Well, I regret that I haven't posted in a while. The last several months, beginning around March - when we realized Mielle was relapsing - have been a very dark and difficult time. The summer was hard, very very hard. Once we got through the Chicago trip, I needed some time to recuperate, catch up on my work, and just try to feel better. And guess what? I'm feeling better!
I talked about the test results, etc from Chicago, but not about the trip itself. Bless Stephanie Cebulski for coming with us; I don't know what we would've done without her. We arrived after an uneventful flight and checked into the glamorous Days Inn. It was fine, but the next day we were able to move to the Ronald McDonald House, which was awesome. They have so many resources available to support families - well-stocked kitchen, play rooms, little baskets of freebie toys everywhere, free passes to some of the Chicago attractions, free shuttle to/from the hospital. It was amazing for us, who were there just a few days; it would be truly invaluable for a family that has to stay for extended periods of time.
Anyhow, the appointment was a long day, as we knew it would be. The highlight was meeting the famous (well, famous among JDM families!) Dr. Pachman, who was very warm and down-to-earth. The lowlight was the most horrific blood draw experience we've ever had. Without going into too much detail, it involved 17 vials to be filled, a technician who allowed the needle to SLIP OUT halfway through, which resulted in a total of 4 pokes, and 45 minutes of Mielle's non-stop screaming. Horrible.
So picture this - we get through all that, and then the next day is our fun day, our butterfly day. And I get a call from the dr. office saying that a mistake was made; they didn't order all the tests that they need. We need to go in FOR ANOTHER BLOOD DRAW. I cried at the thought.
I decided to have our fun day, and do the blood draw the following morning before heading to the airport. I just couldn't take Mielle back there yet. So, we headed to the butterfly garden and it was fabulous! Really wonderful. Mielle had a great time taking pictures and spotting her favorites, the blue morphos. She looks like she's having fun, doesn't she?? ; )
We were there at 2 pm when the release the new adults into the garden, and it was really cool! They gave a little talk and then released a bunch of butterflies.
They are attracted to bright colors, and one landed right on top of Mielle's purple hat.
I was wearing an orange skirt, and one landed on my skirt and then started walking up toward my head. Just kept on coming until the docent came and removed it. It was cool to see a butterfly face so close up, but I admit that once it started getting close to my own face, it was freaking me out a little!
We stopped for a huge and heavy pasta lunch on the way back to Ronald McDonald House (mmm, Chicago cuisine!) and on the way we stopped in this funny little store called "Pocket Puppies", or something like that. It's a fancy schmancy dog-accessory store, but they actually sell puppies as well. We got to hang out with the pups a little bit; Mielle bonded in a big way with a teeny little chihuahua puppy, 9 weeks old. It was so tiny and sweet; she was in heaven, especially over it's naked little belly.
So we had a good time. That evening, Nancy and Kristin came to visit us from Milwaukee. We all hung out a little at Ronald McDonald House, then Mielle stayed with Steph for bedtime and I headed out with the ladies for a tea and catching up. It was sooooo wonderful to see those gals. Ladies, thank you so much for making that drive, to have a few hours with you.
Meanwhile, Mielle and Steph did mud masks before bed:
The next day, we had the very unpleasant task of going back for another blood draw. It was awful, let's just leave it at that. And it took a really long time, so we were a little rushed getting to the airport after that, but it all worked out. A highlight for Mielle was her trip to the "toy room" at Ronald McDonald House - a room stacked floor to ceiling with nothing but toys, and each kid gets to pick one out during a stay there. We went right before leaving for the airport; it's probably a good thing, so that Mielle had a deadline for choosing, or else we probably would have been there all day trying to decide!
Even with all the medical drama, I think Mielle had fun and she asks me when we can go to Chicago and stay longer. She will be going in December - Lenny is going to take her this time - and we'll see if she likes it as much in the winter!