I took Addison to the pediatrician today over something I've been putting off for a few weeks, hoping it was a fluke and would just go away. For over a month now, Addison has been waking up in the morning and from her naps with very swollen discolored hands - the longer she's been asleep, the worse it is and the longer they take to 'wake up'. Its taking up to 2 hours some days for her to be able to use her hands properly. Its like they are disconnected from the rest of her, if you hold something out to her, her hands shake and she can barely grasp something weakly.
Her hands were already weak and something we had been working on at therapy - her ability to push and pull is very severely behind. She's still not able to use baby toys like this:
Her hands just aren't strong enough to coordinate pushing the buttons at all. She still hasn't regained her pointing either - she's unable to use any fingers independently of one another. So she and I both were already frustrated with her dexterity, I really hope it doesn't get any worse.
Therapy is first thing in the morning so a lot of times they have noticed her fingers are purple still and stiff. They are the ones who told me I should probably get her a rheumatology checkup just to see if everything's okay.
Here are some pictures, they arent the best quality but you get the idea at least. The swelling is only in the finger joint from the hand to the knuckle. And its worst around her thumbs, thats where I see the most severe swelling and its the last place that the swelling 'resolves' throughout the day. She's been having random fevers that last a few hours and then go away completely which may or may not be related.... its hard to say with her.
In the last one you can see how her fingers all droop off to one side like they dont have bones or something when she's having one of these episodes.
Our biggest concern at this point it sounds like is Juvenile Arthritis. This seems so crazy to me, how would it fit in with the rest of her problems? Sometimes it seems like her little body just literally can't do anything right. Everything is so vague and I am frustrated that I'm to the point where I don't want to call the doctors when new things happen because I feel like a crazy person saying "I know she has 392048394 other things wrong but now her hands aren't working right either...." It just seems so impossible and uncorrelated that I feel like they will think I am crazy But when her therapists noticed and expressed their concern, I knew I couldn't put it off anymore.
So we ended up drawing several tubes of blood and if they don't show any internal inflammation, then I guess it must be some sort of circulation issue that happens while she's sleeping. The tests should be back Friday and we will have more of a game plan then I guess.
We do have some good news though, after the first of the year we will be going to 4 days a week of therapy, 2x speech and Pt and OT. I am so excited for what this will mean for Addison and hopefully the progress will come a little faster.