We went to see Dr. Turnbull again on Friday. He asked if Jack noticed any changes after his IVIG treatments and Jack said he did not. He did his grip strength and that was about the same but then he pushed on Jack’s extended fingers and told him to resist but the doctor could easily push his fingers down on his right hand but not on his left. He said that the flexors are first to go and that is what has gone on his right hand.
Jack said that his walking is getting worse, he cannot change directions quickly and he has fallen a few times. He drops things quite frequently and his writing is getting worse.
The doctor said there was no more testing that he wanted to do so he said we’ll start him on the Rilutek which is the only medication that they give to ALS patients. He said they would do regular blood work for three months to make sure that his liver is not getting damaged from the medicine.
He was about to leave and I said, “so are you now diagnosing him as having ALS?” and after a lengthy discourse he said, “well if you want a number then I’d say 95% sure it is. “ He never likes to say 100% because there have been the odd case where a person has had a rare virus or for some unknown reason the symptoms have gone away, so he does not want to say it for sure because some people may make drastic decisions based on that diagnosis and then if it ends up not being ALS ....
Well, he had said enough to confirm it in our minds. It was not shocking to us because we have basically known in our hearts already that this would be the diagnosis.
We are not asking “why?” but just asking for grace and strength for what lies ahead and it is our hope that we may glorify God throughout this trial that He has given us.
We are overwhelmed with the prayers and love shown to us from so many and feel humbled by it all. The school board has been so understanding and so exceedingly supportive and we are very appreciative of that. We can only live one day at a time as it is too overwhelming to let our thoughts go into the future but we know that God who has sustained us so far will also supply all our needs tomorrow and all the days after.
God is God and God is good.
Jack and Lena