Thursday, September 15, 2011

A Little Good News :)


I'm happy to report a little good news.  :)  While she's having some minor issues, Emily continues to do well since starting the Rituxan.  I'm just thrilled!!!  She says that an area of her lower back always hurts, and her wrist to elbow has been flaring a bit, but not enough for her to want to go back up on her Prednisone.  She has chosen to continue on the 4.5MG dosing instead of going back up to 6MG.  While it may not seem like a big difference, she feels it.  She is also continuing to lose some of her steroid-belly.  We don't really notice it on her, but we notice in the way her shirts fit her.  The shirts that we ran out and bought her back in November when she suddenly gained 30 lbs are starting to look more like long baggy shirts.  I'm hoping it will be no time before they look like dresses again.

I always worry about her with school.  She likes school, and she works really hard.  She LOVES to read, to write, to be creative.  She loves her teacher this year, too!  Her school is amazing, and they always put so much time and consideration into where the best classroom placement is for her.  I really couldn't have her in a better place than where she is now.  This is the fifth year in a row now that her teacher has told me that her class "mothers" her.  I was told last night at open house that her classmates rally around her.  I have worried often about her being teased or bullied because of the Prednisone weight.  While it has happened on a small scale, she has yet to come home to me in tears.

Also at the open house, they told me how shocked they all were at how well she is doing  :)  Her school physical therapist had a goal for her to climb 5 stairs.  Thanks to Rituxan, she's pretty much given up the elevator.  (I forgot- she did say her knee hurt last night, but not enough to change med dosing for.)  They are all so impressed over how well she's doing.  I'm so glad.  Last school year looked so bleak for her; I didn't think we'd be able to keep her in school.  What a difference a small change can make, even when it looks so scary at first.

She is still stressing over her port placement.  We have talked about it every night now.  Just talking seems to be helping.  Before she told us what was wrong, when she was trying to tough it out, she was spending a lot of nights in my bedroom.  Tonight we discussed how God provides for our needs, we discussed what "Let go, let God" means, and how to accomplish it, and we talked about the phrase "What would Jesus do?",  thanks to my son.  I am so happy that they love church!  Emily especially can draw strength when she's down or feeling bad.  I'm thrilled that she has come to love our Lord!

We could use continued prayers if you would.   We have her port placement on Sept 27th.  It will be a very long day.  Please pray for a great surgeon, for their hand to be guided and their mind as well.  Thank you!

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