Monday, December 15, 2008

It's raining, It's pouring...

And we got a pretty rainbow out of it :)































Tuesday, December 2, 2008

Recent Picutres

These are all random pics from the past few months. I'm feel about 90% now so I think it's time to get back into our regular routine :)

Aren't they cute???




Matty's birthday was interesting. I planned on making him this awesome hockey cake and it didn't happen. I was still having "seizures" and I couldn't draw a straight line to save my life. The good news was that he got a new bike and his Spider-Man blanket :)


This is from October right before my surgery. I was going to print it out and take it with me but I forgot.
These are from Thanksgiving. They look so grown up!



Matty was happy to have "spikey" hair :)


And, I have no idea why she's looking kinda moody...


Tuesday, November 18, 2008

It's been a while and a lot has been going on....

Lets see, since the last time I posted, I've been in the hospital TWICE, once for seizure like spells and once for my hysterectomy, Rick has been taking care of us, Matty turned 4, Jordan is kicking butt in school, had a pneumonia and scarlet fever, started Humira for her JRA and Uveitis, both kids can ride a 2 wheel bike without training wheels and we got to meet 3 LA Kings players!

Back in March we took the kids to a Kings game. It was our gift to J for her birthday. We just found out that Jordan's arthritis had spread and she was in a flare. This always happens around her birthday. Remember she was officially diagnosed and had surgery 3 weeks before she turned 3? Well that's how it's been every year since. Something else pops up or she's flaring or her eyes are a mess.

Anyway, at that game we made signs to hold up during pre game warm ups. Well Jordan has a huge crush on Anze Kopitar. Her sign said "I love Kopitar" and it had some hearts on it. At the end of the warm up session he came over and gave Jordan a puck.

She was so excited and kept saying this was the BESTEST birthday present ever. I was so touched that I emailed the Kings and asked them to pass on the email to Kopitar and thank him for making J so happy and allowing us to forget about her issues for a night. 3 months later I got an email from the community relations manager asking if it was ok to post my email on their site and asked if we would be interested in meeting Kopitar sometime. Of course I said yes.

Months passed and I figured that it was never going to happen. Last week Rick decided to email the Kings and see if the meeting was still possible. After a few emails back and forth we were given tickets to last Saturdays game against Nashville. We still didn't know if the meet and greet was going to happen but we were happy to be going to a game for free. We got an email Friday night saying that the meeting was a go but to not tell the kids. It was hard to keep to ourselves but we did it.

After the game we met up with Jen, the community relations manager, and she took us down to the tunnel then into the media room. She told the kids we were going to see the zamboni but Jordan knew better. Jen asked Matty who his favorite player was and he said Dustin Brown. After about 10 minutes in the media room Dustin Brown comes walking in and immediately gets down to Matty's level and starts talking to him. He signed Matty's jersey and poster the he made.

Dustin leaves then Matty being Matty decides that at that very moment he needs to go to the bathroom. I asked him if he could hold it for a few more minutes but he couldn't. Rick took him to the bathroom and as they're walking back into the media room someone says "And here is Anze Kopitar!" Matty comes running down the hall yelling "KOPI!!!!!!" then comes up to him and tells him that he had to pee. Anze laughs and says "That's ok, I had to take a shower." :)

He signs the kids jerseys and Jordan tells him that the puck is the one he gave her in March. He told Jordan he remembered her. He was so nice to the kids and signed Jordan's poster she made especially for this game.


We got a family picture with Anze and as we were trying to get up I almost knocked us all down. I was only 2 weeks post op and I shouldn't have been down kneeling like that.
As we were leaving Erik Ersberg, the goalie, comes walking in and goes right down to Jordan and starts talking to her. He signed her jersey then we were all kicked out.


It was an amazing night and once again the Kings helped us forget all the negative things happening in our life right now. I know compared to many, many other families our problems are nothing but when it happens to your family it's a big deal. It seems that we have this black cloud hanging over us and we can't get out from under it. Jordan is flaring again but it isn't as bad as it could be. I'm getting better as each day passes and I'm hoping by Christmas to be 100% pain free. Rick has been wonderful! He's taken J to school, done all the shopping, cooking and cleaning not to mention taking care of me and making sure I don't do too much. If it wasn't for him everything would be a total mess right now. Not sure what I'm gonna do when he goes back to work....

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....


video


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
video

Matthew

video

And this was yesterday, 8/3
video

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...

Thursday, July 17, 2008

Why we're doing this

I've been toying with the idea of a family blog for a while now. When the kids were babies we had a web page for each but if you didn't update the page for a while they deleted the whole thing. By having a blog I can stop sending out mass emails and you can come here and look for updates on Jordan & Matty yourself. I'm guessing I'll update and add pictures maybe once a week, more if something interesting comes up.
So, this is our life with the Peanut & Bub.