I think everyone was hoping that this would be a relatively short hospitalization. That just isn't going to be the case. For the most part we are at peace with this. Nora needs a lot of intervention in order to give her a good quality of life.
Care Conference on Friday was very productive. Everyone is on the same page. They all agreed that SMA is just a very different disease than it was 2 years ago. We didn't know that Spinraza was so promising. It came too late for Millie. And advantage for Nora is that she is getting the Spinraza, and we also had the diagnosis significantly earlier than we did with Millie. She was not diagnosed until 2 months of age. Nora was diagnosed more than three months before she was born.
Justin and I had a chance to ask all of our questions with the entire team face to face. We both felt that our questions were answered and also felt a tremendous amount of support from everyone. After discussing it, and getting our questions answered, Justin and I have decided that when Nora is able to have surgery for the g-tube, she will also get a tracheostomy. There are a number of reasons why this a preferable choice, not the least of which being Nora's comfort and wellbeing. This way we are only putting her under anesthesia one time, and there is only one recovery period instead of two. Also, with the length of the recovery period, Nora will not be coming home until we move. Honestly this is probably for the best. Our current house won't have sufficient room for Nora's equipment, and the girls would have to share a room which would be very cramped.
Of course, there is also the added stress of our family essentially being cut in half for a prolonged period of time. We are struggling with this. Justin was not able to spend the weekend here because he is on call for the Nursing Home. I went home for a little while yesterday to grab some additional items and also to get my car. Being able to get from place to place on my own is a plus, especially since it looks like we're not going home for a while. As I'm sure you can imagine, Justin and I are both struggling with not being with both of our daughters. I miss Lydia terribly, and he misses Nora. But again, this is all for a purpose. Soon we will all be home together, and that is what we are all holding on to.
Nora has been doing very well. The thickened formula which is also fortified with extra calories seems to be doing its job. She is up to 2.84 kilograms from 2.78 kilograms. We are getting close to our 3 kilogram goal which means we can go forward with surgery! Physical, Occupational and Speech therapies have all been working with Nora, and will continue this to keep her joints mobile and maintain her current muscle strength as much as possible. I'm sure therapies will also help us find a mobility solution (though we are thinking wagon right now).
We must emphasize, however, that we are going to be extremely cautious with both Nora and Lydia. An illness can have catastrophic consequences for Nora. If Lydia were to get sick, it is nearly impossible to keep her away from Nora. For this reason, there will be a sign in our home explaining the rules (wash hands or sanitize, remove shoes, no kisses, can't come in if you have been in contact with anyone who is ill, cell phones need to be left in a basket). Some of these might seem extreme but I assure you each one has a valid medical reason. If these rules aren't followed, we will have to turn people away. It's not because we are trying to be rude or overprotective, it is to protect Nora as much as humanly possible from an illness that could easily land her in the hospital or even (God forbid) take her life. I am also going to STRONGLY ENCOURAGE everyone to get a flu shot if they plan on being around our kiddos. I am not pushing any sort of agenda, but I do think the shot is something that has the potential to help protect the girls.
I understand that this is all a lot to take in. Believe me, Justin and I have thought about this, cried about it, and prayed for God to show us what the right path is. We both feel that this is the best possible decision for Nora. Please do not tell us what you would do, or what you think we should do. With all due respect, you have no idea what you would do unless you have actually lived it, and Nora is our child and as such, it is our decision to make and no one else's. So if you are going to tell us that you think we're not making the right decision, I kindly invite you to take your leave. We do not have room for that kind of negativity. There may be a day when Nora will no longer need a feeding tube or a trach. This is a very slim possibility right now. While we are all very optimistic about hope for Nora's future, we also can not bank on the fact that this will change what already is. Nora has experienced a very rapid progression of her disease, and we are supporting her in all the ways we can because we believe she needs this chance.
We appreciate the love, support, thoughts and prayers. God has continued to bless us despite this storm.
Sami
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