Gait Trainer

   Along with the wheelchair evaluation that we took Emma to on May 9th, which she was doing trials for in therapy in July, that evaluation was also for her to get a customized gait trainer. I describe it to people as "a walker for toddlers". It's so cute! Emma got the Rifton Pacer Mini. We asked for hers to be hot pink! The one she tried at the evaluation was the small size, but everyone agreed that the mini would be better for her. She did cry at first when she was put in it. I'm not sure if she didn't like it, or she was just tired, because we had to wake her up at 6am for the appointment, but once Michael helped move her legs and feet she seemed to become okay with it. She grabbed the handles all on her own!

Proud girl!  "Did you see what I did, Mommy?"

   Emma actually had a little practice with a gait trainer before the evaluation, but it didn't look quite like that. It actually looked more like a baby walker, but the one in the evaluation- the one she has now- is more for first time learners. It has the "seat" piece between her legs for when she gets tired, but it's actually more to help keep her posture upright. There was the option for the Rifton Pacer Mini to come with a big curved handle on the front, for the parents to be able to push the kid, but we said we didn't want that. "It's all you, boo!"  (They did end up giving it to us anyway, but it is easily detachable, and does end up being very helpful when I'm pushing it from the apartment to the car, and into the building for therapy, while Michael is pushing Emma in the stroller.)

   So Emma's first time trying the cutest little walker was in physical therapy a few days earlier with Sara, on May 5th. (Sara was the physical therapist she had before Liliana.) She had Emma start by sitting on a stool with the walker behind her, and lift herself up by holding onto the sides. This one was different because it didn't "cage" her in, so she could easily fall forward and hurt herself if this was the one we got. For that therapy session Michael stayed in front of her and she walked towards him. 

  Emma was wearing a pretty dress at this session because afterwards we went out to eat for our 11 year wedding anniversary a couple days early. (<< click that link if you want to see some of our wedding photos!) I usually pick the place -we tend to lean towards Italian-, but as the time got closer, I wasn't feeling it. Michael decided that he would like to find a place for us and he picked such a good one! It was kind of upscale, but cute and comfortable. We shared the duck confit flatbread, Michael got a steak, and I quickly learned that I love butternut squash ravioli. The most perfect part was that there were not many people there and we got a cool corner area with a beautiful chandelier! Romantic!

  **For a wheelchair update though, Emma's trials in physical therapy with Liliana were with an E-Fix Power Assist motor. She is far too small, and even the TiLite Twist wheelchair is too heavy and too wide, for Emma to push on her own. She needs the motor to be able to move it around. However, we found out in July that all insurances deny the motor for about a year until you can prove with documentation that the child/person cannot move the wheelchair on their own. Then you have to apply for the motor after that. Michael was fuming when I told him and said, "That is such a waste because her wheelchair will just be sitting in our garage that whole time!" We aren't even sure if our insurance will cover it at all, even after a year, because it might be something that isn't "under our benefits" according to the person I spoke to when I called our insurance company about it in July. They told me that we can try to appeal it through Emma's pediatrician, but that doesn't guarantee anything. And the motor is a really expensive add on. That made Michael extra mad. 

  Anyway, Emma's gait trainer finally arrived at our apartment on Monday, August 15th at 11:30am! It was dropped off by Eric, the same consultant from NuMotion who we met in May. He helped me for about an hour, trying to figure out the best way to get all the straps and the "seat" situated so Emma would be in a good standing position for walking. She did not like standing that long and kept signing "all done" with tears in her eyes. I gave her lots of kisses and told her "just a minute, you're doing so great", but the minutes kept on coming! When she stands, she tends to stick her butt out, so Eric and I were trying to come up with ways to avoid that. How could we move the seat so it wouldn't let her stick her butt out?

   By the way, the reason I keep putting the word seat in quotes is because it's not really meant to be a chair for her unless she has been walking for a while and needs a break. She should be standing the whole time, with her legs straight, and a few inch gap between the seat and her crotch, especially since she doesn't usually use it for a long time at once. The whole point of getting approved for the gait trainer and the motorized wheelchair is that, say we are at Disney World for the whole day a few years from now: Emma would use the gait trainer as long as she could. Maybe she would take appropriate breaks in the long lines and use the "seat" to rest her legs, but eventually her small body and lungs would get worn out and need the motorized wheelchair to get around for the rest of the day. Or, at least, need it for a few hours before deciding to switch back to the gait trainer, and sitting in the "seat" during the firework show! :)

   That night Michael worked with her and the gait trainer, but she already had enough from the morning. However, next night Michael worked with her again and she had a completely different attitude! She did so well and made it all the way around the kitchen loop in our apartment! I did lure her with a big crinkly bag, and Michael kept helping move her feet (he said he didn't do much). Emma barely had any tears until the very end when we told her she had five more steps. 

The first night! Ha- those eyebrows (in the left picture)!

   The following day, Wednesday, August 17th, during physical therapy with Liliana, it was an adjustment trying to figure out the best way to work with Emma in the gait trainer. Liliana likes to hold Emma by her hips, which is really good, so Emma has to do all of the leg work herself, but there are so many straps, and bars, and cushions in the way. So we put the gait trainer to the side and continued to work on the basics. Liliana was definitely correct in saying that Emma has to learn to walk (and really learn to shift her weight from one leg/ one side of her body to the other, in order to take each step- isn't it crazy how we don't even think about that when we walk!?) before she can fully use the gait trainer. 

   We bring the gait trainer to every session, but last week Emma was doing well with taking steps and the time went by quickly that we didn't use the gait trainer. However, on Wednesday, August 31st, Liliana made it a priority, and took the "seat" out that way she could hold Emma's hips while Emma walked towards her and still had the support of the side handles. She wrapped the Benik short straps around her hips and the top of her KAFOs, low enough for stability, yet still high enough that Emma was able to take her usual "kick steps". 

   A few minutes before the end of the session, Liliana was so impressed to see that Emma now (over the past three or four weeks) has been putting objects together, including her suction tubing when she needs to be suctioned. In July, Michael started putting lip balm on Emma's lips after brushing her teeth at the end of trach care, and she can -eventually- put the cap long back on the lip balm.

  Emma's purple TiLite Twist wheelchair should arrive later this month, but Michael might take it directly to the storage unit because it would take up too much space in our small apartment, especially since Emma can't use it without the power assist attachment.