|A blast from the past and a bird's eye view into our future is one of the best ways to describe our two days with Abby at Gillette Children's Hospital this year! As a point of reference this trip has been known as a trip from________ in the past, so our expectations are pretty low. There has been vomit in the car from the two hour ride, and the worst doc appt to date took place in these offices. I believe we scared the sleep doctor. He kept calling his nurse in as Abby was hysterically clawing at us and everything within her reach that day. He was pleading for any way to help her, but we didn't know what to do either. We ended up "burrito" rolling her in a blanket (they gave us to take home) just to keep her from hurting everyone around us... including herself. She finally gave up and fell asleep just as the orthopedic surgeon game in to see us. Luckily he had stopped in while she was flailing like crazy, so he graciously told us to let her sleep and he'd stop back to see her when she woke up. Come on, who does that? This is the usual treatment we've come to love and expect from Gillette!|
Fast forward to this appt...
We're so accustomed to their amazing efficiency that we increased our appointments and decided to see some more specialists that we can't see here in Duluth. We were referred for our typical orthopedic surgeon yearly check-up on her hips/legs/feet/back. There's a lot of deformity going on, so we evaluate and come up with a plan each year. We also needed a couple of evaluations for large adaptive equipment and a splint. At ninety-three pounds we're in need of a bath lift because she can't get up and down by herself in the tub and she's getting too big to be lifted. We've tried the bath chair and shower, but she acted like she was being sprayed with acid :( The shower is really not an option. She really loves a bath and since she is still incontinent, she needs to soak daily to keep her skin from turning totally raw.
We've avoided the adaptive enclosed bed, choosing instead a homemade custom bed, but those days are coming to an end and we are going to have to suck it up and get one. To make a long story short... they forgot to schedule the bed eval and didn't realize it until a couple days before. They were scrambling to add it to an already full schedule, but weren't able to do so because the therapist insisted on a medical equipment vendor being present in order to do it. It's a good idea in theory, but the reality of living in Duluth (2-3 hrs away) no local vendor would deliver to our home and no vendor from our area would travel to the cites for an eval. After hours on the phone trying to find an unlikely vendor to attend the eval, deliver & set up such a large enclosed bed, I was losing my mind pleading with the clinic to just do the eval. They refused up until 6pm the night before we left. I received a message from the clinic supervisor at 8pm asking us to still come (he must've known we were seriously debating even going in the morning). We had five people/families keeping MaryAlice and Belle, a hotel booked and other appts we needed to attend despite this frustration. We had to be in Minnetonka by 10:30am, so we had to leave the house by 7am at the latest. Not sure what happened between 6pm and 6am, but true to their "amazing-ness" we showed up and everything went down smooth and natural as if there were no mess-ups at all. They did both evals together! If this wasn't great enough in itself, Abby was amazing!
High fived everyone she met...
kissed her daddy and I all day...
giggled... smiled... and was generally content and pleasant all day! That was two evals, height/weight, x-rays of her back & hips, and an appt with the orthopedic surgeon.
I gets better...
The surgeon came in and was focusing on her scoliosis because the w-ray was really crooked (see pic below), but after closer examination it looked like Abby was just sitting leaning to one side for the x-ray. He was about to leave when we had to ask about her hips (that's been our biggest concern and why we were referred to him in the first place). He had to pause and go back and forth from her x-ray from last year and this years because her hips, that appeared to lack developed sockets in addition to their displacement, were REMARKABLY BETTER! I mean... may-not-need-surgery better! He showed us the growth of bone that was actually forming a socket for the hips to go into! The nurse smiled and said (and I quote), "You guys must be going to church or something!"
We spent the evening in our hotel room watching TV while Abby played contently on the floor when she wasn't actually being a bit silly and totally sweet. She climbed onto her bed and went to sleep after eating Thai food with us (she's been picky-er lately, but not this day)! She was just awesome! It was truly a gift! It was like the Lord was showing us the possibility of who Abby could be. We've known for some time that she'd always be with us, but that thought hasn't always been a completely pleasant thought... until Thursday! Yes, I'm smiling too!
Abby woke up just before seven the next morning, played on the floor while we got ready & packed up (we used to pack when she was asleep because for some reason it made her crazy angry), and took off for day two. We got a splint to protect her arm as she's been bruising it by banging her forearm on things. I missed that fitting because we ended up needing to split up so that I could talk to the genetic doctor who was running late. Get this... the last time we saw a genetic doctor was about eleven years ago. We decided because they were such downers and they couldn't really help us, we needed to take them off our "go-to" schedule. The reality of sitting and talking about all Abby's deficits isn't exactly our idea of a good time, but in time we've realized having a more specific diagnosis could be helpful to others who may be similar to Abby. We've done many really unique things with her and thought it might be helpful to others as well. We haven't had a lot in common with typical chromosome 18 kids, so we sought to check out the new technology to discover what they might find to explain her uniqueness among similar diagnosed kids. Abby does have a mosaicism which we've used to explain her in our heads, but it didn't seem like enough. Most mosaicisms result in lesser affect rather than more severe like we were seeing. After stumbling upon a website of kids who liked kin to Abby, we were pretty sure that the diagnosis would include Pitt Hopkins.
The geneticist was easily close to if not eighty years old. Giddy would be the best way to describe her! She was so interested in hearing all about Abby. She was totally intrigued by our story! I'll save the genetic stuff for another blog, but will sum up our appointment as thoroughly enjoyable. Only sitting in a restaurant over lunch could've made it better :)
The worst part of our two days was the extra hour+ we spent in traffic on the way home :( I forgot to mention the my cute girl-buddy actually took a nap on the way down and on the way back in the car on the back seat... with me! She didn't attack me, but went to sleep in my arms! I love this girl so much! I really enjoyed her letting me be close to her like that for such an extended period of time! It's not the first time we've taken her out together... just dad and mom... but it's the first time she seemed to really like it! I've missed our one-on-one time since we've returned! I actually enjoyed her the whole time! Sure, taking care of her is a bit physically draining, along with all the doc stuff a bit emotionally/mentally taxing, but the pleasant friend was life-giving and a precious gift. It's hard not to wish for more of this, but a glimpse of her was nothing less than beautiful!
|She's looking at the camera and smiling!|
|Note the braids... away from home & seeing doctors... and cute braids!|
|I don't suppose you understand this, but I had to include it in this story|
|I guess I just love that she can find a door and light switch wherever she goes!|
|Scary spine pic|