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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.

Wednesday, October 28, 2009

Last night was shot night...

...and it didn't go so well. I don't know what's going on with her. She has been so good about taking her meds. Until lately. Even her oral meds she puts up a stink about. I'm having a hard time getting her to take her Folate and her MTX. Yeah...I know...most kids are sub cu MTX. She is still oral. That will likely change at her next rheum appointment November 10th. Her weekly Enbrel injection has been so smooth since switching from the pre filled syringes to these that we mix ourselves. She has been saying it doesn't hurt. Last week she whined and cried a bit when it was shot time but not to bad. Last night? Wow. She put up a GOOD fight. Larry and I were not mentally prepared for that. OR physically prepared for that matter. We haven't had to restrain her for so long now and last night she reached for the needle as Larry was about to inject her. I don't watch so it's a good thing he saw her hand coming. I feel so bad. I can't say as I blame her. I'd be sick of all this too if I were her! It sucks! No other way to put it. We did finally calm her down enough to get it done. And Mommy got some real good snuggle time afterwards. Not gonna complain about that :) Once all was quiet I talked with her about the importance of taking these medicines. She is so young, I don't think she can make the connection in these awful meds being what has taken her "boo boos" away. So I tried to explain it as best I can and I think she got it. Doesn't really make it any easier though.
On a good note, we went to Duke Eye last Wednesday for her follow up with Dr.Wallace. He said she was all quiet except for a rare floater in the left eye. PHEW! Small bit of bad news is that her pressures were WAY to high. He says short term while on drops is not a concern. Long term is where the dangers lie. So we are doing a quick 1 week taper and hoping the cells don't return before her next appointment on December 2nd. He also said that when the cells come back again she can't use pred forte. She obviously can't tolerate it. He also recommends against changing any of her meds at this point until we know for sure her eyes will remain quiet for the time being. However, the rheum had said that if her eyes showed any inflammation she was taking her off the Enbrel and switching to Humira. So...who do I listen to? Do I tell them , "hey...you two battle this out and let me know what you come up with."? I don't know...we shall see.
As always I thank you all for reading about Jenna Beans Journey. Love and hugs to all of you.