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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Friday, March 12, 2010

I am SO far behind...

...that I don't even know where to begin! Let's see if I can keep this all straight and get it down in order. I have a feeling that isn't going to happen! :}~
Okay so January 27th Jenna had a follow up with Dr. Wallace at Duke Eye. I held my breath as always...waiting....still looking....still clear! YES! Phew! Excellent news. So we taper a little bit more. From 4x daily to now 2x daily. We go back on February 27th for another recheck. Holding my breath again...c'mon....please....he turns around, smiles and says, "Still looks the same. All clear and quiet." YAHOO!!! Taper to 1x daily and come back in a month. As we are walking down the hall I take Jenna's hands and start dancing and singing. She is HORRIFIED! I told her I don't care I'm dancing with or without you right here in the hallway. That got a giggle out of her :) So we get into the truck to make the 2 hour 15 minute trek back home. I look at the clock. We were in there for 15 minutes. Four and a half hours of driving for a 15 minute appointment. Hmm...may have to look into other options. It is something Larry and I have gone back and forth over. She is seeing some of the best doctors in the country at Duke. This is the WHOLE reason we moved here. But...is there anyone closer to us that would be just as good. Possibly? So I make a phone call to her pediatrician. They make some calls and call me back a few days later. There is a pediatric opthamologist that specializes in Uveitis in Concord. TWENTY minutes from us. Fantastic! The route to get there is all back roads too. No highway driving! WOOT. So we go see this new doctor on March 30th. If I don't feel comfortable then we go back to Duke. No big. Now...the peds rheum is another issue. The GOOD news is that Brenners Childrens Hospital in Winston-Salem has a peds rheum and they are about 1 hour from us. It's a very easy drive and a great hospital. The BAD news is that they don't have an opening until November 1st. Crud. So we will continue to trek to Duke Childrens for her rheums until November. She goes to Duke on April 13th. They go a LONG time in between appointments which I do not care for. I likely will only need to make the drive there one more time after the April appointment. Hopefully Brenners will see her more frequently. The last two times that the rheums have seen her she has no obvious signs of an arthritis flare. No swelling, no heat, decent flexibility yet she is still in pain. They have no answer for it. She isn't making this up. Her feet hurt. Her knees hurt. Her back, her thighs, her hip, now her fingers. Okay so it isn't an arthritis flare but it's SOMETHING. Maybe Brenners can solve this for her. I sure hope so. Another issue she has been dealing with on top of all this pain is the stomach aches I have heard of from MTX have finally hit her. When it hurts she says she feels like she is hungry but then when she tries to eat it hurts too much. She is also now losing her hair. Started a little bit at a time. Just strands here and there. Now it comes out in clumps. She doesn't know. I've been hiding it. It would crush her. She loves her hair. I called her rheum about all this. We are going to back off the MTX a little bit. Going from .8 ml to .6 ml. Also doubling the daily folate and adding prevacid. We are also going to try Mobic as an alternative to Motrin. Because of her frequent pain we were having to use the Motrin a lot and it didn't seem to bring much relief. Mobic is a once daily med and is supposed to work more effectively. We shall see. We haven't been able to try all this out yet because Jenna has been sick AGAIN. Last Thursday she came home with a headache and a fever. It was the 1st day with the Mobic so I gave her some thinking it would work on the fever as well as the pain. Her fever continued to climb. I called our pharmacist and he confirmed that yes the Mobic should attack the fever same as Motrin. Well it didn't. So we switched back to Motrin. This was a stubborn fever. Had to use Tylenol AND Motrin on a 1 every 3 hours cycle. Turns out she had an ear infection so she is back on antibiotics. After 2 days of the antibiotic she was able to return to school. Crossing my fingers she can stay in for more than a month! Considering a bubble for her. This morning she took her 1st Prevacid. Tonight we will start the Mobic. This weekend she gets MTX and Humira. So much for such a little body. Well I think that's it for now. Stay tuned. I promise to TRY to be better about updates!! Thanks for reading :o)

1 comment:

neil said...

Keep at it........
If the uveitis doesn't remit with Humira, try Remicade. If that doesn't remit it, try chlorambucil or cellcept. Uveitis will evolve if not kept in remission. Remission now, and continually is important.
Been there done that........for 25 years
Best of luck.
Sebastian