It's been a while...

I know I neglected the blog for a while. I guess after Nora's surgery I was just trying to deal with everything and in the process, my writing took a back seat. Hopefully I will be able to get back to blogging fairly regularly again, as I know that typing out my thoughts does help me process things a little.

Nora is about five weeks from her surgery for her tracheostomy and g-tube. She has rocked it! We feel that we did make the best decision possible not only for her, but for our family as well. I won't pretend that it's been smooth sailing since, because it hasn't. Having a child with a trach, ventilator, and g-tube is a LOT of work. Just doing the cares, suctioning, and everything else involved with the trach is difficult enough! Then you add the ventilator and all the other stuff...let's just say it is taking a while for us to get into the swing of things. We finally feel like we are starting to get into a routine of sorts, but with two children under the age of two, life is anything but predictable.

Last Monday Nora had her fourth dose of Spinraza. This concludes her "loading doses." From here on out she will be receiving Spinraza every four months. When she had her dose this last time, it was decided that since she moves so much, they will have to sedate her more heavily than previously. Unfortunately this means that days she gets Spinraza will be even longer because we will have to wait for her to return to her baseline. However, it is also very good. That may sound silly, but one thing that happens a lot with kiddos with Type 1 SMA is that they are not able to move well. Nora can really move very well! Since surgery she has gained some mobility and is even able to put her hands in her mouth! As I'm sure you can imagine this is something that makes her very happy and we are equally thrilled. With that said, she is still significantly weaker than most children her age, but she is stronger than most children with SMA type 1.

We have been in our new home almost a month now. It has been quite a process trying to get everyone adjusted to the new house, but we all are very happy here. There are of course some minor things we will need to take care of sooner than later, and of course we have hopes for updating things, but for now we are pretty happy with the way things are. It has been so nice for everyone to have their own space, and it's even better to be able to have a guest room for company! Justin's family all live out of state, so we are really happy to be able to provide a place to stay rather than having people stay at a hotel all of the time.

Currently we are working with a home care company to hire some nurses for Nora and also to get it so that I can care for her at home and get paid for it. I also plan to return to the nursing home to work every other weekend and every other holiday. For the past three months I have really missed my residents and coworkers, and I think it will be good for me to get out of the house once in a while. I am returning for my first holiday back on Thanksgiving and my first weekend back will be the first weekend in December.

So, of course while a lot of things are figured out, there is always more to do. Life with chronic illnesses for both mama and baby makes things a bit more challenging. For myself, I will be seeing my primary doctor next week and will be following up with my neurologist in January. Since all of this has happened, my own care has fallen through the cracks and I can't allow that to continue. It is a constant balancing act because of course if I am not at my best I can't do what I need to for my family, especially my girls.

Nora follows up next week with the surgical team for her first g-tube change and also for feeding clinic. At that time we will evaluate her feeds and how she has been growing. She is about eight pounds now, which though small is an improvement! She and Lydia will both be seeing the GI doctor. We will also see Lifescape to have a seating evaluation and to look at whether or not Nora will need splints. We are fairly certain she needs splints for one of her hands but there is the possibility she will need more than just that. All in all next week will be pretty busy, especially with Thanksgiving and me returning to work. Overall I think I will be happy to return.

We greatly appreciate all of the love and support being sent our way. Time and time again, the power of prayer has been shown in our lives. Thank you all for loving us and our family.