Wheelchair Trials

    On May 9th, we had an appointment scheduled for Emma to test out a gait trainer and wheelchair, as well as getting them both ordered. That was a very exciting day! Originally the thought of her being in a wheelchair made me sad since her legs work and she just got that surgery and she's in therapy learning to stand and take steps. But in April, her physical therapist, Sara, said that the wheelchair would be more for long term travel, such as going to Disney where Emma and her lungs might get overworked trying to move her little body that far all day. So the wheelchair would simply be an assist, not a permanent piece. 

      I guess we could think of it like sprinting (not running). Emma really likes to sprint these day, meaning she gestures to us when she wants to be disconnected from the ventilator. This way it gives her a chance to work her lungs more and also scoot around the apartment. Her Pulmonology doctor says we are definitely aiming for the goal of having her sprinting all during the day, and only needing the ventilator at night, but who knows if that will be accomplished by Christmas or in three years? I've learned to stop putting hopeful timelines on her progress. They only make me laugh when I go back and read these posts. Or man, if its a NICU post, so many of them ended with "hopefully she can come home soon/ at the end of this month". Poor, naive, new Mommy Rachel, not knowing that tiny Baby Emma would be living in the hospital for almost 11 months!

her "Sprint me, please!" gesture

brochure for a different pediatric wheelchair

getting more measurements

   So... We were at the wheelchair evaluation longer than Michael and I expected. (I am solely focusing on the wheelchair in this post. I'll probably do a gait trainer post next month- or whenever I get in another blogging craze!) We were there at the Sarasota location from 8 to 10am and the company that helped us is NuMotion. They told us it could take up to four months to get the wheelchair and gait trainer, but that the gait trainer will probably arrive first- being delivered to our apartment. We decided on the TiLite Twist with an E-Fix add on, so it has a little joystick and slow motor to help her get around until she is strong enough to start moving the wheels herself and beefing up those little arms! We also wanted one that wouldn't be too heavy and could fold down easily so we could fit it in the trunk. We did not want to have to get a whole new vehicle for this. Michael is always trying to find ways to adjust things so our medical life is still as normal as possible.

   A month later, on June 7th, the wheelchair that is similar to the one Emma is getting customized for her (hers will be plum purple and her gait trainer will be bright pink!) arrived at the building where she is currently getting physical therapy sessions. We'll switch to a different location after we've moved into our house later this year. We told Liliana today and she was bummed, but excited to hear about the house. That June 7th session was with Sara, our last day with her, because she quit the following week. Emma first cried when she got in the wheelchair, but quickly warmed up to it!

  Michael and I have talked for years about getting a handicap decal for our car for Emma, but felt like it was too much of a hassle. And who wants to go to the DMV if you really don't have to? Plus everywhere we went in Orlando, the handicap spots were always already taken. But getting the wheelchair ordered got us motivated and Michael made an appointment. After being there only 30 minutes, we got our decal! 

  The second wheelchair trial was with Liliana on June 29th. It was great to see that the second Emma was placed in the chair, she reached for the joystick! However, she was hesitant to move it. We gave her toys to "lure her" across the room, but that didn't interest her too much. Since there is not a place to put her ventilator on this wheelchair, she does have to sprint for the full 30-40 minutes. Usually it is not a problem, and she continues to breathe well, but one day she kept signing "all done" then held out her arms to be picked up. When she gets her own wheelchair Michael will figure out a way to hook the ventilator to the back (if needed). 

   Liliana continued to attempt to find objects to put on/around the joystick so Emma would want to hold on to them. She used different colored and textured rings and also worked on Emma reaching to put the rings back on their pole. Liliana explained to her that when she moves the wheelchair it can get her to different places faster. While moving around the hallways, Emma does get easily distracted by the lights, framed art on the wall, and every open door.

  The third session, on July 13th, went much better and Emma would make the wheelchair move, especially if Liliana was holding her other hand to guide her. Although, half of the time, she would pull her arm away if Liliana touched her. It was nice to see that Liliana always laughed at that and did an immediate impression instead of getting offended. We rode around the front lobby and a little boy we hadn't seen before (who was waiting for his older brother in therapy) began cheering along with us. "Go, Emma, go!" His name is Johan. 

   At one point, when Liliana was talking to us about bringing a sturdy pillow for the next session, Emma took hold of the joystick and started heading towards the door. And she didn't stop! She went probably a good 30 feet and Liliana quickly rolled over in her stool to open the door -and Emma kept zooming into the hallway! That was soooo hilarious and impressive! It really is fun to watch her learn all these new things. And I am so happy that I caught that moment on video.

   I have realized these past few weeks that I could never be a type of learning therapist. I don't have the patience for it. Even I want to be like, "Come on, Emma! Push the thing! She's shown you, like, a hundred times! I know you can do it. You did so great last week. Remember when you almost ran us over? You're not even trying today. And get your finger out of your nose!" That last comment is legit. The past two sessions Emma keeps putting her pinkies right in the edge of her nostrils. If Liliana gently pushes Emma's arm down, she'll put the other pinky in her nose, and then laugh. Michael and I roll our eyes at each other. Kids.

  On Emma's way back to the main room, Johan's older brother walked by us in the hallway and his therapist told him to say hi to Emma. His response was, "Why? She can't talk." I was definitely taken back by it because for the past five years, I have always seen other kids watch her from nearby because they were interested or they would smile and wave at her. I feel like a girl pointed once saying, "Mommy, look, a baby!" I do remember when we went on Emma's first (and only, so far) mountain trip, a girl on the swings next to us asked her dad why Emma had all the medical equipment. 

  Liliana and the other therapist told Johan's brother that even though Emma can't talk, she can still say "hi" by waving and smiling. She is pretty good at high fives and we're trying to teach her to give fist bumps, but she "bumps" us with the back of her hand.

     On a related note about her not being able to speak, that does not take away from her brightness and development. Emma is so smart and we definitely talk to her like a big girl. Michael has a big pet peeve of people talking to her like a baby just because she is small. (It makes me think about when we went out to eat with new friends from the Potentials Foundation and two of the girls with us have primordial dwarfism too. The waitress looked at the adults and asked, "Do they want kids menu?" and one of the girls answered for themselves. "We're 24 years old. And I'd like a beer." Clearly the waitress was surprised, but they had valid IDs.) 

   I like that Liliana talks to Emma and gives her instructions like the big girl that she is. Even if she does call her Baby Love. ;)  I believe next week she will go back to practicing standing and walking, with the assist of her KAFO (knee ankle foot orthosis) leg braces and new hot pink Benik Neoprene shorts!