Back on 8/15 we had another neurologist appointment. Kelly knew nothing had changed, but we were still hoping for a good report. The Dr wanted us to see him before the scheduled EMG to see if the test would be needed. The Dr decided the test was not needed but not for the reasons we hoped. Kelly's physical assessment was markedly worse than it was 2 weeks before. :(
He decided that we needed to do several months of back to back IVIG therapy. (This really wasn't any surprise to me after all the research I have done). I was happy that we at least had a direction to go in.
His appointment was on a Friday so we knew it would be the next week until we heard from the infusion center to set up his treatments (3 days in a row 4-6hrs a day). Unfortunately when we heard from them, the soonest they could fit him in was the 10th of September.
This will make it 2 months from his first treatment. I was really upset by this at first. I just couldn't understand how we were to wait so long and risk Kelly getting worse.
Once I calmed down and thought about it, I realized there really wasn't anything we could do about it. If we wanted to change locations or even do home health we would have to wait for insurance to approve and it still would have been around the same time.
1 more week to go and it can't get here soon enough.
For the most part Kelly is doing alright. We learned the hard way that he has to be careful and not overdo it. Last week we had our daughter's open house at the high school. He decided he wanted to go.
Open house consisted of spending 10min in each classroom. We had 5 minutes to go from class to class. This time frame was hard on him. By the time we left the school his legs didn't want to work anymore. Needless to say the rest of the evening was rough on both of us.
I will end with sharing the blessings we received this week end. Two of my work family donated much needed items to us! We now have a walker for those times when his legs aren't cooperating enough to use his cane. We also now have a great fold up wheelchair! Now when we go places that require a lot of walking he can ride in style! I can not express how much I appreciate all the love and support we have received over the last several months!