Health in Motion- week 1

I'm normally nervous about starting new things. But I felt really comfortable with the drive here and Maggie starting her first day. As I mentioned in my previous post, I was at peace with this decision. I still didn't fully know what to expect from the program and next four weeks, the first day included. But it brought about some great things. We started with Maggie's story from the beginning. I'm very well versed in this explanation, not just because I lived it, but also because I've retold it to doctors and therapists and social workers and school personnel multiple times at various meetings. Natan, the program director, listened, responded with some information and got to work. No paperwork, no explanations, no setting up goals and addressing my main concerns and how we will reach them and by when. Just work. He just started working with her.

And she cried. A lot. Because it was work. Hard work.

In fact the first week was filled with lots of tears, many sessions she cried the whole time. And yes, this was difficult to watch. Not only because I knew she was working so hard and it was tiring but also because she had to work so hard. Who can really stand to hear their child cry for nearly two hours straight? At her second session she cried the minute Natan walked in the room. Why is it such hard work? She's been in therapy since she was 8 months old...almost 2 1/2 years, right? Simply said, Natan's approach is different. He teaches these kids how to use their bodies in a functional way; Maggie has never had to move her body like this before, she's built up a lot of compensations over the years and he was working to break her out of those. Plus, we did a lot of stuff for Maggie. He is requiring she do it herself and not taking no for an answer. Offering more guidance when necessary but nothing will get her off the hook. By the end of the first week, she was crying less and not only accepting that Natan wasn't going to be bought by tears or pouty lips, but also realizing that she really could do it. I remember the first day she smiled because she rolled perfectly on her own. Rolling up and down the mat has been her favorite since.

And with hard work comes great reward and lots of progress. By the end of day one Maggie could roll (properly), sit (properly) and crawl (properly) by herself. I parenthesized 'properly' because she did these things before but not the way typical children do and not in a way that's functional for independence or in many aspects, good for her body...bones, joints and such. Her transitions into these positions required verbal and physical cueing but she was doing it. By the end of the first week, Maggie needed very little physical cues, mostly verbal (turn your head to the right, bring your left arm across your chest, roll your head, lean forward, etc.) We provided this guidance but she was doing it herself. Maggie was opening her hands more, even bearing some weight, much better trunk control, proper transitions, handing the ball to Natan with open hands and bearing weight through her feet. She was also standing with a ball for support (which isn't exactly stable) for nearly a minute. And walking in a walker. It was amazing. We were strongly encouraged to get a wheelchair before coming here and she's in a walker after only one week!

day 1- waiting for Natan to come in for Natan to come in for session 2. First
time in a long time she hasn't fought with me to sit on her bottom and not
only stayed seated, but played ball with me as well

out cold at the end of first day

I'll try not to get overly detailed about his methodology, but it's unique to Natan- he created it and it clearly works. He focuses on functional movements, not exercises. I never really thought we just exercised Maggie, but I can see the difference. It's not about strength, just movement. We'll use Jake, our 1 year old, as an example: when he learned how to sit up, crawl and take steps, he didn't exercise to get stronger so he could acquire the skill, he just learned to use his body. And the same goes for Maggie and how we need to approach her; she needs guidance to achieve these functions as she wasn't able to learn them on her own. And it's all about the transitions.

grandma and Jake get to visit

 Now, the way he works with her and requires her to transfer from one position to another is not typical in child development. This is not how Will and Jake learned to move. But it's necessary for Maggie because she hasn't learned the proper way and needs the guidance to get there. The transitions are integral to changing her internal pressure and to pump fluid properly through her body so her brain will get the nutrients necessary to learn. Also, these transitions aid in trunk control which is vital to controlling other parts of her body. The constant verbal cues are also integral to the learning process and over time it helps take the intense concentration involved with learning a new skill to one that is more precise and second nature. Also, we have not used her hand splints, AFO's or gait trainer since we've been here. We have used a walker as she learns to support and bear her weight properly, but she doesn't need the other equipment. So there's that.

When I told Daniel about Maggie using the walker and taking steps, he got so excited. He said, "I just want to call everyone and tell them! Wait, no, I don't. I want them to see for themselves." That's when we decided to wait on progress updates until Maggie came home and could show off. 

We have a lot of work to do at home- it doesn't stop at the clinic- it's not about exercises but function, LIFE function. We're so excited!

As the first week ended, we had to say goodbye to grandma, but not long after we welcomed daddy and Will! Maggie and Will decided to share a bed the first night- I think they missed each other. :)