Monday, August 25, 2008

It's just not fair

Could you imagine these eyes having cataracts? How about not being able to see at all? Those aren't things a 6 year old- or any child- has to worry about,right? Oh how I wish that were true.

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

This is what's keeping me busy these days

Other then the kids of course! I've started crocheting again!! It has been well over a year since I tried to make Miss J a replacement for Pink. I couldn't get it right so I gave up. One day Matty and I were in Walmart and I was in the craft section to buy some cake stuff for J's birthday. After getting what I needed I strolled down the knitting/crochet aisle. I saw a teach yourself to crochet book that had a set of hooks, so I got it. Within a day or 2 I was making the kids cuddle blankets. Next thing I knew I was making blankets for Nathan and Charlie. Rick also asked for one so I'm in the process of making one for him. I'm working on his between the other projects I have going. I came across an awesome superhero afghan ... AKA the Spidey web afghan. Matty saw it and screamed that he NEEDED one for his bed. I thought this would be the perfect gift for his birthday. I started on it Sunday while the kids were with Grandma and I work on it after they're in bed. Normally it would take me about 2 weeks to finish but since I only get to work on it for about 1-2 hours a day, I'm hoping it's done by his party. It's awesome and I know he's going to love it!


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

First grade...


Do you remember how long it took for Jordan to get here?? It seemed like I was pregnant forever. She wanted to come early, then she was late and we had to evict her! It's been a very fast 6 years and now she's a first grader. She was so excited to go back to school. The night before school started she made her lunch all by herself, got her back pack ready to do and laid out her clothes. She was more then ready to go back. She's in a first/second grade class so she may be doing some second grade work. I know she goes to a first grade class for math but everything else is in her regular class. She had a great first day but the second day she was sore and achy. At first I was thinking she was at the start of another flare but this morning she said she felt better. Now I think she just over did it on Tuesday. I guess we'll see what happens over the next few days.

Wednesday, August 13, 2008

It shouldn't be this easy....



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

The kids can skate!!

So the little monsters have been taking a skating class for about 5 weeks. Both took to it right away :) At first they kinda looked like little penguins but now both can actually glide and go pretty fast.

These first 2 videos are from their second time skating, 7/9
Jordan


Matthew



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...