New nurse for Nora

So since Nurse Kim is out on a medical issue for the near future, we now have Nurse Jennifer for the night shift.  Nurse Jennifer is a mid-westerner like us, so we speak the same language.  She seems to already be in love with Nora and Nora is already smiling back at her too.  It's going to take her a few days to get used to all the machines and protocols we have for Nora.  So far she's doing well and asking great questions.  We also hope, as her confidence grows, she can relax a bit.  She has spent her first shift literally standing poised for action next to Nora's crib.  We would prefer she be this way though - wouldn't you?

TriStander for Nora

So the big news of the week is Nora's new stander.  A stander is a nifty contraption that allows Nora to stand supported.  It should help stretch and possibly help put pressure on the joints and tendons to help fix some of Nora's hip alignment issues.  It will also give Nora a new perspective that she may enjoy.... or not.  We had a prescription for the Tumbleforms Tristander but that darn thing would have cost insurance around $4,000.  Jaime did some web surfing and found one in Tennessee for $400.  It was used, but it included the optional $1000 tray so it was too good to pass up.  It's effin crazy how much this stuff costs!  Charging $1000 for that tray is just ridiculous - you can see for yourself.  It's a piece of plastic with four wheels.

So, Jaime drove to Crossville, TN to pick it up today and was shocked how good of condition it is in.  The family that sold it took really good care of it.   We are trilled and not having to ding insurance (we are always concerned about Nora's lifetime Max for insurance).  So they get $400 and we get a great stander.  Everyone wins!

It's going to take months to get Nora used to the stander before she can go totally vertical.  We are going to try and put Nora in it on Thursday night at just the horizontal position.  We will let our Physical Therapist review everything before we attempt any angle.

There is a picture this update of Nora and her crazy hair.  It's so funny.  Her hair is just a disaster 90% of the time, and we love it.  When you see Nora with a nice hairdo, it's not by chance - it's work. :)

Meet Marie Dorigny

This is one if those stories that is hard to write completely out because it has a thousand branches.  I'll try and stick with the trunk of the story so it won't turn into a novel.

Jaime and I got on one of those Nora should be covered by Medicaid regardless of our income kicks.  We have often explored this, and it always ends with some angry calls and tears [Jaime] and swear words [Me].  This was no exception.  So I called this Tennessee law support number someone gave us on another call.  It's usually handed off like "call this number...they will help" which incidentally is what we were told about the first number...that didn't.  Anyway, the TN law lady immediately said "how many people are in your household? .... their ages" and the usual "what is the last name if your baby Mr. Gooden".  I answered them all and then she said "what is your gross monthly income?" I explained that I just had a question so can you just answer it for me?  She said "not without your income".  I said "what is the number that is the maximum I can say and still get my question answered?"  She said "$2140 per month".  I explained that I was over that amount and she said "well. then I cannot help you".  So I got a little pissed and spit "you mean I make too much to even get a question answered!"  She said "Yes".  So *super pissed now* I said that I would call her back once I smoke a bunch of meth and lose my job".  She asked if I was done venting and I hung up.

I called TN Justice League next.  That said oddly enough that there was a National Geographic photographer there and is doing a story on middle class and health-care.  Basically how many services the middle class cannot use since they are mostly all income restricted.  It is kind of an anti Tea party article showing how the middle class would actually benefit by this new health-care plan in this respect

Long story longer, Marie Dorigny showed up on Saturday to spend the day with us and take pictures.  She's a French free-lance photographer working on the story which will actually appear in the foreign issues of GEO magazine.  Marie is a wonderful woman!  Having her for the day was an amazing experience.  She has so many stories mostly because she's been everywhere taking photos.  She recently was in Iceland and before that Afghanistan!  Click on her picture and you can see some of her portfolio.  Meeting her was a once-in-a-lifetime experience.  It seemed ridiculous that a woman who took a back-alley photo of a child making a Nike Soccer ball in India, is now in our living room.  We would have loved to keep her for weeks just for the conversation.  I think her being French actually added to the experience as well since she had such a different perspective.... and pronounced Kentucky - Kent-a-Key.  She told us so much about the fantastic national health-care system in her country (which didn't sound at all like the negative spin we've heard in the states).  We don't know if our part will make it in the magazine but we really don't care, since it was totally worth every second.   Oh, and she even gave us some pictures.

Playing in the grass

Nora usually hates the grass and cries immediatly when it touches her.  Jaime hasn't given up though and keeps trying it over and over again.  Tonight her work paid off.  Nora played in the grass for about 10 minutes until the bugs found her.  She really enjoyed herself as you can see.

So we night have a connection to get a stander device.  We contacted someone in Tennesee who has one in great shape.  It's a crazy looking contraption and it's going to be strange to see Nora upright by herself.

We had Aqua Therapy last night and that went great.... up until the therapist used bubbles... then took them away.  At one point early in the video you can hear Jaime exclaim as she can feel Nora really using her arm muscles to pull and push herself.  Jaime and the pregnant therapist were both in the water the whole time and I was sweating my tail off taping this video.  It was like a sauna in the therapy pool room.

Youtube Video or Nora's Aqua Therapy

FSMA Newsletter

The new Directions FSMA newsletter is out

You can download the Directions newsletter here.  Nora makes an appearance many times through the issue.  She's on pages (1,7,36,61,86)

Montana Grandma also has a large tribute on page 7.  As you will read, Grandma makes quilts for all the newly diagnosed children.