Today is one of those days where everything is difficult. I have been totally exhausted for weeks. I went to the doctor a couple of weeks ago and found out that I have bronchitis. I took the antibiotic for 6 days, but I had to come off of it because of yet another allergic reaction. I was then put on steroids, which my body did not like either, but I was able to finish the course. So on week six, I am still not better. I am having trouble catching my breath and I have no energy. I know I am whining, but this lack of energy means that I have to rely on Chuck more and more. He is always busy with work and taking care of us, I really don't like it when I am unable to do more in the house and with the kids.
Besides the normal doctor appointments, I have been working on paper work for out taxes as well as BCMH. It is truly amazing the amount of money we spend on health related items. We do have insurance and some help from the state program called BCMH, but even with that, we still average over a $1,000 of out of pocket expenses excluding our premiums. Many people are in the same shoes and we all struggle, but when I see it all on a page, it is overwhelming. The debt that we have due to our medical expenses is stressful as well.
As an update on CJ, his MRI was normal, thank God. He will see his pediatrician soon to discuss managing his migraines. We have also discussed having him go back to see the psychologist that helped him over the summer.
I think we are closer on making a decision on Elizabeth. She continues to fall without control of her hands. She has suffered a spine concussion as well as a head concussion that caused visual disturbances for a week. We don't know when she is going to fall but there have been some frightening consistencies: an electric shock feeling, loss of control of her body which we think is causing the falling, and traumatic injury when she does fall. The other symptoms are disturbing as well which include numbness in her chest and neck, difficulty swallowing, intermittent buzzing in her hands, dropping of objects from her hands and the constant pain. It looks like the only doctor that we can do anything about it is not at Children's. It is a big decision and the added uncertainty of a child having a surgery at an adult hospital makes it more difficult. I also understand that the doctors at Children's cannot and will not condone such a surgery.
With this I have asked God to be "a lantern to our feet." I know He will show us the way I just have to be open to hear it and accept it in faith. It is proving very difficult to discern. Please pray for us