Tidbits

I know you have been patiently waiting for me to fill you in on how Sarah is.  We spent all of the morning and most of the afternoon at the Mellen Center in Cleveland with a neurologist who is going to oversee Sarah's care. So far, Bob and I are both impressed with her.

Sarah ended up spending 3 days in the hospital receiving a bout of steroids this weekend. There was a lot of b.s. that went down between doctors and getting her the care she needed, but to be honest I am too exhausted to even go into any of that.

After reviewing Sarah's case today this doctor thinks that Sarah MAY have something called 'Devic's disease' (also known as NMO - for those of you who like to google this stuff), Devic's disease appears to be an offshoot of MS. It affects mainly a person's vision, but can affect most of the other areas that MS does such as bladder control and paralysis. From the little that I have read, this disease seems a little bit scarier to me than MS does. 50% of patients with Devic's disease either end up paralyzed or blind within a 5 year period. People can also die from Devic's disease (at least from what I have read), but I am not putting too much stock into that. I will be doing more research on that though to be sure.

Her doctor gave us an ugly drug to try and help this case of vision issues. I haven't given it to her yet. I am scared to. It is controversial and the side affects are Avonex type issues with liver damage and an increased risk of getting cancer.

Sarah's spirits are low today. She had to get more blood drawn. Her arm is hurting from that, and her opposite arm is hurting from her IV this weekend in the hospital.

From what I understand after her doctor's appointment today, hospitalizations may become a routine part of her life if she does indeed have this Devic's disease (although not as frequent as she has been). We should know in the next couple of months if this is what she does have - she will need to have another MRI, blood drawn again (when she has been off of her steroids for a bit), and possibly another spinal tap.

We were told that we can no longer let her stay at home when she shows signs of eye regression. We need to act on it the day it happens. Sarah's eyes are now 20/200 & 20/100. It is taking much longer to get them back to where they need to be. Her neurologist would like to see her get to 20/40 or 20/50 in each eye.  Both Sarah's ophthalmologist and her Mellen Center neurologist told us that some of her vision loss is now permanent. It is just a matter of seeing how much.

It really seems like every time I think that things cannot get worse they do. I am not sure that Sarah even understood the conversation today between her doctor and Bob and I. How do you even being to explain all of this to a 9 year old? Do you even attempt to do so? Will it just make her worry more or does she have a right to know everything about her care? Those are questions to be answered another day.  I don't know what I think or how to feel anymore. I do know that I am exhausted. We all are.