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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.

Saturday, April 10, 2010

Starting to Believe


I have been afraid to say it but what the heck. I am starting to believe that remission IS indeed possible for my Bean. Knock on some wood somewhere people!! I continue to be amazed by how well she is doing. I mean it is truly incredible. Would this have happened had we stayed in Maine?? I really don't believe it would have.
So we saw Dr. Brown last week at Cabarrus Eye Center. I was so nervous about switching. Let me just tell you. I LOVE HER!! She made us feel so comfortable. More importantly, she spoke to me as though I were an equal. THANK YOU. I always feel so stupid and intimidated by doctors. Like the things they say go WAY over my head. So I just nod my head and say, "Uh huh". Despite the fact that I still have no clue. She said that Jenna's eyes looked BEAUTIFUL, crystal clear. I felt like crying people. Then she said, "Do you know the difference between cells and a flare?". Uh...no. No one has ever bothered with THAT detail. I had no clue that there was any difference. Okay so let me see if I can explain this. She did it SO well and I don't want to butcher it. Cells are like a snow globe that you just shook up. A flare is like smoke passing in front of a light in a dark room. Now, of course I can't recall what causes these two different things to happen, but I CAN tell you Bean has NEITHER!! No cells and no flare!! Her eyes look perfectly healthy and NORMAL! We then discussed the use of Lotemax as opposed to pred forte. Dr. Wallace had switched her to Lotemax because pred forte shot her pressures up. Again I hope I don't mess this up. I believe what she said was that Lotemax only works on the surface of the eye. Once it goes beyond that it metabolizes into the body which is the whole reason why it doesn't increase pressure. Sooo....how can it actually be effective against Uveitis? Yes pred forte will increase her pressures which over long periods of time would be dangerous but short term and watched carefully is okay. Dr. Brown feels it was the Humira getting the Uveitis under control NOT the Lotemax. Hunh...well okay then. YAY Humira!! She wants to see her again in six weeks just to be sure they stay clear. Then we can start stretching out our visits. Oh and the drive? Piece of cake!!
She continues to be pain free. Running, jumping, climbing, playing, falling like a "normal" 6 year old would. It is so amazing to see. Truly amazing. She has an insatiable appetite! It's really quite funny. She has started to put some meat on her bones and looks healthy now. Again, at the risk of over using this word. AMAZING. She is up and out of bed usually by six AM raring to start her day. Me? Not so much. But it is way better than dragging her out of bed knowing that she feels miserable. On the 28th we go see her new rheumatologists at Brenner's Children's Hospital. Eager to see and hear their take on everything.
As always thanks for reading!!

2 comments:

IWASNTBLOGGEDYESTERDAY said...

WOW. so pleased for Jenna and you :) I saw your post on Humira facebook site,so thought I'd pop over and see how you are going.


I bet you can't keep the smile off your face at the moment lol

I've jsut started Humira for RA and have jsut ahd my 4th dose. Uh I feel for little jenna, these inj sting big time, how is she coping at inj time? its only 10 seconds but it's a looong 10 secs lol

I've found its working well, no pain, more energy, bigger appetite(not what i need hahah) but getting really tired/sleepy at night,just like early pregnancy tired. ?

I've been rading through your old posts , you have had such a rough trot with this. I hope this puts jenna in remission for a looong time .
kind regards

Erika said...

YIPPEEEE!!!!!! That's really awesome! Yay Humira!!! Thank you for the education too, I had never heard that separation before or the diff! Thank you!

YAY!!!!!!!!