Great news at clinic today, Lydia is officially tapering off of her main GVHD (graft verses host disease) medication.  She is on schedule for getting off of these drugs!!!  It is a long taper schedule.  She will not be completely off until March.  The great thing about starting this taper is that she doesn’t have to have weekly blood draws.  The particular medication that is being tapered can be toxic to the body.  Her levels have steadily been within the range that they should be within, and now that she is getting less…well, it doesn’t have to be checked as regularly! 

We are going in next week, but not until the afternoon.  That means we can sneak out of the house right after my boys go down for there afternoon naps, instead of missing the whole day with them.  I am just beside myself…no GVHD, we got to go to the lake, and now tapering this drug!

Plus this particular drug is the one that causes her to be on so many of her other meds (blood pressure, magnesium, etc).  It will be such a help to get all of these levels normalized.  Baby steps, I know.

Speaking of baby steps, in physical therapy we are working on getting her on to her hands and knees.  It is coming slowly, but I am seeing progress.  She is perfectly content sitting upright and reaching.  Now that she is done with the major part of her medical therapy, I really want her to want to move around and be able to play well with her brothers.

I also wanted to update you, and let you know that she is rarely nauseous.  She has started taking bites from a spoon again, but she will NOT drink from a cup, sippy cup, or a bottle.  This is SO frustrating for me.  I pray that she will have the will to drink and eat soon too.  I would love to get rid of the feeding tube.  I can definately deal with it, but I think it would be so good for her to be able to eat.

Also on the horizon is a trip to Nashville for a consultation/eye surgery with a pediatric opthamologist.  This particular doctor was highly referred.  He has agreed to see her in clinic on a Friday and operate on the following Monday if it looks like she still needs surgery.  So far it seems like she has perfect vision, but her eye muscles were damaged, making her eyes cross much of the time.  I am praying that this can easily be corrected.  Actually, I am praying that she will start getting stronger and be able to control her eye movement better.

So that’s it for today.  Thanks for your prayers!

Liz

Advertisements