Scott - The Update

Someone mentioned to me recently that I hadn't really been talking about Scott in my blog posts recently. I got to looking and thinking about it and they were correct.
I haven't been purposefully avoiding the "Scott subject" but things have been...well... interesting as of late. Rest assured there is nothing "crazy" going on. Scott is home and for the most part doing fine.
I don't want to come here night after night and report the same stuff. So for one time only I'm going to give you all a glimpse into what Scott's world is like. As always there are some things that I don't write about as it relates to Scott's on-going battle but here's the real story as best as I can tell it.

Scott's Multiple Sclerosis (MS) seems to be ramping up with each day. It's almost like the moment he became disabled the MS found a way to creep in and take over.
Scott's legs are so spastic that I have to use all my strength to pry them apart. Getting Scott ready for bed requires the use of 4 special pillow just for his legs. Each one performing their special task. All needing to be placed just perfect so they don't cause additional pressure sores, or make the spasms in his legs worse. Fortunately, once we get things positioned perfectly it seems like he can make it through the night.
Scott spends most of his time in bed. He's able to get up and be on the sofa or go out (as you all have seen) but for the day to day he stays in bed until around 3pm. We were getting him out of bed earlier (noon-ish) but with the bed sore battle that has been raging (we're winning) we're giving Scott a little more time in bed laying on his side. Once the sores are resolved a little more to my liking he'll be spending more time out of his room. Back to the comfort of the living room.

Scott has two therapy sessions a week right now. Those are quickly coming to an end. Our insurance has run out for the year (for therapy). He's only got 5 more PT visits and 6 more OT visits. I'm not sure quite what we're going to do once those run out. His therapy is still so very important. I can't imagine how quickly things will fall apart when he can't go. I know I'll find a solution; negotiated sessions at his current facility, private therapists to come to our house, and I've filed a "special" request with the insurance company.

Scott gets lots of time to play with Kate from the comfort of his bed. They play ponies, watch shows, sing songs, do puzzles and like today share blueberry pie. When Scott's got his wheels on they play bouncy ball in the living room and Kate loves to have her Daddy "chase" her. Poor Scott get worn out going from one side of the house to the other.

As you've seen here we do plenty. We were at Red Lobster this week, the Laudick's were here for dinner tonight (we all enjoyed the weather outside before dinner), we had dinner out with friends last weekend. There is always something going on around here. It's exhausting for Scott. He tires very quickly and if you're with him you'll notice his speech is the first thing to go.
His lung muscles are very weak (hence the need for the trach). So as he fatigues he can't force quite enough air past the trach and over his vocal chords. Since this blog is my safe place I'm going to admit that I'm beginning to worry about his breathing. While resting he's just fine. But as I said when he tires he really starts to struggle. This is something relatively new that I'm having to adjust to. I've been planning and strategizing in my head how to best handle a respiratory event to make sure I'm prepared. Obviously, the first line of defense is to prevent Scott from getting that tired. Which I try to do. Things just seem to progress so much faster these days. So, I plot, plan and prepare. Consider me a Girl Scout, only I'm so NOT a Girl Scout.

I can't say that I'm terribly surprised by the progression of Scott's diseases. I've always known that life could be filled with these inconveniences. But they are just that inconveniences. Stupid, pain in the ass, little things designed just to frustrate the fuck out of us.
The rest of life is good. It's rich and full of fun, love and wonderful moments. It's little things like the conversation I heard the other day while I was pretending I had to go potty (don't judge K wouldn't leave me alone, I needed two minutes alone).
Kate - sneezes
Scott - Bless you Katie.
Kate - Thank you Daddy. You be the horsey now.

or

the painting that they did together the other night while I made dinner.
So many wonderful things in a day. I can't possibly put them all here...

BigDan  – (August 6, 2010 at 7:03 PM)  

How about we come out Monday or Tuesday evening? What works best for you guys?

Anonymous –   – (August 6, 2010 at 11:56 PM)  

Hope you guys have a good weekend.Keep fighting the good fight.Would oxygen therapy help?Maybe it would give the lungs some relief!As always,love and many,many prayers Nancy and Gary

missy dappen  – (August 8, 2010 at 7:35 PM)  

Thinking about you guys all the time. Hope the highs are the highest and lows only mere dips.

We hope to make it out your way soon- will let you know when we do. Till then, we send our love via Kathy and Dan (that's right, I'll use you guys) ;)

LOVE the 3 Chicks and a Dude so far. Beautiful pics!

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