We're back from the UW visit. Dr Weiss confirmed that it is not any of the obscure diseases that he was testing for. He said the diagnosis is progressive bulbar palsey which some say is connected with ALS, others disagree. Dr Weiss believes that it will progress into ALS. Right now the only part of Tom that is affected is his speech and swallowing. He did give us a plan for attacking the saliva management and we will try plan A for 2 weeks, followed by plan B if necessary and if those don't work we will go straight to Botox--which apparently greatly reduces the amount of saliva the body produces.
Next Tuesday we will meet with Nurse Cathy who will give us more instruction on the disease and help us with strategies for dealing with what we need to deal with. We're also being transferred to the UW speech therapy. We've had the most wonderful speech therapist at Evergreen and will hate leaving her but apparently they have more high tech stuff to help Tom with speech so that is a good thing.
Tom is starting to grasp that this is not something that will get better UNLESS God sends a miracle which He's perfectly capable of doing. We just want His will in our lives and if this is what He is allowing us to go through then we are dependent on Him to help us navigate it. It's hard for me to know how hard this is for our children--they love their dad so much and are so supportive. I am very thankful that we are a close knit family and know that we will grow even closer (if that's possible) through this. There are so many unknowns out there so once again we just have to stay focused on today and what we can do to make it the very best for Tom we can.
The doctor's visit was not as hard as I thought it was going to be. I guess we've been hearing the term ALS for a couple of months now so it wasn't something new. The doctor was very gentle and we appreciated the way he kept bringing Tom into the conversation (Kemp really noticed that). It was helpful to have Kylisa and Kemp with us. What a precious gift family is!
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Hey Cathy!
ReplyDeleteI'm so glad you are taking the time to post your thoughts and feelings on this blog. You are such a saint and your writing is so wonderful and insightful. I just wanted to let you know that you and Tom are definitely in my thoughts and prayers everyday. If there is anything I can do for you please don't hesitate to ask... I'm really just right down the street. Soon I'll be finished recording my new record and will have lots of free time...April and I should just come over to hang out for a bit. Anyway - that offer stands and I wanted to send you my love and support.
xoxo
Love,
Rocky
I have been away from a computer for a couple of days and couldn't wait to get back to your story. While the diagnosis isn't great I hope it gives each of you some comfort to at least know. Our most anxious days, the most difficult days have been those when we didn't know what we were facing with Gary's health. There was a sense of releif once we knew what the battle was. The fear of not knowing was far worse for us. During those lonely days it was our faith alone that got me through. I know you know what I am talking about. I think what you are doing here with the journaling is not only theraputic for you it is also an avenue for all of us to say things we haven't otherwise had a chance to express. So, thank you!
ReplyDeleteSo Tom...I was thinking (ouch!)...is there any chance you could be pregnant? I know that sounds impossible but read on...When I was pregnant I produced so much saliva I couldn't even swallow it fast enough. I would finally have to resort to that lovely ladylike event called spitting! No one ever told me there is a right and a wrong way to spit. I never mastered it...it seems I always had a trail from my mouth to my chest. Really not a good look but it accomplished the mission...get rid of what you cannot swallow.
Now, I know it seems like a stretch for so many reasons that you could be carrying a little one but I'm just trying to help! If I have any more good ideas I'll pass them along, (unless of course you'd rather I keep them to myself!) In the meantime, you are always in my thoughts and prayers. We know miracles happen everyday. Please keep the faith, keep smiling, and let me know if a baby shower is in order!
Love you lots, Dee