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May 4, 2012

So much has gone on in the months and months it’s been since I’ve updated. Some of them good, some not so good but all of them have had impact not just for Queenie but for us, too.

1. Queenie and her neuro decided Cytoxan wasn’t doing anything for disease progression. The MS marched along as it does, leaving Queenie nauseous and exhausted a lot of the time. For now, monthly methyl prednisone infusions seem to help so we are sticking with that for now.

2. Her power wheelchair is on the fritz yet AGAIN. This time the motor that was just installed went defective within days and the company doing repairs doesn’t seem to understand the urgency to just ORDER THE DAMN PART. The Service Manager and I have been having some heated chats and I think he sees things my way now. Good thoughts for a quick repair would be much appreciated.

3. Our little old girl dog, Sava, crossed the Rainbow Bridge a little more than a week ago. That was harder than we realized it was going to be. She was 17 so it wasn’t unexpected but still….just so hard.

4. Queenie now has a (mostly) full time aide. Kathy is our angel and saving grace. Not only does she give her fantastic care (and it goes without saving she’s solely responsible for me getting a lot more sleep now!) but she also gives Queenie some much needed companionship. It saddens us to know that Queenie’s friends have pretty much abandoned her, with not even so much as a Christmas card. Kathy and Queenie have “clicked” and we are eternally grateful for her.

5. Queenie’s approval in the PA Independence Waiver program has not only enabled us to have Kathy but also to get the bathroom modified yet again. We found out after our last construction project that just because the contractor says something is ADA compliant doesn’t mean it will work. We’ve been working with United Disability Services to come up with a plan for the bathroom that will give her the space AND safety that she needs. Demolition begins this Monday…. Ahhh, the sound of sledgehammers and circular saws, the taste of drywall dust in my nose, the fact that we won’t have a working bathroom for about two weeks …well, all of it will be worth it. I hope.

That’s the update for now…more to come….life is ALWAYS full of changes!

Queenie and Domino say hello to all…


2 Comments leave one →
  1. August 10, 2012 11:39 PM

    Sorry to hear of pooch, I am thankful that you started following me and allowing me to take part in your blog. Very glad that you have a nurse, for her and that you get some much needed rest I am sure. I know that my care giver when I was very ill needed lots of rest they did not get. Sharing the weight is always a good idea.

  2. Patrick permalink
    May 13, 2012 11:57 PM

    Oh yes! Friends do start to disappear and soooo true about compliant modifications. We learned to require that Patti be the model for all modifications we made. Sink, grab bars, etc all installed to her height only not ADA guidelines.

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