The boot

    I had already started to plan how I would write tonight's post. Telling you about Amaya's appointment today with the orthotist, her new boot, show you a picture of it, tell you what she thought of it, etc. But instead I have to explain why we didn't get the boot. We went to our appointment as planned, we met the orthotist. I recognized him from a few years back when we went to him to get a new lift for Amaya's shoes. She must have been about three years old but she recognized him. She has a great memory. Only makes me wonder what she'll remember from all this. Anyways, let me get back to the boot. At the appointment the orthotist asked who the boot was for because both girls were walking fine. The boot is usually used on people when they've fractured their ankle or had some kind of injury. I told him it was for Amaya. I told him why she needed it. He asked how she got the bedsore and when she got it. He asked about her surgery, why she had a fixator on, was impressed that she gained 3.1 inches of new bone. He was concerned that the bedsore hasn't healed in ten months. Me too. He measured her foot to size it then went in the back to get one. But, they didn't have any in stock. Ugh! I thought we were coming in to "get fitted" in the boot. Why wouldn't they make sure the have a boot in stock?! I was a bit surprised, very frustrated, but felt calm at the same time. He said they would have to order one, but since it has to come from Texas (because no one stocks them locally) it would take four to five days before we got it. He showed us one that was toddler size. It's pretty sturdy so I don't doubt that she will be walking in it just fine, but I worry how comfortable it will be to sleep in. I'll mention that to ht wound doctor on Thursday. 

   We left empty handed then headed to physical therapy. We had some extra time so I let the girls play in the playground before our appointment. As we were walking one of the receptionist was walking behind us. She said "Amaya, you're walking so fast, I can't catch up."I thanked her then told her that she was walking without her walker now. She said, "its exciting!' I smiled and thought, "yes it is." Its amazing where we were ten months ago, and where we are now. 

   As Amaya walked over to the playground I kept telling her to point her toes straight. I felt like I was nagging her. But Melissa said to keep doing, so I will. Her left foot was turned in to much it looked like it was perpendicular to her right foot. As she walked her left leg looked a bit bowed to me. Maybe it was her skinny jeans, or the ways he had her toes pointed, but it definitely looked very bowed. I'll add it to my list of things to mention to Dr. Nelson next week. 

     Today we got our insurance statement from the removal surgery Amaya had in October. In case you're wondering it costs about $32,000 to remove a fixator and insert a rush rod. Crazy, huh? I'm very grateful for our insurance. I spoke with Marilou today and we compared notes on all the referrals, appointments, etc. She's ben so helpful. I was finally able to schedule Amaya's appointment with the opthamolagist and with the plastic surgeon. When I scheduled the one with the plastic surgeon the scheduler said she scheduled Amaya to see a doctor who specializes with fat issues (she said a fancier term but I don't recall it). We meet with him or her in two weeks so hopefully we can get answers about what to do for the heel. By that appointment we would have seen the wound doctor and Dr. Nelson so I'm curious what the consensus would be among them on how to treat the heel. 

   When I was putting Amaya to bed tonight she said both her feet hurt, and her left knee. We've been able to take care of it with massage and no pain medication, but the foot pain just isn't going away. We're not too sure what's causing it in both feet. Just one more thing I'm worrying about, and trying not to worry about.  

   On another note we have four PFFD friends who had surgery today. Rory, Jackson, Christian, and Allison. Keep them in your thoughts and prayers.  I wish them all well, good sleep, speedy recoveries, and that they get to go home soon. 

When I picked up Amaya she was at recess. She showed me her jumping. She said its the first time she's jumped on a jump-rope. She was very excited! 

Here's a view of her legs. See how the left one is just a little cured, or bowed? Not a lot, but not as straight as the right one? 

The girls cuddling on the couch in the lobby. Until Lidie bit Amaya's finger "on accident." I still can't figure out why Amaya put her finger in her mouth in the first place. Ay yay yay. 

Melissa started by massaging Amaya's knees. Last night Amaya was talking in her sleep. She said, "both my knees hurt." She said she remembers feeling pain. Then Melissa had her lift her leg up. She was doing good so Melissa had her hold it up in a stretch for five seconds.

Then Melissa had her lift her leg while on her tummy. 

Melissa had her hold her leg up after each lift. She was only able to hold it for two seconds.  

Then she had her do her side leg stretches. Amaya did better with these today. Melissa didn't have to hold her leg up for her.

Then she had her stand on her left leg. She was very wobbly today. She was only able to stand for six seconds and that was with great effort. 

All the while Lidie was busy playing with the ball pit, and swing.  

After some stretches of her hip muscles Melissa had her do some cones work. She had to lunge to pick up a cone then stand up while leaning her head forward enough to touch Melissa's hand with her forehead. 

Then she stepped over them side ways. On the last one she was kind of wobbly.

Then we went out in the hall for some high knees. They had walked down the hall and were on their way back. You can see that those last few feet are hard for Amaya to do. She can do stuff, but after awhile she can't do it anymore. She doesn't have the stamina. Melissa was happy to hear that the girls did this several times over the weekend. This video makes me tear up. All she wants is to be able to walk and run. 

Before heading back into the gym Amaya squatted against the wall. 

Then she did some balance work. 

I caught Lidie admiring herself in the mirror. 

     Then it was time for bends. Josh and Amaya had talked about trying to get to 139 by the end of the week. Amaya really wants to hit that 135 mark. But we tell her it takes time. I can tell it hurts her and then she's in pain later on. Since it was the first day back after a weekend we told her we'd see what she could do. Her starting number was 102. That's pretty good for having three days off. We've been stretching the knee nightly and Melissa said it shows. Amaya does such a great job with homework. Not only schoolwork but therapy homework as well. She made steady jumps to 109, 111,115, 119. Then Melissa asked if she could try for 120. Amaya said sure then did a big stretch and got to 122! But her pain showed in her face. I hate seeing her in pain. She held her tears in and was glad when the stretch was over.