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.

breathe and run

I was exchanging emails this evening with Suzanne Edison, whose daughter Flora also has JM. We met at the event in Carlsbad - I vividly remember seeing Suzanne and Flora cheering on Mamajoggers at, I don't know, mile 8-ish of the race. A part of the course where there weren't many spectators, and no other Cure JM folks. They were like a breath of fresh air at that moment when the 5 remaining miles of the race seemed waaaay too long.

Anyhow, I mentioned to her that despite the fact that everything seems to be going well for Mielle, the upcoming Chicago visit has me feeling pretty anxious. Her reply took my breath away, because it so precisely captured the muddle of feelings that I'm experiencing right at this very moment:

"Of course. It is so damn hard. The not knowing, the anticipation, the hope, the not wanting to go into despair, not wanting to be TOO hopeful either because falling off the "Hope Wagon" is awful. It is hard to find any place to rest. I think the Buddhists want us to find that middle ground where we hold suffering and joy as equal. But I am not very evolved.

breathe and run, I guess that's the best we can do for now."

Wow. Wow. She really, really nailed it. It certainly is hard to find any place to rest in all this. I am afraid of being too hopeful, and simultaneously afraid of falling into despair. Clearly, I am also not very evolved...

But I continue to breathe and run, breathe and run, breathe and run....

Chi-Town, again

Please check out this blog post from a JDM dad:

http://blogonkevin.blogspot.com/2009/04/milestones.html

Really, really amazing. Made me cry (a lot) and does a great job of expressing some of the emotions inherent to dealing with this disease.

I'm preparing to take Mielle to another appointment in Chicago this week. I really can't believe it's been over 4 months already since the last trip. The rapid passage of time is beginning to freak me out! Mielle is continuing to do well, as far as I can tell (the pinkness I was noticing a while back didn't seem to amount to anything, thank goodness), and her Stanford doc is really pleased with her progress. So I'm hopeful that the news will be good this week, but... it's nerve-wracking nonetheless.

After successfully reducing her methotrexate dose so that it is more in line with her current weight (she has lost a lot of her steroid weight but the dose of the mtx had never been adjusted for that), we resumed tapering her prednisone. She's now on 3 mg/day (as opposed to 30 mg/day at the beginning). I am so grateful and relieved to have her on a lower dose of this drug; she still suffers some side effects, but it is nothing compared to how unbearable things were, for her and for us, at the higher dose. My understanding is that if all continues to go well, we will keep on tapering that drug until she is OFF it. I suppose I will find out more about that possibility at the appointment this week. Fingers and toes crossed. It would be quite a milestone to have her finally off the steroid, after more than 18 months.

Lucien is such a little walker now; he seems to consider it his job to walk laps around and around the house (with a big happy grin) from morning til night, picking things up and putting them down in random places as he goes. Although he is still significantly delayed in all areas of his development, he is progressing in other areas, too - he has a lot more words now, and mimics us all the time. (He recently learned "hungry" and he really likes that word a lot!) We recently added a new therapy to his repetoire - Occupational Therapy, which focuses on fine motor skills (stuff he does with his hands). It keeps us hopping to maintain his schedule of services, but we know that all the intervention he's receiving is critical to the progress that we've seen, and we're so grateful that it is available to him.

Mr. Delightful continues to explore his emerging stinky-two-year-old side, but he does it in such an adorable and endearing way that truly, it just makes him that much more delightful. Except when he looks deeply into my eyes, grabs a handful of my hair, and tugs HARD while simultaneously telling me "NO!". That is actually really, really annoying. Still, I'm already thinking about how much I'll miss him when we are in Chicago.

On the bright side, as far as our trip goes, I'm going to have the chance to see some old, dear friends - Nancy Poozy, Kristin, and Amy. Amy is flying to Chicago to meet us on Wednesday, after M's appointment, and we'll have until Saturday to play! Nancy and Kristin are driving down from Milwaukee on Thursday to spend the day with us. I am very, very excited to see them!

Wish us luck at our appointment.

Family visit

Having fun with the fam. Nice to see all the kids hanging out! The big ones are so sweet with Lucien. He's just trucking all over the place, making messes everywhere he goes. Mielle's having fun, although having lots of people around all the time makes her a little... uh, edgy. And the kids were both up til past 11 tonight due to jet lag. Ugh.

Mielle has been looking a little pink to me lately, so I'm keeping a sharp eye on it but hoping it's nothing. (Pink could possibly equal inflammation, which is bad, bad, bad.) But overall, all is well. Pics soon!