Monday, September 23, 2013

Moving Targets - BMT +27

Today was decidedly better. 

It didn't start out that way. Poor itchy boy declared that it was going to be a "terrible day" and he was going to spend it all in bed, sans clothing, itching. 

Dear Steroids, 
You make my kiddo crazy!
Go away.


Then finally, finally....a few anti-itch meds later...."hey, this day isn't actually so bad, mom!"

And all was well again. 
(His steroid dose is actually being weaned now that it has helped with the rash.)

Yesterday he ate four items:
A 100-calorie package of Oreo crisps
A 1oz bag of pirate booty
A small yogurt smoothie (3oz)
A pear

Today the nutritionist and I laid into him for some goals. And he agreed to eat all four of those items again today -- TWICE. And even better, when asked about his eating by another staff member, he ticked them off on his fingers and told her the plan -- like he owned it. Awesome. 

I wouldn't call it a high-calorie diet but it is so much better than nothing. 

My favorite part of the day was when he agreed to play video games in the common area. It's nice to see that he was willing to be out of his room and back to his usual social self again. 

So the plan is to revisit the immune suppressant drugs now that this GVHD seems under control. Daily they pull a "level" of the amount of the drug in his system so they can maintain a certain amount. That is, of course, the trick with moving from iv to oral. Now that he's back on iv his level was perfect. But it will probably be a tad too high tomorrow. The doctor and nurse practitioner each gave their prediction for his number and of course, I listened to their predictions and then chose 18 for my totally-uneducated guess. We will see tomorrow.... (10 is goal, by the way.) We need some consistent levels before we move back to oral and out the's a moving target, to be sure. 

So we keep plugging away at it with plans on the horizon....thanks for all your constant love and support. We couldn't do it without all of you. 

I type this from RonMac, where I came after a dinner time swap with Michael. I thought you'd all like to see tonight's music therapy session:

You will notice that Solly's idea of music therapy is playdough!!

Tomorrow is another day....

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