Monday, August 25, 2008
I'm a member of a few different support groups and even though I don't post all that often I've gotten some great advice over the years. Uveitis.org is another wonderful resource I've come to rely on. I read something there yesterday that stopped me in my tracks. There was a mother who asked Dr. Foster about her 6 year old daughters chronic uveitis. (Sounds a little too familiar don't ya think??) She had been told by another doctor that no matter what her daughter will develop a cataract due to the steroid drops. It doesn't matter how long or how often the drops are used, the steroid drops cause cataracts. Dr. Foster agrees with the other doctor. He says that in 50% of patients at 850 drops a cataract begins. It doesn't matter if those 850 drops were used in 6 months or over many, many years of use. It will happen and there is nothing that can be done to prevent it. So it looks like we can add cataracts to Jordan's list of issues. I have no idea how many drops we've used in the last 3+ years but it's been a lot. Hopefully she'll go into remission but her eyes are not responding to the Enbrel. I'm afraid we're going to have to move onto Remicade. I've read that most JRA kids with uveitis respond well to Remicade but it's an IV infusion done over a 2 hour period at the hospital. Not exactly something we really want to do. Of course, if it comes down to it we'll do the Remicade.
All this has taken a toll on Jordan. She doesn't feel like a regular kid, she doesn't know what it's like to not have JRA & uveitis. Regular kids don't have to stick a needle in their thigh once a week and see 3 or 4 different doctors all the time. Or take medicines that make you feel sick. Not to mention all the blood tests. This disease has taken away enough from Jordan. I'll be damned if it's going to take her sight too.
Friday, August 22, 2008
These are the others I've made over the past few months.
This is for the new baby Tracey and Scot are expecting
This was for a friend
This one is Charlie's
And this is the replacement for Pink. And I made a matching doll blanket for her. Jordan picked out the yarn and pattern. We're finally on the way to putting Pink up so she doesn't totally fall apart.
Thursday, August 21, 2008
Wednesday, August 13, 2008
Now, is it me or is it just way too easy to give Jordan her shot? She's amazing. We've been doing the injections now for about 2 months and she's ready to do it on her own. She's had no side effects which is great and up until this past week or so her joints looked and felt good. She's been saying her knees hurt in the morning again so who knows what's going on in her little body. Her eyes have not responded at all to the Enbrel and that scares me. If her eyes don't respond we may need to up her current medications, switch to something else or add yet another icky med. I pray she responds but she's a stubborn little girl (and so is her body) so I'm not expecting it any time soon.
School starts on Tuesday and hopefully she gets another understanding teacher. I was thinking that I may go in one day and talk to the class about Jordan's arthritis. Last year there were a few kids who didn't understand why Jordan got to sat in a chair instead of the floor like the rest of the class and why she was always seeing the nurse. I don't expect 5-6 year olds to fully understand but I'd like them to see that Jordan isn't faking when she says she hurts or doesn't feel well.
And a recent picture if the kids. These 2 fight like cats and dogs but really they'd be lost without each other. Matthew is going to be so bored when school starts.
Monday, August 4, 2008
These first 2 videos are from their second time skating, 7/9
And this was yesterday, 8/3
They've come a long way! Matthew even wore his hockey skates for a while. He's having a hard time with them because of the way the blades are rockered. Regular figure skates have a straight blade and he does really good when he's using those. When he puts on the hockey skates he tends to lean back for support and falls right on his butt. He'll get it eventually!
And a little about Jordan's JRA. Jordan is doing really well. The Enbrel is helping her joints but as of last Thursday it hasn't helped her eyes at all. I'm not sure what will happen if her eyes don't improve. I've decided that we need to find another ophthalmologist because the one she's seeing now has gotten to the point where he's not treating her like he should be. Jordan has Uveitis and with the type of JRA she has she is at risk if losing her vision if she is not treated the right way. So we'll be making even more trips down to CHLA but she'll be getting the treatment she needs to save her sight. I just hope gas prices keep going down...