Hope 4 Juliette

Someone got her first running blade

Update:

Just got back from St. Luke's, where Juliette saw her PT for the first time since geting her 'setup' as I call it, yesterday.

Just gotta share, on the drive over she told me that she wants to be a "prosthetic maker." How cute is that? How AMAZING is that? That would be such a great and rewarding field, should she choose that.

So, Dave, PT, was in the pool waiting for her when we arrived. I pointed out her new brace and he was so ecstatic! Juliette wore a cute sequined skirt to match her new sequined shoes, and felt very proud to show off her new brace and skirt. He had me walk her around the pool so he could observe her gait, and right off I noticed him frowning, deep in thought. He didn't tell me right off what his concern was. Juliette was ready and raring to get in the pool, though, so he promised her she could do that for a little while before heading back up to the gym to check out her prosthetic and brace.

While she was swimming with her dad, I explained to the PT how the new setup works. He told me at that time that he noticed that her right leg was buckling or bending when she walked. He suspected that that was because she wasn't in the gel insert tightly enough. It was so funny, because I had mentioned that exact concern myself right away yesterday at Thompson's to the prosthetist, who told me that it just was supposed to loosely lie under the amputated heel area. I had my doubts, but her PT today said absolutely not, that it needs to be snug under that area.

I told Dave that I wasn't exactly thrilled about all the "stuff" she has to wear now. Long sock, followed by insert, followed by another sock to keep it in place, followed by a brace and shoe. How is that going to work in the summer? I remember speaking with the other calcanectomy patient, who told me that summer thing was the most unbearable for him. It will be interesting to see how it all works once it starts getting hot. How is she going to wear long thick socks every day when its 100 degress out? Sigh. I also realized that kids grow crazy fast, especially Juliette (who is growing out of a 5T as we speak and she just turned 3!!!) and so will need to go back to be re-molded for a new insert very often (every 6 months or so I imagine), then a new insert and brace made.

Juliette was so funny. While I was getting her dressed after the pool, she kept getting up and throwing her swimsuit in the pool. She thought it was the cutest thing. I sure thought it was annoying ;-) She was also flirting with anyone and everyone there today, blowing kisses at the other therapists who totally fell for her charm ;-) She's such a rascal!

So, after we got out of the pool and up to the gym, Dave REALLY pulled that insert all the way over her foot, so the heel prosthesis part is where her heel would be. Makes sense! And now I don't notice a gap like I did before. We crossed our fingers after putting her brace and shoe on, and to our relief she walked MUCH better with it on snugly.

The other concern, is the fact that he noticed her right leg is higher now than the left, so next week, when we go in for our follow-up appointmet at Thompson's, I am to have him shave down the heel insert.

I realize this is a first 'prototype' and there will likely be others, many others, to come throughout her life until we figure out the best setup for her.

Thanks for listening,

Lesley

Update:

FINALLY got the call yesterday from Thompson's that her device was all ready for her. I scheduled her for a fitting appointment for first thing this morning.

When we got there, the prosthetist apologized for the delay, explaining that one of the materials used to make the gel heel device had been on backorder. At any rate, it's done now.

I was surprised when he broke out this big metal brace thing, on top of the gel insert. He originally told me she wouldn't need anything like that, and would just wear the heel insert. Juliette's PT, Dave, had expressed concern that just the heel insert wouldn't provide her foot with lift and help with shearing, as she had lost her heel cord, so I imagine he had contacted Thompson's to arrange for them to provide the brace that would assist with this.

He wasn't sure if they were going to fit, so first thing first was to try them on. Juliette, unfortunately, wasn't going to put them on without a fight. A BIG one. She kicked and screamed and cried and carried on, practically turning blue in the face, as she does when she is upset. I wasn't surprised; in fact, I expected it, as she has behaved in this way each time we have been introduced to some new treatment or device for her since her accident. So I wasn't too concerned that she was going to reject it, as I knew historically that in a pretty short while, she always quickly adjusts to whatever it is that she has to do/wear. In fact, the first time I had to wrap her feet in the lymphedema wrap, she did the same thing. However, by the end of the day, after having worn them for a few hours, she had a huge meltdown when I took them off, insisting that she continue to wear them. She's so silly :-) Anyhow, she kept saying she was afraid, despite my reassurance that it was going to be OK. We just let her have a moment (or two or three or four) until the prosthetist finally just put the setup on, tantrum or no tantrum. Once the deed was done, I somehow was able to coax her out of her chair to walk a few steps out into the lobby, meltdown still in full swing, so he could determine if it fit properly. And it did. So we got the green light to wear it all out of the office, woo hoo!

How it works is like this: First, I am to put a long, thin, breathable sock over her right foot that will provide protection to her skin as well as prevent moisture from forming between her foot and the gel insert. So, unfortunately, that means that even in the summer, we can't wear the device without this sock. Which means she'll have this setup on in the heat :( Then I am to put the gel insert over the sock, followed by yet ANOTHER sock, which will keep it all in place. The brace first goes in the shoe, then I am to slip her foot into the brace/shoe combo.

Juliette had come into the office wearing some very high quality boots her aunt and uncle had bought her recently, but the prosthetist said that wearing such high boots would be difficult with the brace. So he got some Keen shoes that were donated to the office that would work better, and told us that she could wear those out. We are to give them back next week for our follow-up appointment. They were size 12, which were necessary to fit in the brace, despite the fact that she is more like a size 10.

Juliette quickly realized, I believe, that walking with this new insert and brace allowed her to walk more comfortably, and the tears quickly dissipated, replaced by joy! What really helped was when I lead her into a room adjoining the exam room that was filled with all kinds of prosthetics and braces, which Juliette seems to be quite fascinated with. She looked and looked and looked at each and every prosthetic, chattering about how pretty they are. At one point, I asked her if she liked a cool one I saw with a flowery design on it, to which she replied "No, I like mine!" Whew!! I emphasized how special she was with her new prosthetic, and how cool it was that she had one, too, now. I also reminded her that she was just like Winter, who had a prosthetic tail

Can you tell how crazy I am about her?