Saturday, June 20, 2009

For anyone who doesn't know Jordan's situation...

I wrote this last year for our Arthritis Walk but I thought I'd add it to our blog for anyone new who comes across it or for anyone who's forgotten what it is exactly what we deal with on a day to day basis.


One of the last things any parent wants to hear is that there is something wrong with their child. After 6 months of not knowing what was wrong with our daughter, Jordan, we finally had an answer and it wasn't anything we were expecting. I was told Jordan had Juvenile Rheumatoid Arthritis. I was in shock and I remember thinking, She's not even 3.... kids don't get arthritis. There has to be another explanation. My daughter does not have arthritis. Finally I accepted that Jordan did indeed have arthritis. She had surgery a few weeks before she turned 3, which confirmed the JRA diagnosis. A month later we saw a pediatric rheumatologist. Jordan started her medication and we thought she was doing pretty good. 6 months after her diagnosis we found out that she had inflammation in her eyes. It's been a roller coaster ride ever since. Here we are 4 years later I know so much more about JRA. Thankfully she has more good days then bad. She's on weekly medications, sees her rheumatologist every 8 weeks and if we're lucky she only sees her eye Dr. every 3 months. Usually it's about every 6-8 weeks. Jordan had to have a joint injection and it was one of the worst things I've ever sat through. Usually an injection will last about 6 month but Jordan's only worked for 6 weeks. About 3 months after the injection, I noticed her other knee has started to swell. Her arthritis is spreading. She’s now on Humira and methotrexate injections. She has a hard time fighting off infections because of these medications so she’s often sick and misses school. I keep reminding myself that Jordan has a mild case of JRA. Yes, she has days where she’s miserable but here are so many other kids who are sicker then she is. They can't walk, run or play. This is no way for a child to live. As a mother it breaks my heart to see my baby in pain and uncomfortable. There is nothing I can do to comfort her and it is a horrible feeling.

Thursday, June 11, 2009

We did this!!

I know we can't take all the credit, but Rick and I made these 2 perfect little monsters. They amaze me yet drive me insane daily. But then I get a photo like this and all that goes away and I think, WE did that! 2 perfect little people...


So, Jordan is totally crazy over this boy, Zach. He's a good kid and they've known each other pretty much since birth. Rick and Ryan grew up in the same neighborhood, played little league together and now we're raising our families next door to each other. From the day we moved in I saw the little sparkle in J's eye when Zach was around. She's just a baby and really she shouldn't be thinking about boys yet but she is. Maybe it's just a faze. Or maybe this is the beginning of what we'll get to deal with for the next 10+ years. I just hope she breaks a few hearts and that it's not always her getting hurt.


And, Matthew finishes up Pre K soon. We can't decide if we should keep him in through July or let him have most of the summer off. School starts August 19 so if he goes through July he'll have a few weeks off. He only goes 2 half days a week but he likes it. And it keep him out of my hair considering all of a sudden he needs to be entertained A L L T H E T I M E!!! I love my Bub but he really needs to become a little more independent again. Not sure what happened but he seems to need to be with me all the time. I was trying to remember when it started and I believe it was right around when I was in the hospital in the fall. I really should be happy he still wants me. I know there will come a day when I'll be chopped liver.

So tonight as the kids are sleeping and I'm looking at these new photos I'm wondering where did my babies go?? I swear I just had a baby girl. Didn't I just get a positive pregnancy test telling us #2 was on the way?? I'm not really going to be 35 am I? What happened to the last 7 years of my life? It's all a blur until I look at the pictures like these...












And then I remember it all.

Sunday, June 7, 2009

AHHHHHH!!!!!

SED rate back up, left wrist is "thick." What does this mean?? Not too sure but it doesn't sound too good. Good news is her eyes are still "quiet." I could shout that from the roof top and only a select few would know what I was talking about. The Humira seems to be doing it's job as far as the eyes go but now we're worried about her joints. Why can't we get to a point where EVERYTHING looks good and stay there?

J's last day of school was Friday so it's time for Mommy to keep her busy. It's gonna be hard considering Momma doesn't feel well most days. I'm still waiting for my referral to the rheumatologist. What are the odds? My left wrist has been swollen and stiff for a few weeks and my index finger has been swollen for who knows how long. It hurts pretty bad too. The rest of my body just aches and feels like I'm covered in bruises. Both of us with RA? Guess we'll see.

Bub will be finishing up pre K in a few weeks. Come August both kiddos will be in school. What am I going to do with myself? Hmmmm.... I can make all those different doc appointments I keep putting off. I can take an online class or 2 and if at all possible I could get a nice DSLR and pratice some photography. Yeah, I pick that. I'd love to do some random photography stuff once the kids are in school. Now to find the funds to get a camera and a lens. Some day....

Oh and we took the kids to see Taylor Swift on 5/24. The show was awesome!!! J had a great time and Matty, well Matty fell asleep. Ahhh.... to be a man and be able to fall asleep anywhere at any time.

On the way to San Diego
















Before the show















At the show