Sophie Kate attended 3 out of 4 school days last week. I guess I should count that as a win given that it was her first week back. It's definitely a learning process by all involved getting her back in school. She has more equipment with her and more individual help with her than ever before and everyone is coming together to make it work...it is no easy task.
Sophie Kate is doing good on her portable oxygen unit. We are still monitoring her oxygen levels when she is on it at home and we have taken her out of the house while using it twice now. I say "we" because I haven't attempted it by myself yet. It still feels like it is so hard to get out with her. We already had two bags with us every time we left the house with her and now we are adding one if not two more each time. I am also finding it difficult to carry her back and forth from the house to the van by myself. I knew full well this day would come, but I didn't expect it so soon.
My head tells me it's just one or two extra bags, it's doable it's not that much more...but my heart tells me differently. My head tries to remain rational, but my heart ends up winning out. My heart hurts and it's sad and it's having trouble getting happy again. As strong as she is, she just seems more fragile to me. I can't imagine what a full blown sickness would do to her right now, so we have to keep her well. I am constantly thinking about her oxygen levels, the status of her lungs and whether or not she needs to be suctioned. We haven't been out with her much at all, but when we are I think about when we need to get back home with her.
We didn't make it through church yesterday because her O2 sats were low and she didn't look good. She has only made it to one of Cooper's football games and that was the only one he had before all this stuff started. Three of us went to the homecoming parade with out her this year. This isn't the "norm" for us and I don't know whether it should be now or whether we fight and push to get her back out there. And that's what it feels like to me right now a fight and a push, I don't know if we should be doing that.
This is all still very new to us and maybe I just need to give us a break and give us time to figure it all out. I feel like we need more time to get our feet under us again, but I don't know how much time we will need. I feel guilty and sad and completely consumed by medical stuff. We asked Medicaid for more nursing hours since Sophie Kate's care has changed and we were told "no," big surprise there.
I can feel the battle going on inside my head and my heart, it's a tough place to be in. I look at her, she makes me cry and smile almost at the same time. We have more appointments today, more talking about all this hard stuff and more decisions to make. With no words at all, she has taught me to be content in my circumstances. She changes the world around her with her smile. I will see that smile today and through that smile and in those big brown eyes I will see the beauty in this day.