Jan 20, 2012

Business as usual

Oh my ... just realized it's been 2 weeks and I've not updated.  Well, you'll be happy to know that's because we've been busy living life. 

After the marathon hospital stay, the scare with the fever, the borderline pneumonia, my broken (and now fixed) tooth, a personal health issue (still unresolved), the stomach bug creeping through the family members (Manny currently has it) ... well, let's just say life is "back to normal". 

Manny's PICC line was put in on Dec 23 so we're about to hit that month mark.  Some docs will change it out at a month but for him, we're planning to let it go as long as it can.  So far, so good. 

Today, we went to meet with the Motion Analysis Center (associated with the Muscular Dystrophy Clinic).  They are working on getting us a power chair.  That is not as easy as it sounds.  See, when a chair was first ordered for Manny, he was under hospice care and that did not qualify him for a power chair.  Nor did they think he'd ever be able to manage it.  But ... things changed with his proper diagnosis.  We have had his wheelchair for a year (and we LOVE LOVE it) but insurance won't pay for another chair for at least 2 more years. 

They gave us a loaner a while back to see if he could even physically do a power chair.  He was AWESOME at it.  He was sick as a dog during that time too and still he could master it.   Today, after not seeing the chair for almost 2 months, he was getting around everywhere in that chair.  He even mastered the 3 point turn (never shown how to do that, just figured it out on his own) and even parallel parking!  He's a natural for sure. 

So ... do we wait for the 2 years to get a power chair?  Or they had another option ... they could try to do used parts and we could self pay.  It would still be $2000-3000 roughly (which is high for us considering we're both self employed and I've been in the hospital for the past 4 months and Dan has been playing Mommy and Daddy roles).  We might be able to fundraise for it.  We might be able to get a donor for it.  We could also wait for insurance to come through.  We haven't decided yet.

While at the hospital, I decided to visit some of the floors and people we always see at the hospital. (I bought bags and bags of chocolate candy.)  I wanted them to see Manny when he is healthy, happy, full of life and feeling good.  We got to see basically everyone.  Each one had that, "OH NO" look on their faces as we walked in (thinking we were back admitted) so I would quickly say, "Just here for a visit."  And hand them the candy. 

Remember how I was asked to write up something about some of the mishaps we'd experienced in the hospital and I gave it to the nurse managers?  Well, apparently, there was a staff meeting on several of the floors about this letter.  I cringed when I heard this!  But apparently it was well received, was taken as good feedback and not complaining.  (Phew!) 

Since this whole experience, I've had TONS of ideas.  I want to put together a book or manual or articles or something about how to survive the hospital.  In my spare time, I'll get right on that!  (But I think it would be helpful.)  We'll see if I ever get around to it. 

In the meantime though, you know how I wrote a book about Cleft Lip and Palate?  Not because I wanted to write a book, but because I couldn't find one about it.  Well, I went looking for one for Manny about Muscular Dystrophy or Neuromuscular Disorders.  And guess what?  I could find ONE.  It's many years old and is about a boy with his dog and how they get through a day together.  Fine book.  Just not what I'm looking for.  I want a book to explain to Manny, to the kids, to the kids' school, to neighbors, etc what Manny has and what he deals with medically, socially, emotionally, etc.  And it just doesn't exist.  I contacted the MDA and they have 3 booklets for kids... she brought them to me today in our meeting to see them.  They're fine.  Still not what I'm talking about.  How are there only 3 booklets and one book about this subject that can be found? (Disclaimer:  I'm sure there are more somewhere, I just cannot find them.) 

So guess what that means?  That's right ... soon there will be a book featuring Manny and Muscular Dystrophy.  What's cool is the local MDA service coordinator is very excited about this project and is offering to help us get the word out.  Now I just have to pull it all together.  (Again, in my spare time.) 

Now changing subjects to Kaley ... I last mentioned that she was having some follow up tests to some "funky" test results.  The good news is, 2 of the tests came back just fine.  (Relief).  And there was only one thing still "off".  The recommendation is that she go see a GI doc.  (I happen to know a few with all this mess with Manny's story.)  I will keep you updated on that as we get the results. 

Finally, Manny is going to the NIH in Bethesda, MD.  They are "THE" premiere diagnostic people for Neuromuscular Disorders.  We're scheduled to be seen on Feb 13.  And while there, we're going to do some lobbying/advocacy for Cure CMD.  I'll be giving a speech at the Social Security Administration and the National Offices of Rare Diseases.  So... Manny Goes to Washington! 

So like I was saying ... nothing going on around here.  Just business as usual.  :)  


  1. Thanks for the update!!!! So glad that its business as usual and you are HOME!!!!! :) I know how good that feels!! :) Prayers for the right decision on the power chair and for Kaley. Excited about your book! I know it will be awesome! You are so amazing! I love how you can write! I wish I could. Can't wait to hear about you and Manny in Washington! :) Great that he can go to the premiere place :)

    big hugs,

  2. Becky Browder NeustadtJanuary 22, 2012 at 4:45 PM

    Yes, thank you for the update! Wonderful that you are operating from home. Manny and Mama go to Washington. That is perfect. You are so gifted - so eloquent - even when times are tough. Especially when they are tough.

    You are awesome, Beth. God bless you and your family.