Thursday, March 28, 2013

Natural History Study take 7

We headed to Boston today for our semi-annual Natural History Study appointment at the Children's Hospital. It was Leah's fourth and final appointment in Boston and her third with Dr. Kauffman and his team. 

On our drive down, we took a little detour to check out the last half of the race route. The verdict on Heartbreak Hill?: Totally doable. 

I packed a little lunch for the girls and hoped to eat it in the lobby before we headed up. On our drive down, the coordinator (named Kate) called us and asked if we could push our appointment back a half hour. Perfect. 

So, with two diapers in hand for each girl, we made a pitstop in the bathroom to freshen them up. Only while Kate was getting changed, Leah thought it was a great decision to splash her hands in the toilet. So gross. So we shimmied ourselves aroudn the stroller and toilet and cleaned her flailing hands in the sink. For a long time. She thought she was hilarious. For the record: she was not.

After the bathroom fiasco, we headed to a bench in the lobby where I closed them off with benches and chairs and we enjoyed a nice, messy lunch. 

As lunch finished, I noticed a not-so-pleasant smell. Oh, Kate. Of course. So, we changed her in the bathroom. Only the smell didn't go away. Leah too? Of course. So, we changed her in the bathroom too. 

 With no diapers left, we headed upstairs for her appointment, which was flawless other than the fact that she has grown 2-3 inches and LOST 4 pounds since last fall. Yikes! We'll be working on that. We absolutely love her team and don't even have to be heartbroken about moving because this same team also travels to Chicago for the study there. Hooray for one piece of stability in the next six months!

Just as we were finishing up, coordinator Kate asked to hold little Kate. As I got Leah all dressed and ready to go I looked up to see something falling to the ground from big Kate's arms. It splattered on the floor and fear struck my heart when I realized what it was. At first glance, we thought big Kate had escaped unscathed. It wasn't to be so. Little Kate had made a mess in the worst possible way all over big Kate's shirt. I felt awful. AND, I had no more diapers with me. Luckily, we were at a children's hospital so they grabbed a few size 3 diapers for me, I cleaned up the mess on little Kate and the floor and big Kate cleaned up the mess on her shirt. We're always trying to make things exciting. 

With the appointment being pushed back and some of the other time-consuming events, we left a little later than I originally planned and hit Boston traffic big time. An hour later, we were finally out of the city and on our way home. A quick pit stop at Target and Wendy's filled our cups halfway home. We picked up Ryan from school and pulled into our parking spot at 9pm, both girls sleeping soundly.

We got them to bed and I collapsed onto the couch. 

Rett syndrome is exhausting. So are babies.

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