with me, so I didn't think to ask some of the questions that I would have had I been prepared for this type of thing. Therefore, all we have to go on is my assumption that the cells are probably just abnormal and they want to blast them to be on the safe side. Fair enough. So, he has to go back off of his Synthroid, the one medicine that makes him feel human instead of like a dried up slug that's been thrown and then stepped on, switch to a med to wean off for a week and then go with no meds for another 2-3. Hopefully at that point his labs will be done and show the right amount of thyroid hormone so that he can go for the radiation. After that he'll have to stay off of the meds a little longer in order to have a total body scan as a final cancer check. And then maybe, just maybe after that, he can go back to having a life again. He's had to devote a large chunk of the last few months to his health & to Emily's since he was the one home. It was a very weird role reversal for him, and he's really looking forward to having his life back. I'm confident that this is all just a precaution and things will be "normal" again soon, though it's frustrating timing on his docs part. If she had proper follow through before this would have been done before we had other stuff in the way! Ah, well. Can't change it...
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, January 14, 2011
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