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.

Who you know.

The small amount of sleep Layla gets on a regular basis has always been a concern. She gets no where need what a child her age should be getting. We know part of the issue was/is reflux. When she started reflux medication in February, her sleep got a bit better. But it's still not great. Now Layla's therapists have been questioning Layla's breathing patterns. Wondering if lack of oxygen at night could be part of the reason she wakes frequently.
We brought up the issue with the pediatrition and she agreed to get her on the waitlist for respirology and ENT (ears, nose and throat). I called the respirology clinic to check in on our application when she told me that they hadn't received the referral. But stated that it would only be about a months wait if we got it in as soon as possible. So I got a hold of the doctor and asked her to re-send the forms. Then when I called again to check that it was received, I was now told it would be a 10 month wait! No idea how that changed so quickly but I was discouraged. Isn't breathing is a serious issue? You would think that there would be a high priority to get in right away if there is concern.
The really frustrating part for me was that we had both respirology and ENT doctors when we were in Ontario. They were supposed to put the referrals through themselves when we left there over a year ago now. I guess that never happened. And obviously we had gotten busy with other specialists and priorities that we hadn't ensured that those referrals were put through. So I guess that's sort of on us for not confirming.
The therapists suggested that we might need to take Layla into emergency at the children's hospital so that she could be seen sooner. Unfortunately that is the one way to avoid long wait times. Not ideal, but that's life. While mulling over the thought of doing that a new friend of mine who is all to familiar with the hospital and specialist world with her son got involved. She had noticed similarities between Layla's symptoms and her sons when he needing to start on the bi-pap machine while sleeping. While at BC children's last week she saw the respirologist and explained our situation and the wait time. He wrote down Layla's name and said to tell me to call and book an appointment ASAP. We got in Friday. Going from a 10 months wait to a 2 DAY wait. Isn't that insanity? How can it be? The only thing I can put it down to is that it's all about who you know.
I'm very thankful for this new friendship. She is almost 2 years ahead of us in her journey with her son and it's already been beneficial. Not only to have someone who understands the emotional side but also the practical side of life with complex children. I'm starting to realize how important it is to not feel alone through this all.
The appointment went great on Friday. The doctor heard history and what is going on now. He saw the need we have for more help and support through the children's hospital. We were sent home with a sleep apnea kit to monitor Layla's sats over the night. I'll bring it in this week to be reviewed and we will go from there. Even if she does not need to have the bi-pap machine brought home he is going to direct us to where the help is needed.
I explained how I'm currently feeling as though they have us waiting in limbo to find out if the NIH is going to take us on. But while waiting, doing nothing much in the mean time. I will be especially frustrated if we do not get accepted into the program. He agreed. He said the hard truth of that he is slightly skeptical that they will ever find a diagnosis if they haven't at this stage in the game with the amount of testing that has been done. He understands how frustrating it must be as parents to not have more answers as to what the future may hold but unfortunately it's all too common not to have answers. That being said, he said that doesn't mean she needs to be given up on. Symptom management is the number one priority. How can we help Layla live her life at her highest potential and with the most joy? That thoughts been around for a long time but is still so important.
Too often I sit back and just trust the doctors who see her for such a short period of time. But what I'm starting to understand more is that sometimes I need to fight a bit more. If I know there are issues in a certain area I can't let anyone tell me that they are not there. Fight for that second opinion. Use the connections that I do have. I am Layla's biggest advocate and there will always be new battles.