I decided to change the link about Neurofibromitosis in my prior post. I think the new one is a little bit easier to understand. The Children’s Tumor Foundation website has a lot of information on it. I was looking it over at work yesterday. I definitely will be spending more research time on their site.
Archive for the ‘neurofibromitosis’ Category
Exhausted . . . . Well, not so much now
December 13, 2007What a week this has been and it is only Thursday.
Monday we headed down to Lansing (1.5 hour drive) for doctor appointments on Tuesday. We thought it would be better to stay with family and not have to leave our house at 7:30 to get down in time for the first appointment at 9:30. That plan would have been fine if Russ had remembered to grab his pills . . . . he couldn’t sleep and because he didn’t sleep well, if at all, I didn’t sleep well and neither did William.
It was nice to spend time with family though. We got to go to my sister’s Christmas band concert and see some people we used to go to church with who I had taught in Sunday School.
Tuesday’s appointments went well. I think we have Russ back on track with his medications for his chronic fatigue syndrome. Our new doctor in this area really changed his medications and it has affected his quality of life, but I think we are headed back to a good place. The doctor did give Russ some sample medications at his appointment.
Tyler and William had appointments with the geneticist. There is a family history of Neurofibromitosis (NF1), Russ has it and so does his dad though I don’t believe his dad has ever been formally diagnosed. I found the first “cafe-au-lait” spot on William when he was 3 months old, so right then I suspected that he had inherited it. At 7 months he almost met criteria for diagnosis and at this appointment he did meet criteria. His head is bigger than his brother’s! (another sign of NF). I just need to get more educated about it as I can be the advocate the William and Russ if necessary.
After that appointment, we were headed right home. I wanted to sleep in my own bed and get a good night sleep, but God had other plans . . . road debris that did MAJOR damage to the underside of our car. We had to wait until Wednesday for the car rental place to have a car available to us, so we stayed at the other parents house. Thankfully we have rental coverage on our auto insurance.
We finally got home on Wednesday after another not so good night of sleep. I still haven’t heard back from the adjuster on the damage to the car, though he said he would be out to look at the car yesterday.
I am glad that we made it back for church last night. At church, we finished watching a DVD on the Star of Bethlehem. It reminded me of the greatness of God and how he cares for every detail of our life.
Though I am still tired, I got a good night of sleep, but more important I am reminded of how good God is and how he takes care of every detail of our lives and he will take care of our needs. (Right now a friend is cleaning our our driveway with his tractor). I can rest in peace that God will take care of our needs.
