Baby it’s cold outside! 
Today were getting a new brace, and Amy is having a good day as far as pain is concerned. I’m nervous about what’s going to happen, but she’s excited to get a new brace and new shoes today! (Good Lord! Shoe shopping. ?) We have no idea what the brace is going to look like, or if it will help with her pain. Prayers are appreciated, it makes me sad that her mobility is so limited right now.
Update: We arrived early at 9:00am (our appt was at 9:15) and were asked if we wanted to be seen early. Turns out her appointment was actually at 10:30. How did I make that mistake? At any rate, Carly was really cool about it, and saw us early.
Amy was super excited to see that her brace had stars all over it, and the “crazy” padding she picked out.
We had a couple little problems. The front shell was way too short, and the apex of her bow was partially exposed. (That’s the part where the bow is most extreme.) Leaving that unchecked is a BIG no-no. However, Carly figured out that we could lower the shell, leaving the top (which doesn’t need as much protection) exposed instead. Then she set about trimming the footplate and the straps.
Once all that was done, we decided to try walking for the first time that day. In her old brace, she wasn’t able to manage a single step this morning.
Since that went well, we tried running!
After we took these, I noticed that it was digging into the inside of her knee pretty badly. So she flared that out, and it looked about perfect!
So, here we are, Brace #9!
I’m super happy that they were able to apply the design to the front shell, they don’t always do.
Amy and I are both digging the crazy padding. The two piece brace looks pretty much to be the exact same design as last time. You can see that the front shell is pretty short, but you don’t really notice it when the brace is completely on.
From the side, you can see the same build-up on the foot as before elevating her onto her toes. But I can’t get over how PRETTY the pattern is! It’s really very striking!
Again, her foot is cocked to the side, using a wedge, as that is how her foot seems to be comfortable.
Here you can see here how we lowered the front shell. It leaves the sides pretty high, but I don’t think that will do any harm, just looks a little different. The top velcro is also WAY wider. hey, more area to cover. I’m a fan!
Leaving Hangar, we headed to the mall to find shoes. We were determined to give Billy Shoes a try, but the nearest store that carried them was an hour and a half away. Great… Before I made that drive though, I called, to ensure that they had some in stock. They didn’t. Apparently, they don’t carry them in-store. But the manager who answered my call said he would be happy to order any style they carried, and I could get her feet measured at any local shoe store and call the order in. PERFECT! But it would take a few days to come in. Boo. Now what? Well, first thing is first.
We headed home to go to our regular mall, and Amy stood in awe of the Christmas tree. (tunnel?)
At the mall, we headed straight to Payless Shoes. She said right away that she wanted “zipper shoes” and we measured her feet. With the brace, she was measuring at a 9.5 on the left, and a 10.5 on her good leg. She was very insistent that she wanted new shoes now, so I allowed her to lead me to the shoes, and we dutifully tried on many pairs of shoes she fell in love with. The only one she could fit on her special leg was 3 sizes too large, and the velcro didn’t really close.
“I can’t get anything!” she cried, and collapsed broken-heartedly crying into my lap. Man, I have never been a master of my emotions, but she makes it hard to not tug on my heart-strings. She left dejected, but, she chose to walk… so that was at least positive.
Trying to perk her up, we headed to see Santa. Neither Amy nor her brother wanted to sit on his lap, but they did want to talk to him. Amy’s brother was much braver, having seen Santa the other day. He ran up and wanted a hug, which Santa obliged. Amy was nervous, so he tried engaging her in conversation, and his elf asked me about her leg. I gave her my standard answer.
- She was born with it,
- We’re trying to make it better.
- 50% end up with a prosthetic.
- We’re hoping she’d be one of the lucky ones.
- She just got her new brace today, and started walking again.
Amy finally got brave and shook his hand wordlessly. “And what would you like Santa to bring you for Christmas?” he asked.
“Can I have play-doh?” she asked. Santa chuckled at her and said if it was okay with Mommy, he’d see what he could do.
Santa gave Amy a high five, her good mood restored. We headed back to the car, where I made a ton of phone calls. After contacting every local pharmacy, one medical supply company, Hangar in Stockton, Kaiser orthopedics and then their pharmacy, and her old orthopedist she hadn’t seen in 3 years, I found the least expensive option was to buy a cast shoe from the orthopedist’s office for $20. We arrived, were called back right away, and a nurse brought a couple shoes for her to try on. The first one looked like it would be a perfect fit.
Then she said that they really had no idea how to code for just the shoe, so to consider it a gift in celebration that she was doing better. Awww.
Cast shoe on, she’s finally free to move around again outside. She took full advantage, running in circles around me, shouting about how she was a “I’m a dancing butterfly.” It was adorable.
Back at home, we got her new Billy shoes ordered. We bought two pairs, size 10, and size 11 at a cost of $103 for both pairs. They should arrive at the store in 3-5 business days. Once they arrive, we’ll go to the store to fit them, and return the odd shoes for a refund of one “pair.” I’m excited to see how they work! I’m also very hopeful that these shoes will enable her to put on her shoes independently.
After being home for about 20 minutes, she whipped off her brace again. But on the positive side, an hour later she put it back on and went to play outside. Since then, she’s been wearing it. BIG POSITIVE!
There is no doubt now. The brace was definitely a big part of her problem. Now that issue is solved. How much longer before she is back to her old self? Time will tell. I’m very much looking forward to how tomorrow morning will go. Will she walk???
Tomorrow is a big day, Amy’s 504 meeting at school. Hopefully all will go well. Please pray for my baby.
