Big Girl in Benik Shorts

    When Emma started physical therapy at the new location, once we moved to this second apartment, in April, her therapist Sara, immediately recommended she get a pair of Benik neoprene wrap-around shorts to help support her core, hips, and legs, on top of wearing the KAFOs (knee ankle foot orthotic) leg braces. I reached out to the company who made her KAFOs to make sure they could make the Benik shorts too, and they said yes, although they weren't covered by our insurance. Luckily, the price wasn't outrageous. Sara and the orthotics company took measurements of Emma to get the Benik shorts ordered and we picked them up on Wednesday, June 29th. They also came with straps for extra support, which were mailed directly to our apartment a couple weeks later.

   After that appointment on June 29th, we stopped by our house in Sarasota that is being built, and carefully walked around inside to see the updates. We were happy and excited to see that the insulation had been put up the previous week! (Oooh, yes, and our road is finally on Google Maps!)

   The girls at the orthotics company (both named Danielle, who we see each time) were so sweet and called a couple weeks later to make sure we got the straps and checked to see how the shorts were working for Emma. However, at that time, she was focused on practicing with the motorized wheelchair trials in therapy, and had not worn the shorts yet. Emma first wore the Benik shorts a month later on Wednesday, July 27th. 

I LOVE these "I'm so proud of myself/this is fun" smiles!!

   Halfway through this first session using the shorts, Liliana wanted to really challenge Emma's legs and see how much the muscles and ligaments around her knee could do, without the use of the KAFOs (and without any patella/ kneecap bones- she's never had those). Liliana tightly wrapped the Benik straps around Emma's legs to give a lot of support in the right areas and held her knees as she took each small, yet accomplishing, step.

I thought it was cute, and interesting, that she looked down at the foot that took a step.

   The following week, at the beginning of August, Liliana worked strictly with Emma wearing the straps around her hips, forgoing the shorts. That seemed to work well also. It was nice to see how well Emma was able to put each ball into the hole of the tower cups without any misses. And in her usual "mess making fashion", Emma would quickly slam her wrist forward, knocking over the tower any chance she got, promptly laughing at her results. 

EM-ZILLA STRIKES AGAIN!!!! RAAARRR!!!

   This was the first time Liliana had heard Emma "talking" (make sounds) and she was very excited by it. I suppose she has been doing it more often now- even daily. I love when she makes her sweet snoring sounds, like repeated high pitched little sighs. During therapy, Emma picked up her suction catheter and kept waving it behind her in my direction. I told Liliana that she might need a suction and felt Emma's chest. It felt a little rumbly and I walked back with the machine to suction her. Liliana was taken back. "She tells you when she needs to be suctioned!?"

   Nonchalantly I replied, "Yeah, she's been doing that for a while now." While I was suctioning, Michael told Liliana all of the things that Emma can do and the different ways she tells us what she needs. Liliana suddenly became much more impressed with Emma's progress than she already was. You may have noticed that in the first two pictures from this session, where Emma has the black shirt on, she is sprinting. But in the rest of them she is hooked up to the ventilator. Liliana also got to see Emma sign to us when she wanted to sprint (her own made up gesture) and when she was "all done" (ASL) .

   Yesterday, I made sure that Emma wore a specific shirt to therapy (the one in the picture above) because this is another one that I am donating because she has had it for a long time, but it has a great saying on it. And I feel like inspirational sayings are especially important for her. Because they are so true! She has proven so many doctors wrong. I specifically remember Dr. Green in Michigan telling me after a conference that he shared Emma's story, at just seven months old, and all the medical data with a few other doctors. And one of them, shocked, said, "There's no way this little girl should still be alive."

   (*whispers* That's God for you.) Actually, why would I whisper that?
THAT'S GOD FOR YOU!!!!! GOD IS A BIG REASON WHY EMMA IS ALIVE TODAY!!!!
He has big plans for our girl. :)

   There is one guy that we see every time during physical therapy. I believe his name is Marco, and yesterday he was there cleaning all of the used toys. While cleaning them, a lot of them were still turned on, so the music would play, which instantly got Emma's attention and she would hold her arm out, signaling that she wanted to play with it. Liliana asked him to bring over the Baby Einstein Ocean Orchestra turtle (yeah, I Googled that). I wondered if it seemed familiar to her because it was one she had before, at our house. Michael thinks it is still in storage and that we didn't get rid of it. I hope not. I always picked that toy for Emma to play with, when I had her in the bathroom during my showers while Michael was at work, because the classical music was the most relaxing. It's also really special, in my mind, because that was one of the toys Santa gave her that for her first Christmas when we were in Michigan!

I put these pictures together so it would be more noticeable that she's taking a step.
In both pictures (above and below), she's stepping with her left foot.

   At the end she signed all done, but Liliana told her we still had a few more minutes. I was sitting close by, so she said, "Let's walk to Mama. Walk to Mama and then we'll be all done." I slid my phone over to Michael and he took lots of great pictures for me! But dang, that had to be the fastest we have ever seen Emma take steps! Not because she loves me so much, but because she was ready to leave- haha!! In the first picture with my arms out, you can even see that she was looking at the turtle instead of me, which is why I grabbed it, and then she "kept her eye on the prize".

   During these three sessions pictured in the Benik shorts, Liliana worked with balancing and weight shifting; rocking Emma from one foot to the other. That way she gets used to bearing weight on one leg/foot at a time, which she needs to get used to for taking steps and walking. 

   At the end of yesterday's session she talked to us again about letting her know when we get our official closing date (it's been pushed back three times- but the kitchen is starting to be worked on now, and the contractor told Michael that when the kitchen is finished, then "the closing date should be in about 60 days") so Liliana knows when to start contacting the physical therapy office closer to our new house. That way Emma can get a slot and new therapist lined up there ahead of time. 

   Before we moved to this apartment in April, we saw a woman named Juliet in March for two physical therapy sessions, and she really liked working with Emma. I told Liliana that, in case we are able to work with her again, but for us, it really depends on who has the latest availability time slot since Michael can't leave work in the middle of the day for physical therapy. Although we are so eager and excited to get moved into our new house, I will miss working with Liliana. I like her a lot. I'll have to add her to our Christmas card list. :)