Thursday, March 3, 2011

Recent Gabriella Updates

Back in August 2010, Gabriella was taken off a routine medication given to most transplant kids called Valcyte. All kids are taken off this med at 90 days post transplant, Gabriella no different. It is used to prevent an outbreak of CMV, cytomegalovirus, in a transplant case where the recipient and/or the donor are positive for it. CMV is something minor to the average person but highly dangerous for a transplant case. Gabriella started to show elevated levels for CMV quickly after taking her off the medication, landing us in the hospital in August.

Here are those old posts:

August 20, 2010: Our unplanned vacation to the hospital

August 25, 2010: Chillin & Infusin'

August 31, 2010: Follow up on the CMV

After that very intensive treatment regimine, they put Gabriella back on the Valcyte for 6 months to give her body more time. Well, 6 months is up and we decided last week to stop the Valcyte. EEEK! We are hoping that it was just premature for Gabriella's system to come off of it in August and we will be successful this time! The highest risk for her to show active CMV is 3 months, giving us until June to closely monitor her. Since we have nothing major happening until the summer, we thought this was a good time to see what happens. We will be back on more frequent blood draws to watch for those levels and I will again be watching her like a hawk for those freckled spots she showed the first time. Our post-transplant journey and Gabriella's recovery has been so amazing, I couldn't have asked for a more perfect scenario. I am praying that this does not turn into a hurdle!

They also had to increase her cyclosporine levels once again, which is her most important immunosuppressant. She is growing and we are thankful for that!!!

Gabriella is doing wonderful between her homeschooling, homebound teachers, speech therapy and now attending the Kumon center. We had been having such a difficult time with her numbers in result of her aphasia. She was having the hardest time remembering anything past 10, but thanks to the Kumon method she is up to 30! The repetition is just what she needed for retaining the numbers and while she is still struggling a little, she is making progress! We are really eager to get her started back in dance... hoping this summer session will be possible financially for us!

I hope the coming of spring is bringing renewing power into your life!!!!

1 comment:

Summer said...

Glad to see your Little "G" is doing so well in every way!!!! Glad you're off that million dollar med Valcyte, Mason is not yet errr..... or off steroids yet errr.....but hey at least he and "G" are doing well with their Sparkly new hearts!!! :)

Hugs from Mason and Mommy

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