Hi all! Wow, it's been a whirlwind since our second trip to Shriners. The trips are hard on our little Lightening girl which lead right into Christmas.
Here is a synopsis of her upper evaluation:
This trip we took one of our older kids...Fashion Faith. She was so excited to tag along. She is so interested in all things related to adoptions, babies and of course her littlest sister. We left early in the morning and arrived just in the nick of time.
Here we go:
This day went much much smoother than the first...
This is the upper limb doctor we were assigned. She was very nice and came in (again after a Residency doc took some initial info and back story). Little girlie did great! Hardly a whimper.
We asked to see her X-rays this time. SO COOL! Last year C-dub read about Marie Currie and learned all about the discovery of radium. Amazing to see it in action. Great news! Both of her lower arm bones are there and the correct length and such. Awesome! They explained how sometimes in kids this young they can't quite see all of the bones that are forming or have yet to form. There was a bit of fogginess on her left "hand" area, what we affectionately call her ANH (arm no hand) and where her missing radias' are (fingers). I feel like the tips of her missing fingers have grown some since we got her. We will see I guess :) At this point there is nothing they will do. She has such good use of her hand with fingers and uses her ANH as an assist when she needs it. Their plan for her upper is to continue to check in and see what she wants to do.
"If she wants to ride her bike or play violin we'll make her something so she can do that."
Two sisters...love!
waiting, waiting...
After her upper evaluation we had an appointment to get fitted for her "new feet". Total freak out and thinking they are going to stick her with something sharp, hence the tears! She did better than I thought. This is the Orthotist. He was very nice and also said it went better than he expiated. I thought she was going to kick him in the face.
Here he is just looking at her feet and legs. She's not a fan. Great action shots by Daddy-O.
He looked at her little baby toes and wondered if the orthotic he was going to make her would rub. That would NOT be good! I don't even want to think about the possibility of surgery at this point. She uses those little toes for so much balance. And since it's the only ones she has it would be super sad to lose them. But we want what is best for her long term so we will wait and see.
Now on to casting her feet and lower legs to get a mold. Really neat process. He put a little sock on her foot/leg to keep the plaster of paris off her skin, then a strip of what a zipper is connected to (kind of thick nylon), then a cord, then a few layers of plaster that is quick drying.
He continues to press on it and mold it to her foot as it dries. He said that if he continues to rub it it dries faster and that is good in this situation. This particular Orthotist has worked at Shriners for about 16 years. He will retire this coming May.
Once that's done he proceeds to cut along the cord that goes down the front of her shin to her toe with an open blade.
And there you have it...little Lightening Baby boots.
...and the smiles have returned! Yay! We made it through another appointment and to the play area.
I am hoping that after enough appointments of her not being "hurt" our little one will come to enjoy the visits.
When we were with the Orthotist we talked about what size her "new feet" would be once he had finished. His response,"What size do you want her feet to be?" We brought shoes that were size 3, 4 and 5. We chose size 5 so she can grow into them. I don't imagine we will get another pair of these "new feet" within a year.
Her new size 5 kicks!
After our appointments and a few rounds in the play area we headed to lunch. We let our big girl pick from the choices around IKEA. She had never been to IKEA before, and being the design-always-on-her-mind that she is we thought it would be a treat for her. It's only about 10 minutes from Shriners. Little sis was out in the car on the way to lunch and slept through.
Big girl enjoyed a hamburger and fries and Five Guys.
So fun!
She named the rooms for the different people in our family. :)
Ended the day with soft-serve and it was time to head home.
First bites and it was "more, more more!"
With the precision it requires to make the special little booties for our girl they will not be ready until late February-early March. There are two kids ahead of her and very time-consuming to make...and she needs two.
Stay tuned.
We're glad to have some longer time between visits!
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