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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.

Sunday, June 21, 2009

More Cause to Celebrate :D

We have now done 2 Enbrel injections here at home. Again I must say THANK GOD for Daddy. Tuesday morning rolls around and Jenna knows what's coming. The 1st at home shot was rough. She fought with all her might. But...we got it in without incident. She cried on my lap for a good long while afterwards. *sigh* I thought to myself, "HOW are we going to do this every week?!" Then the following Tuesday she didn't fight. She whimpered, and she cried...just a teeny scream. But no fight. *phew* After it was all done she barely sat on me at all and then was off and running. And the band-aid? Didn't even make it through the day. Now...for those that know KNOW how monumental that is. Band-aids are to stay on until they FALL OFF. We do NOT take off band-aids. Hmm...maybe we CAN survive this. The BEST part of all this? It really seems to be making a difference. We could see it almost immediately. At first we thought we must be nuts. There is no way that it can work that fast. Apparently it does! In speaking with others on Enbrel that is exactly what we have heard. SWEET!
But we still were wondering...will this work on her eyes? Studies have shown that this is not the preferred drug for Uveitis. Sure it works great for RA but what good is that if it won't help her Uveitis? We saw Dr. Pirone last Sunday on the 14th. I was SO scared to hear what she had to say. Guess what? She could not find a single cell no matter how hard she looked!!!! WHAT?! Are you serious? Holy Cow! How on Earth can that be? Praise God. My baby's eyes are safe once again. For now. I'll take it. So we now are on a very slow taper of drops again. PLEASE cells...PLEASE don't come back. Let the Enbrel be the answer. That was our last appointment with Dr. Pirone. We are moving to North Carolina next Sunday June 28th. We will sure miss her.
Then...on the 18th we had a follow up with Dr. Daihke. As soon as Nurse Suzanne saw her she could tell the Enbrel was working. She said she had NEVER seen Jenna moving so much! YES! We know! Then when Dr. Daihke came in he could see it too. It was so obvious that she was feeling better. He did a physical exam and found no evidence of swelling. Yay! He also said her last set of labs looked good. Still slightly anemic but nothing to be alarmed about. He has connections with the rheumatology department at Duke in Raleigh NC so he said he would send them an email about getting Jenna an appointment . SO excited about this. This will be "one stop shopping" for us as he put it. All the doctors she will need will be right there in one place. So eager to hear what they have to say.
So the next time I post should be from NC! Can't wait!!! Ciao 4 now peeps :-P

Sunday, June 7, 2009

Surprise, Surprise...

...I am late again. So when I last posted we had been to see Dr. Daihke about the switch to Enbrel. Our insurance approved it and I was told I would hear from them about copay and to schedule delivery. Uh huh....waited a few days...then called them. Only took one day for it to arrive after I called. Cool. Copay is reasonable too. WOO! I then called to schedule an appointment at the rheumatologist office to teach us how to give the injection. The woman who normally does this was on vacation. Great. But Dr. Daihkes nurse said not a problem..she could teach us. I thought I had prepared myself for this. The whole way down there my hands sweat, my heart raced and my mind was a jumbled mess. I was panicking. I didn't think I could do it. How can I stick a needle in my daughter knowing how terrified she is of them? Daddy to the rescue. He was cool as a cucumber!! Nurse Suzanne had us pegged the minute we walked in. She could see that Daddy was the clear choice to do the injections. Jenna suddenly had an attack of the nervous pees so I took her to the bathroom. While we were in there she and I talked about Daddy being the one to do her injections each week. She was not overly thrilled with this idea. I somehow managed to convince her and when we returned to the room Daddy and Nurse Suzanne were ready to go! Jenna sat on my lap and hugged my arm. Daddy washed his hands, cleaned her leg, pinched the skin and *poke* in and out. Done...OMG....BREATHE....I forgot to breathe. PHEW. It's done. Not so bad. Daddy was great! Jenna wasn't so bad herself. Screamed like a banshee but didn't move. Can it be this easy each week? God I sure hope so.
The next day we went to Dr. Pirones to check her eyes. I told her I would be pleasantly surprised to hear good news. I could just tell she was no better. Sure change :( So we are back up to 4x daily on Pred Forte as well as adding in Homatropine 2x daily. I HATE giving her those. She can't see and they make her even more photo phobic. BUT...I know she needs it so we do it. Something has got to give soon. Please. We go back in for another recheck on Sunday the 14th. PLEASE let it be better. Please.