Sunday, December 4, 2011

Two appointments tomorrow, two next week

As always, there's a lot going on this month.  Next week we have Emily's opthamologist appointment to make sure that her eyes are inflammation-free, and a dental cleaning for all 3 kids after that.  Tomorrow is a Shand's day for 2 out of 3 kids, and a pediatrician appointment for my oldest on Tuesday.

I am so excited to have my son's rheumatologist appointment tomorrow!  I was so sad that he had to miss the one that I made for him last month, but I just couldn't run (three hours away) back to the house from the hospital to pick him up, then get him back home and myself back to the hospital.  His psoriasis is soooo bad right now.  It makes me sad how bad it is.  After he uses my computer, I sweep up a pile of dead skin from my desk, my keyboard, my mouse, my chair, etc...  I feel so sad for him.  It can't be comfortable.  We've run out of options.  Everything that I read says "do not use steroid creams for more than 5% body coverage".  Well, that leaves Aquaphor, but that is so oily and greasy that he hates it.  He begs us not to use it, he'll sneak off to bed or find some other way to avoid it.  When the rheumy saw him unofficially he had said that there is a once a month injection that should do the trick.  He also said they would likely order an MRI to check his jaw.  To be honest, I prefer that over the dentist's panoramic.  I think the dentists look for TMJ, but probably not arthritis.  In fact, one thing that has fed my fear was the first statement that I recall from our jaw session at this summer's arthritis conference.  The doctor leading it said that up to 85% of children start with arthritis in their jaw, but because it's silent (not painful) it doesn't get caught until other joints pop up or until the jaw gets very bad.  I try very hard to keep a level head, to not panic, to think of all of the possibilities first instead of dramatically rushing in to cling to the first crazy thing that comes up.  I don't have much time or patience for drama.  I carefully analyze, & I've learned how not to panic until I know something is fact.  By then, I've usually read all that I need to know to not panic.  What I know is:  my son does not have any blood markers that concretely show any evidence of arthritis.  He does show positive for the one trait that they believe points to psoriasis.  He has had nail pitting and other nail changes that often can lead to arthritis, and his fingers look like my daughter's when she's not on steroids.  He has stubby, swollen-looking fingers, "dactyl", I believe they are called.  I know the signs.  I also happen to know that just because the signs are there doesn't mean that we have to worry yet.  My heart did stop when he told me his jaw was clicking and it hurt, but I also knew that it could be "just" TMJ.  I guess we'll find out soon enough...

Emily's doing ok.  Honestly, when people ask me how she is doing, I really never know how to answer.  To me, a good day for her would still be very hard for other people.  It looks to me that her staph infection is gone (thank you, Jesus!).    She developed a cold the week after coming home from the hospital, which turned into something.  I'm pretty sure it's a sinus infection, but the kids were talking and so the doctor just handed me the prescriptions and didn't really say for sure what's wrong.  Any which way, she's feeling better now.  She still has congestion and a bit of a cough, but it's nothing like it was.  Her cough was terrible!  I'm not sure what this means right now, but she pointed out that she has what look like two nodules on her hands.  Usually the nodules only come up when her inflammation isn't controlled, when one of her diseases is active.  She doesn't seem to be actively flaring, so I'm not really sure what to think about that.  I guess we'll find out tomorrow.

And finally, my oldest daughter is sick.  I'm guessing that whatever my little people had that required antibiotics was passed to her.  Sinus infection would make sense for her, too.  She's been miserable.  She's already missed two days of school from last week, and she'll be out at least the next two.  While I would love to take her to the doctor tomorrow, it's a Shands day so I will take her on Tuesday.  Usually when I go with her I don't need a symptom list, but this time we need to make sure that we discuss her bloody noses again.  She's had them for years.  She told me that she has a hard time stopping them, but usually they seem to come in the middle of the night or when I'm not around.  She gets them before school sometimes, but I usually get up after she leaves.  I couldn't believe how bad her nose was tonight.  Not to get graphic or anything but when I passed by the bathroom I saw her leaning over the garbage can.  I thought this was strange until I looked at the sink.  Then I panicked a second.  My sink and counter were filled with blood.  It was like she took a cup of it, poured it in the sink then took a brush and splattered it around.  She told me that she tried to stick a tissue up her nose to stop it but it got like sucked in and started to go down her throat.  Of course, this is my girl that won't take vitamins or medicine unless she feels like she's dying.  To get her to do anything that will help herself is impossible.  However, that just freaked me out!  We shall see what the doctor says on Tuesday.  I'll try to update on Tuesday about how tomorrow goes, too  :)  Maybe I can update quickly on my phone...  

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