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National Institute of Health

April 22nd - We are a few days away from heading to Maryland to the National Institute of Health (NIH).  There Erin will undergo a week of evaluations so they can come up with a list of recommendations for us on how to treat her Chronic Graft vs. Host Disease (CGvHD).

The initial results from her muscle biopsy towards CGvHD of the muscle.  Her recovery from the biopsy has been more involved than we thought it would be.  I think that the fact that her muscles were already having issues made everything way worse.  She was on crutches for a good 10 days and she is still using them as needed now.  Because she wasn't putting any pressure on her right leg, it liked being bent.  So that means that when it came time for her to straighten it, the leg would not go straight.  Over the course of a few days, we have been working on her leg with various stretches and exercises to get it to straighten out a little more.  It is working.  Slow and steady is the motto these days.

She is now on a few medications (including steroids) to suppress her immune system to get her CGvHD symptoms to settle down a bit.  This is working.  Her muscles that are usually SUPER tight ALL OF THE TIME have been loosening up slowing.  As things loosen up, it is our goal to get her stretching more.  We want her flexibility, mobility and strength to all improve as she loosens.  Physical therapy is a big deal now.  We have to move slowly and carefully, though, as to not hurt her.  She is delicate to say the least, but unbelievably tough at the same time.  Amazing overall.

Please continue to say prayers for her.  She is frustrated with all of this.  Who wouldn't be?  It is finally looking like spring may be here and she just wants to play and ride her bike.  We will get her there.  Unfortunately, not without another lesson in patience. 

Bottom line....knowledge is power and next week will bring a TON of that around thanks to the NIH!

Thank you for your continued love, thoughts and prayers.  Please remember Keira, too, as she has returned to the hospital in preparation for her bone marrow transplant.  As we will be in Maryland looking for answers, she will be here receiving hers.  xoxoxoxo
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Comments

7 Comments

linda kilbane
By linda kilbane
Wow,Erin now you are heading for Washington. The journey goes on. You are one tough cookie and such an inspiration for Keira and all of us. We will pray that soon all of these issues wll be gone and you will get to enjoy your summer as you should. Kevin and Jenni, thank you for your help friendship and example.
Sharon Pilarczyk
By Sharon Pilarczyk
Hey my little Sweetheart- You know Benjie and I never forget you in our prayers and neither do my Mom and Daddy. They always ask about the cute little girl who used to live next door!! We love you all! Sharon
Kathy Alexander
By Kathy Alexander
prayers always ... safe travels to Maryland .. keeping Erin in my thoughts.. hugs and more hugs
colleen Mastalski
By Colleen Mastalski
Thoughts and prayers as always, and safe travels to Maryland
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Joyce Dame
By Joyce Dame
Erin you are a special and strong young lady. Everyone is praying for you to continue to fight this recent set back. Lots of Love & Prayers coming your way........ for you...... and your friend Keira
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Ginger Auletta
By Ginger Auletta
Of course, Erin is feeling all of this and hope that the trip to Maryland is benefical for her..she has been through so much for a young child her age. Wisdom from the staff at Maryland..and Peace/Comfort for Erin.
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Joann Cole
By Joann Cole
Erin and your family are in my prayers!! I am so sorry you have to go through this. My heart aches knowing this young child has to go through this. Love you all!
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1 person hearted this