I haven't been very good at writing lately. It's not always for lack of desire to write, though I do think that there is something to be said for that as well. There have been a lot of things on my mind and in my heart these past couple of months. And with the change of the seasons I'm more aware of all of the changes that life has thrown my way. Many of them I didn't ask for.
I've known for a while that life is not going to be smooth sailing. I have two children under three, one who is severely disabled and requires extensive 24 hour care. We have been blessed with being able to add another nurse to our team, but if something happens and a nurse is not able to come, everything falls on me. And I'm not complaining about that necessarily. I know it's a blessing to be able to stay at home with my girls and get paid for it. However, it's certainly not easy by any means.
Nora turned one year old on August 28. A huge milestone for many reasons, not the least of which being her diagnosis and the fact that her sister didn't make it to her fourth month. She is a very smart and happy little girl for the most part. But I've noticed lately she seems to be frustrated. I think she's frustrated because she isn't able to talk and she knows that there are things that Lydia can do that she can't. For the most part, the physical abilities will most likely be something she will learn to accept. She has to go through her own grief process, and will likely grieve multiple times for multiple reasons. SMA is still a very difficult disease at times, and her treatment doesn't cure it, but allows her to have more mobility and a better quality of life than she would otherwise.
The Spinraza is a whole other can of worms. We've been fighting for months to get Medicaid to approve it. The drug costs $125,000 per dose. I realize that's a lot of money but this drug has given her more than we could ever have dreamed. Yes, she's still disabled. But she can play with toys, sit up on her own and roll too! These things would not be possible otherwise. SMA causes the muscles to atrophy and weaken. Amelia couldn't even hold her own head up or hold a toy. We have gone through a number of appeals, and are on our final one. Nora's neurologist has done everything she can do. The ball was in our court, so I wrote an appeal letter. The Department of Human Services then decided to have a hearing about it. The hearing happened early last month and we are still waiting on the final word. Regardless of whether or not Medicaid will pay for Spinraza, the company Biogen that makes Spinraza will cover the cost. We just have to play the insurance game before they will do that. Again, I understand that. It's just a lot of work on top of all of the things we already have on our plate. Whatever happens is going to happen, we just have to be content with the fact that we need to wait. I don't have the energy to be angry about it, so I'm largely just at a place where I know I've done what I can do and the rest I have no control over.
My own health has not been great lately. I have had many nights where I am unable to sleep due to severe nausea and GI pain. For the past couple of months I have not been able to eat supper because if I do the nausea and pain are much worse than they are otherwise. This makes it harder to get the nutrition I need. I have been working with my GI doctor to troubleshoot these issues, and he started me on a new medication to help with the nausea and pain. Unfortunately it seems to have made things worse. So now I have to talk to him about other options. Lydia and I will be leaving to go to CHOP (Children's Hospital of Philadelphia) in December. We are hoping for some answers and help.
I haven't been able to take care of myself like I need to. I'm still burned out. But, Justin and I have a couple of trips planned for just us to go on in the near future and next spring for our anniversary. Hopefully this will be helpful for us. My self care has really taken a back seat. Because I haven't been feeling well I haven't been working out. I haven't done very well at all with hydration either, so I am working on that. I have also been trying to make and stick to meal plans to make sure our family gets the nutrition we need and we don't waste food.
Over the past few months in addition to Millie's angelversary I have had two friends pass away. They both had Mito. It has been very difficult. One of them was one of my best friends. We talked quite a bit but I remember now that over the months leading to her death, we hadn't talked quite as much. I so wish I could have seen her at least one more time before she died. We were able to attend her funeral which was helpful in some aspects but it still shook me to my core. I think of Liz every day and how much I miss her. She passed away three years to the day after Millie. I do find some comfort in knowing that they are together and she is holding Millie while I can't.
My other friend Kat's death has been difficult. I haven't really processed it at all. It came just about a month after Liz's death. I'm still having a hard time with that. But, I know that she is at peace. We only met once but I am so thankful for that one time meeting.
We have an appointment coming up next week to get Nora's wheelchair looked at and also to look at getting her some orthotics for her feet. Next month both of the girls see their GI doctor and Nora will see her Pulmonologist. Then come the holidays. I am not ready for the snow but I do enjoy the fall weather. We usually don't get fall in Minnesota.
Thanks for checking in with us. Continued prayers for peace and comfort as well as answers in our upcoming appointment would be greatly appreciated. I also ask that you would pray that we don't have any obstacles for this appointment. Insurance is much less likely to pay for an out-of-state medical visit.
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