Give her an inch

The power wheelchair is finally up and running! Her custom seat is all set up for it. Wednesday the seating and mobility team showed up with our physio and OT. They said "She might not pick it up right away. But with practice hopefully she'll get the hang of the control and movement." But she moved it, pretty much right away! She did little movements across the living room. Oh my heart! It was so amazing to see. We were all so proud. Everyone had their camera's out, video taping her, cheering her on.
It gets me back to the reminder that we have no idea what's going on inside for Layla. We don't know where her mind is at, what her potential is. We have to give her more opportunities to show us just go far she can go. Give her an inch, so that she can take a mile, I say.
For now she has to ride around the living room because we don't have the ramp built yet to get it outside, nor the van to go even further. But she only needs the small space to begin with. Once my walls start getting dented.. then that's a different story.
On the medical diagnosis side-I received a phone call today from the doctor who applied for us to go to the undiagnosed disease program. She had just been in contact with them about Layla. They had expressed some concern in sending her to the National Institute of Health. First off they were worried about having someone like Layla travel on quite a long journey to Washington DC, including connecting flights. We would not want any medical issues to happen up in the air. The other worry is that the NIH does not have a pediatric ICU only an adult one who won't take children under 12kg (Layla's only 10kg).  They said if she is put under sedation, which she would be for multiple of the testing they would do, it would be too risky to have her there. That being said, they asked if we would consider going to another one of their sites, UCLA. The flight is a lot shorter and they are equipped with a pediatric ICU, Yay! I said, of course! We just want to see this happen. Doesn't matter which site. We are not ready to give up yet. So now she has to get back to them, find out their wait time, yaddy yadda..
In the meantime, they have decided to start Layla on a mitochondrial cocktail. It's basically a high dose multi-vitamin made just for Layla. Potentially, it could help with giving Layla more energy and thus more strength. We're up for anything! I just read an article about a new drug that has recently come out that can help kids tremendously who have SMA type 1. It was an incurable, life-limiting, genetic disease, prior to this drug being approved. It gives me hope that there could be something out there that can at least help Layla enjoy a longer, happier, healthier life.