Hope 4 Juliette

12/06/2024

Lots of good vibes are needed today for this very brave girl who is having her right leg amputated below the knee today. For those who don’t know her story, she was in a lawnmower accident when she was 2, which resulted in bilateral partial foot amputations that have limited her mobility and cause other various issues, including lots of pain.

She is looking forward to a life with less discomfort and being able to do all the things she hasn’t been able to do with a prosthetic.

01/05/2015

BONNER SPRINGS, Kan. – A lawnmower hit a toddler on Wednesday night, and was taken to Children’s Mercy Hospital with injuries to their lower body. The incident happened at about 7 p.m. near 140th a...

08/01/2013

I'm going to be deleting the Hope 4 Juliette page pretty soon so I don't have to maintain 2 anymore. Most following me seem to be my own friends, anyway. If you'd like to continue following us, feel free to add me as a friend (Lesley Johnson). Thanks everyone for your support! Our journey is far from over, but we're making progress. Love, Lesley & Juliette

04/01/2013

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

04/01/2013

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

03/01/2013

After wating months for them, Juliette finally got her brace and heel insert, allowing her to wear shoes!

The big day was TODAY!!

31/12/2012

Happy New Year's Eve! Love Juliette & Lesley

27/12/2012

Can you tell how crazy I am about her?

27/12/2012

Update:

Greetings, people. As Juliette would say, "Merry Kiss-mas!"

Let's see, I'll start where I last left off. Not much has really changed since I last journaled. Juliette continues to go to St. Luke's twice a week for therapy. Mondays to work on her keloid scarring until we get her brace, and Fridays for pool therapy, which she LOVES! I'm guessing it could increase to 3 times a week once she gets a device, so we can work with her therapist on walking in it. Mobility-wise, she is about the same. I have noticed in past weeks, however, that she's walking on the right foot directly on the amputated heel, with her toes pointed towards the ceiling. Very bizarre, I thought to myself. I brought it up to her PT last week, and he said he had noticed as well. All he really had to say about it is that she must have discovered that it's comfortable to do so, so continues to walk that way.

We're also STILL waiting on our brace from Thompson's, unfortunately. I'm actually quite peeved as we went over a month without a word from them. We were promised that a device would be ready by the first of December! I even phoned a couple of times inquiring on the status since she was molded, only to be met with a "We'll call you when it's ready," blah, blah, blah. Well, the call never came, so I called yet again about a week and a half ago. The receptionist couldn't tell me what the delay was all about, and promised I'd get a call back from someone. I'd heard that before, to no avail. This time, though, the prosthetist actually did return my call, leaving me a message to tell me that the holdup has to do with the fact that they've been waiting on the gel that they'll be using to make her brace. Ok, if that's the case, why not pick up the phone to tell me sooner? It would have taken moments. Ugh. In the meantime, we've been continuing to go like we've been going, forced to go out without any shoes on in this weather, in her lymphedema wrap. Her Aunt Jen did get her a cheap pair of boots last week that she can kind of walk in, but like the last ones I got her (and ended up returning), the one on the right foot tends to twist around her foot as she walks as there's no heel there to anchor it. :( So we mostly avoid the boots... We're going to continue to anxiously await a referral from her prosthetist for somewhere to get some shoes.

Today, I received a call from Byram, who made Juliette two pairs of custom sewn scar/burn garments, which will doubly serve to reduce her terrible scarring as well as help with edema. You can see kinda in the picture that one has a smaller heel area. The downside to these garments is the fact that they won't provide cushioning to that right foot, as the lymphedema wrap does. The best combo would be this new scar garment with the brace. Without those wraps she limps much more, as I've said many times. So I'm not sure what I am going to do. I want the terrible scarring to be minimized, but I don't want her to be uncomfortable, either. I suppose I'll just alternate between the two until I get the brace, at which point I'll use the scar garment all the time. Her plastic surgeon actually recommended a different product, something called CICA-CARE, which is a silicon gel sheeting that you apply over the scar. However, it is REALLY expensive and not covered by insurance. An alternate product is the more common Mederma. Because Juliette's PT is more of a fan of the scar garment as opposed to the gel sheeting, I went with that. They are also used on patients who have sustained serious burns, to help minimize swelling.

I received a call a week or two ago from Juliette's plastic surgeon's office, stating that they had made a referral to a couple of Orthopedic surgeons in Seattle, but that I'm to wait for them to call me. No call yet. I'm not too eager anyway to drive over the pass in the snow so it can wait until spring.

Since I last journaled, Juliette's just been getting pumped up for Christmas, and getting girlier by the moment! Crazy, considering who her mom is ;-) This is the first year she 'gets' who Santa is, and she's just been yammiring about him and Frosty and Rudolph day in and day out. And every time she sees any Christmas lights at all, she acts like it's the most exciting thing ever and announces it to everyone! "Kissmas lights! Yaaaayyyy!" It's pretty cute. And it's pretty cool to see the magic in life again through my daughter. I took her and her doggie Winnie to see Santa at the Owl Pharmacy in ML (3$, baby, for a framed pic!), but she was utterly terrified and REFUSED to sit in his lap. Of course, she talked nonstop about him beforehand, only to get a dose of stage fright when the big moment presented itself! Ha! I also have walked her by the Santa at Riverpark Square once or twice, just so she can get more and more comfortable with Santa. She refused to sit on his lap, too, but the other night, from across the rope divider thing, whispered oh-so sweetly to him that she'd like a dolly. Awww!

As for the girly thing, it's tutu this and tutu that. This girl will not leave the house anymore without a tutu or a foofoo dress on! At present, she's most obsessed with those Princess dress-up outfits! Thankfully she got a couple for Christmas, along with a crown! And of course there has to be multiple outfit changes hourly . Lol. Luckily she has her Auntie Jen to help out in this area, as I'm pretty useless with hair and clothes. Her fairy godfather Trav certainly would be proud ;-) For Christmas, her Aunt Jen and Mike got her this vanity set, complete with a fake makeup set and jewelry and all these fake hair styling accessories, including a blow dryer that actually makes a blow-dryer sound. She loves to sit in front of the mirror, brush her hair, and say "I'm so pretty."

I'm pretty tuckered out from the past few days. My kid is one hot ticket in this town, I'll tell you. Everyone wants a piece of her. She is pretty amazing, I'll admit. She has seen her dad the past 3 days, including for Christmas during the day. On Christmas Eve, she and I went to dinner at the Olive Garden with Mike, Jen, my parents, and Jen's brother and his son. Juliette was pretty good considering how long we ended up being there, and made friends with everyone sitting around us! When dinner was over, she even went around to all of the tables near ours, telling the diners sitting at them "Merry Kiss-mas" as they "Oohed" and "Awwed" at her.

27/12/2012

Juliette just received her custom sewn scar/burn garment for her keloids. In HER colors, pink and purple!

Will try and post CaringBridge update later this evening, once Miss Juliette is in bed! See you all later

16/12/2012

Thanks so much to Medical Lake Natural Health Center! They had a fundraiser unbeknownst to me in our honor! So kind!