An exciting update

This update is exciting for a few reasons. There have been a few things in the works lately and I've been so busy with things I haven't really had much time to update the blog.

First, the thing most people have been wondering for a while: We finally heard back two weeks ago from the Department of Human Services regarding our hearing about Nora's Spinraza treatment. The decision not to pay for Nora's Spinraza was reversed. Meaning, Medicaid will now pay for it. I have worked for months on making sure this became a reality, as did our neurologist and her very tenacious nurse. I felt pretty good about our chances after the hearing because I don't feel like there were any holes in my case. Really it was pretty straightforward. Nora's disease has progressed a lot slower than it would have otherwise. The fact that Nora is able to sit up on her own is amazing. Without treatment, a child with type 1 SMA will not sit up. It doesn't happen. She can also roll over, hold toys in her hands and kick her feet. These are all things Amelia was never able to do. Needless to say, we are very relieved that it's over. Nora will be receiving her next dose of Spinraza on the 15th. This time she will need to go to the Operating Room since they will have to do more sedation. She can not be trusted to lay still when they are doing the lumbar puncture to

give the Spinraza. We obviously want to make sure she gets all of it. I would be lying if I said I wasn't a little nervous, but the team will take good care of her.

Lydia is holding her own these days as well. However, she is two which is a challenging age. She's a very sweet little lady but also has a very stubborn and sassy side. I'm happy she is strong willed as that will serve her well in the future. I just have to survive raising her first. She is very smart and bright. She can tell you what all of Nora's machines are. She knows how to silence the alarm on Nora's ventilator. We didn't teach her, she just picked it up watching everyone else do it. She definitely has a passion for books and has a lot of them memorized. Her vocabulary for her age is very impressive. I am so incredibly proud of her I could burst. She's also hilarious. Some of the things that come out of her mouth are just so funny and they come out of nowhere. It's hard to believe in February she will be a big three-year-old.

Things for me have been a little touch-and-go. My GI symptoms have really gotten out of hand the past few months, and I have not had much of a reprieve from that. A lot of the changes I have made to my diet helped for a while and then it seems like no matter what I eat my GI symptoms get worse. I followed up with my GI doctor on Friday and he is having me try two new medications to see if that will help me. So far I think it has helped a little. My appointment in Philadelphia is next month. I am desperately hoping the Mito team there will be able to give my doctors here some more guidance. I am really needing better care. My doctors here are doing their best but I am a bit too complex for them.

I am also working on revamping the Blog and getting my YouTube channel off the ground. Since starting the channel I have only done one video about Nora's Trach and G-tube experience. The channel will probably have a whole bunch of different topics covered. Things like cooking, organizing, life as a family with medically complex kiddos, budgeting, etc. Most likely there will also be some medical updates and the like. I'll be sure to link to the channel on our Facebook page and here on the blog.

I will update again soon. Thanks for stopping.

Sami