Wednesday, April 22, 2009

Mostly Good

Phew! Doctor visit over, blood draw OVER!

I'm exhausted but happy and relieved that there were no earth-shattering revelations at Mielle's appointment today. Her specialist here was pleased that her strength has improved in most areas, her skin looks good, and her spirits are better. (During our first visit to see this doctor in August, Mielle would do little more than grunt or growl in response to a question from a medical professional. She literally thrashed around on the table, ripping the paper on top to shreds, making messes with all the games etc. we brought to entertain her. She was basically a wild animal, and the room was a disaster area by the time we finished - thank you, prednisone! So in the area of "good spirits", there was nowhere to go but up...)

One little dark spot is that the doctor thought she could see small cataracts in Mielle's eyes. This is a side effect of the prednisone. She was checked back in September and was all clear. We need to have her seen by an opthamologist again to confirm or deny our specialist's suspicions. She did say that the cataracts "should" reverse once she's off the prednisone, but it was a pretty depressing moment in an otherwise encouraging visit.

Actually, something really wonderful happened today. Mielle still has a terrible time with blood draws. It usually ends with her screaming her head off while her arm is held down and it is ridiculously traumatic for everyone. We have tried a lot of things, and none of them have helped - until this visit.

A "Child Life Specialist" is someone who comes and explains procedures in a way kids can understand, maybe models the procedure on a doll, suggests coping mechanisms, etc. etc. We've often had one but, honestly, they've never been able to get through to my girl and really make a difference. She'd go through everything with them and gladly accept the stuffed animal and other little trinkets offered, but when the time came for the actual draw, we were back to square one; and a that point, (once the screaming begins) ain't nobody gonna make things better. So I think I can be forgiven for my skepticism when we were told that a Child Life Specialist was on hand.

Her name was Kathleen and she sat down to talk to Mielle about the draw. She asked about what had happened with blood draws in the past, and what might make it better. She and Mielle actually made a list of things to do that might help:

Then we headed to the "draw" room. There was a room set up just down the hall, with a phlebotomist waiting for us. (This meant that we didn't have to go to the regular lab down in the basement, register, wait, and have all that extra time to get even more nervous.) I was still skeptical that this time would be any better, but despite some initial resistance, Mielle handled it much better than I could have imagined - and it was definitely a smaller number of vials required than the last time I took her to Chicago (that was our very first visit and it was something like 30 vials). What a relief... I didn't realize how much anxiety I had about the blood draw until it was over!

Here are some other highlights of the day:

Mielle took this one of Gundy.

A snuggle while waiting...

Getting assessed by the physical and occupational therapists. Mielle's strength has improved, all except her core and abdominals. (We need to work on those).

Her unicorn, a gift from Uni and her Ukelele (Mielle's special rockstar friend) offered some comfort. Thanks, Uni!!!

Taking microscopic photos of the capillaries around her cuticles. I think that Chicago Children's is the only place that has one (and CURE JM helped fund it!!). It provides another clue as to the actual state of the disease in the body. (Bloodwork alone is often NOT a good indicator of disease activity, so we have to look at an array of things to try and asses what's happening.)

So, all in all, we have to be happy with where things are. It's still a long road ahead, but things are so much better than they were a year ago, six months ago, three months ago. We're grateful.


Nicole said...

Thanks for the update, Suzy! How much do we love love love the photo of her in the pool? Wow. Huge difference.

Nicole said...

And mostly good ain't half bad. (We'll cross our fingers here though too...!)