On our own
Just a quick update, Spencer did okay snowboarding last weekend. He was so excited to tell me that he reached speeds of 49.6 mph coming off the mountain. Oh joy! I tried my best to be happy for him and I hope it was convincing but inside I felt sick. He feels so accomplished I know I can't squelch that, especially after the year he's had. It's been tough. It is tough. The fallout of that day did indeed come but not as bad as I thought it would be. He is doing okay and for that I am glad.
This week has been hard. I felt more alone in dealing with the kids' problems than ever. I hate the feeling of being on my own in the care of my kids. It's getting really complex and I feel overwhelmed most of the time. Only one doctor ever emailed me back and that was our GI. He suggested that possibly, Spencer had Botulism but after reading about that, I knew he didn't have that. It's a mystery what caused such a dramatic change in him for nearly three weeks but I have my theories and ideas.
So, according to me, since our doctors didn't bother getting back to me, I think the steroids were just too much for Spencer's system. In addition to that, it caused a mito crash. As I talk to other mito moms, what happened to Spencer has happened to other mito kids so in my mind, that's what the deal was.
It has been extremely frustrating to deal with these issues and have no support in place. I am going to push for the muscle biopsy with our next bone marrow biopsies which are suppose to take place in January but I may try to push that to later in the Spring. I'm just not ready for a winter drive to Seattle and so far, their blood counts seem stable. Of course, if our Oncologist thinks it's best to come in January, we will.
Shelbie will get her infusion next week so that she will be well for Christmas. At least that's the plan.
Sam has had a bad week. He tweaked his back doing gymnastics and then in gym class, he rolled both his ankles. He's been on anti inflammatory medicine all week long, ice packs and heat and we have to keep them wrapped. If those don't improve by early next week, we will do xrays and try to figure out what is going on. It seems weird to me that he would roll both ankles more than once.
Things have been relatively quiet on the medical front. Hoping we have a couple more weeks of calm.
This week has been hard. I felt more alone in dealing with the kids' problems than ever. I hate the feeling of being on my own in the care of my kids. It's getting really complex and I feel overwhelmed most of the time. Only one doctor ever emailed me back and that was our GI. He suggested that possibly, Spencer had Botulism but after reading about that, I knew he didn't have that. It's a mystery what caused such a dramatic change in him for nearly three weeks but I have my theories and ideas.
So, according to me, since our doctors didn't bother getting back to me, I think the steroids were just too much for Spencer's system. In addition to that, it caused a mito crash. As I talk to other mito moms, what happened to Spencer has happened to other mito kids so in my mind, that's what the deal was.
It has been extremely frustrating to deal with these issues and have no support in place. I am going to push for the muscle biopsy with our next bone marrow biopsies which are suppose to take place in January but I may try to push that to later in the Spring. I'm just not ready for a winter drive to Seattle and so far, their blood counts seem stable. Of course, if our Oncologist thinks it's best to come in January, we will.
Shelbie will get her infusion next week so that she will be well for Christmas. At least that's the plan.
Sam has had a bad week. He tweaked his back doing gymnastics and then in gym class, he rolled both his ankles. He's been on anti inflammatory medicine all week long, ice packs and heat and we have to keep them wrapped. If those don't improve by early next week, we will do xrays and try to figure out what is going on. It seems weird to me that he would roll both ankles more than once.
Things have been relatively quiet on the medical front. Hoping we have a couple more weeks of calm.
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