AFOs and Being Mobile

  This is an extra old post, but I wanted to have more information and photos available before writing about this topic:
   Emma's orthopedic doctor wrote a script for Emma to get AFOs made. That stands for Ankle Foot Orthosis. Basically ankle brace "shoes" so she could practice standing. I was surprised to hear him tell us that standing is all about weight in the ankles and not in the knees. I made the appointment for three weeks later (October 23rd) since we have to get everything done in one day so Michael can work as much as possible when I'm not working, and that was the only day we both had off. Michael had his own appointment in the morning and then later he took our dog, Sasha, to get her annual follow-up shots at the vet. That was also the day that I had to wake up early to drop off a paper for the dietician at the Gastro office for Emma's WIC order (which we no longer qualify for because we're "too rich", according to the government).
    Anyway, so the lady basically wrapped Emma's feet and up to below her knee area. She was surprised to see how Emma can bend her leg up at the knee and said she might later need AFOs that go up to her thighs. Modernized Forrest Gump braces, as I call them. But with those she wouldn't be able to bend her leg at all, and for now she needs to learn to go from a sitting position to standing, which is what Physical Therapy and Occupational Therapy have been working on with her a bit.

   The casts had to be shipped out to California where they are made, but we were given a bunch of swatches to pick which design we wanted the plastic part of the "shoe" to be (light pink with purple hearts), the color of the straps to be (purple) and the color of the top of the strap (Michael picked purple with green dots).
   It was crazy to learn how expensive these little casts and finished shoes were: at least 5x more than we would have guessed and that's with us over estimating! The bill had to be paid out of pocket because October is when my insurance company's fiscal year starts over. Luckily, they said we only had to pay half at that appointment, because the total was more than our credit limit! The other half was paid at the second appointment four weeks later. I think the total was even more than our deductible, because the next month we ended up getting a $300 refund check for overpaying.
    Here is Emma in November, trying the finished AFOs on for the first time:

   Because Emma's feet are so small (3 1/2 inches from her heel to the top of her big toe, and the shoes are 5 inches- I just measured both), the ends of the bottom part needed to be cut. So they were at least 6 inches before being trimmed down to a better size. You can see the lady marking them above, and I was glad she had the heavy duty scissors in her office to cut them. But even in the office Emma was able to slip out of them if she kicked her legs enough. We made a video of some walking practice that night. I had to hold her knees though because when she stands, her knee joints (again, she doesn't have knee caps) actually bend out to the sides.

   We went back for a check-up in December because the lady wanted to know how well Emma was keeping them on, and when we told her she was still able to kick them off easily, even with thick socks, she sent them back to be made even tighter. The company in California said they would just make new ones instead of adjusting the original ones. Thank goodness we didn't have to pay for the second pair. 

   We got the updated AFOs on January 7th, and in order to make them tighter, the company cut two slits in each one so the straps could actually go over the foam right on top of her foot, instead of going over the whole plastic shoe part. The lady told us, "Honestly, they might not even fit her properly for another year. Her foot is just so small." I feel like company that makes these braces have never made them for such tiny Meier-Gorlin feet before. 

Here is a close up of the second/ adjusted braces:

    You can see in the third close-up photo where the plastic is cut for the strap to go through over where the top of her foot would be, just above the grommet. Her toes barely even come out past the part that folds over her foot, but cutting it shorter wouldn't affect how easily she can slip her foot out. They are pretty hard to pull the plastic open and push her wiggly foot in. Usually the therapists and I work together for Emma to be able to wear them. 

   Here is a cute picture of Emma getting her spine X-ray done, back at the end of September. I think it feels straighter than it used to, but the doctor told us at one point that scoliosis is common in Little People. Back in Michigan, over two years ago now, Dr. Green (or maybe it was Dr. Hannibal, the geneticist) mentioned about how some Little People require rib extenders being put into their body, but there is no current talk about Emma needing those at this time. She is still growing slowly, yet proportionally, as people with Primordial Dwarfism do. The rib extenders made me think about when I used to have braces and my mom had to use a tiny wrench to turn a little piece in my mouth once a week, to slowly pull my teeth together. It hurt so bad and I always cried that night. Rib extenders would be just the opposite, slowly pushing the ribs apart, to extend the torso and make more room for the lungs to grow.

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   Emma's AFOs being used during therapy. Her Physical Therapist, Trish, does the most with the AFOs and will have her sit with her knees bent for about half of the session (15 minutes of sitting for a 30 minute session) and then she will pull Emma up to stand on her own. It was funny last week to see Emma sticking her butt out, as if to say, "Hey, let me sit down again."

   ^^ She looks so big and tall when standing. She's about 26 inches now, and currently weighs 18 pounds. Also, practicing her reaction time with side-to-side support as well (below).

  Sometimes she does cry though, because she doesn't like having them on her feet. She doesn't even like wearing socks and always pulls them off. This is a bad thing for us at night because (as you can see in the next photo below) we need her to wear the long sock to keep her foot probe on. If she doesn't wear the sock and the Posey (the piece that is tight around her ankle), then she pulls the whole thing off her foot and her PulseOx alarm will continue to beep with the words "Sensor Off" lit up until we put it back on correctly so it can read the signal and heartbeat well.

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   While we were in Birmingham in mid-December, one night during dinner, I was freaking out to Michael's parents because I had Emma laying down on the floor in the living room, but when I checked on her a few minutes later, she was sitting up! I looked at his mom with wide eyes. "Did she do that herself?! Oh my gosh! She's never done that before!!" His mom was sad to inform me that she had put Emma in that sitting position. At this point in her progress, Emma was able to push herself into a sitting position if she had something (like her trach table) to use to push against, but not just from the floor.
   However, just two weeks later, on January 1st, Emma was determined to make "sitting up on her own" her 2020 New Year's resolution and had it accomplished before Noon!! I had been letting Emma sprint (breathing with just the trach, not hooked up to the ventilator) and scoot herself around the hardwood floor. When I looked over, I saw her push herself halfway with both arms (which she had been doing since August), but then she raised one arm out (usually her right arm) and lean her head back, both for balance, and then she was sitting up. Ahhhhh!!! Such a huge milestone!!! I think maybe she did it one more time after that, but the next day I got a video of it and posted that on Facebook.

^^ The infamous photo from January 1st, seconds after she sat up for the first time! 

   Two weeks later she was doing it several times in a row and now it's just old news -haha- but still very exciting that we are at this point. She even started sitting up in her crib, which takes more work since the crib mattress is squishy, so she has to use more ab strength to not fall forward. The other night I got her to sit up a few times so I could make a sequence photo collage of it.
  1. Starting on her back she rolls over.
  2. While on her stomach she swings each leg so it is facing forward by her head (leaning down).
  3. Gets her arms into push up position.
  4. Now she has learned to swing her arm back for more momentum, instead of just raising her arm.
  5. Lifting her head up and back at the same time to balance her body into a sitting position!

 ^^ Strange how her leg looks broken there, but that's just how they are (Genu Recurvatum).
in December, Emma also figured out how to "crawl". I refer to it as a "creepy crawl" because when she does it, it reminds me of a huge spider or something from the Exorcist, but in a cute way. She taught herself how to do that on December 12th. She does it while on her back, with her legs bent backwards, pushing her toes into the floor, she slides her body a few inches with each push, in the direction that her butt is pointing. The photos below kind of give an idea, but she doesn't raise her butt as high as that one picture. Sometimes she can push herself hard enough that she even scoots on the rug or carpet.

  She also has a habit of "back scooting" herself under the two tables in the living room. He her tiny leg peeking out from under the coffee table? If I had to describe Emma in one word, I would definitely pick the word "silly". There is another way she has been scooting herself too. She will be in her push up position (refer back to the very middle photo of the 9-picture collage) and she pushes her body backwards until she gets to the other side of the room, or bumps into a bookcase, then sits up. Yay! We do need to be extra careful to watch her when she is scooting around while being connected to the ventilator and her feeding tube, because obviously those tubes are only so long and she often wants to explore further than that. Sometimes I have to make a "fence" with boxes and toys and such to block her in to a specific, safe perimeter.
   I also want to acknowledge Emma's fantastic amounts of sprinting lately. Again, sprinting is when we turn off the ventilator and Emma is breathing on her own, through the trach. She always has the trach in still because she does not yet know how to breathe through her nose and mouth. We started sprinting her in July, after directed by the Pulmonologist. We started at 10 minutes, and over time increased the time by 10-15 minutes each week. She was up to two hours a day in October, and in January the goal was 4 hours a day total, but lately I have just been seeing what she can tolerate. Obviously if she is tired or crying for any reason, then she doesn't sprint as long. But her longest sprint at one time straight was 5 hours (yesterday- before that it was 4) and her longest sprinting day (last Thursday), broken up in 4 sessions was 9 hours!! The day before that was 8 hours, also broken into 4 sessions, but on Thursday I started sprinting her an hour earlier- at 9:45am! Every day is different. Sometimes Michael forgets to sprint her on a day I'm working (I try to text him reminders), and some days we really don't seem to have time because we are all out running around together for errands and doctor appointments, and we usually don't sprint her in public. I try to get at least one or two hours in, even if it's right when I come home from work and she sprints until it's time to do her nightly treatments and trach care. I'm so proud of her and all the growth her body is going through, getting stronger every day!