Written by TJ and Jaime | 24 August 2010

Jaime gave Nora a strawberry on Sunday and she almost didn't get it back.  I guess Nora really likes them!  Nora is so good now with her secretions.  We have less and less choking incidents now which hopefully means less aspiration pneumonia in general.  When Nora's mouth fills up, she usually tells us by either gargling (which she thinks is really funny) or she just pushes it out of the corner of her mouth.  She's getting to be such a big girl now.

The pool arrived today.  It's unceremoniously parked next to the house on a trailer which is why there are no pictures.  The crane will come pick it up on Wednesday and I will have the time-lapse running for that.  The somewhat bad news that we are scrambling to correct, is the pool lighting.  It was supposed to come with a multi-colored LED light.  Well someone or somehow that got screwed up and it doesn't have any light at all!  I've been leaving messages for Hayward, Pentair and Jandy lighting to try and see if they will discount or donate a light for us.  These lights are not cheap ($500-800) so adding this onto our already over budget project would really hurt.  The good news for these companies is, they can get free advertising since WVLT will be doing a news story on the pool once it's complete.  It's a win-win....  I just have to convince them of that.

Jaime is all done with all the preparation for the Picky Chick consignment sale.  We printed up these two banners (banner Gwendolyn,  Banner Nora) to be put up at the special donation proceeds sale on Wednesday.  Hopefully Jaime's stress level will go down a few ticks.

Written by TJ and Jaime | 22 August 2010

I uploaded a new video of Nora's driving this weekend.  Sorry that she's not exactly dressed to kill in the vids, but it's humid here so we keep her stripped.  We are using a few different options to assist Nora's ability to control her chair.  She seems to be making little progress but we don't expect too much.  It's really just a fun play activity for Nora right now and that's what it should be at this stage....so they tell us.

More Nora Powerchair

Jaime's Mom and little brother are slowly making their way to Knoxville for a week long visit.  Hopefully we can keep Cole [Jaime's 11 year old brother] out of the heavy machinery in our backyard hole area.

We got our super cool pool umbrella delivered today.  It's as nice as a $2000 dual-umbrella can be I guess.  The bad news is our Microwave took a crizzap on us so Jaime has been sterilizing Nora's stuff using the old-school pot-o-boiling water method.  We took an educated guess as to what part broke in the microwave and ordered a replacement.  I kind of thought microwaves ran on wishes and magic so we must just be getting $154 worth of pixie dust.

And THANK YOU to everyone to "liked" the picky chick consignment sale.  Gwendolyn Strong Foundation 200K for SMA has WON!  We are thrilled and so thankful for not getting our butts kicked.  More details soon.

daddy out

Written by TJ and Jaime | 20 August 2010

Surprizingly nothing really happened on the pool work today.  They came out really early and put some rock down in the hole and stamped it.  That was it for the day.

Nora did have some work done today though.  She got one of her scheduled vaccine shot in her little leg.  Nora's nursing company case manager came out with the syringe.  I left work a little early to be there as well.  We put Nora on Bipap and PulseOx to prepare for the expected plummit of her vitals as she holds her breath (she does that when she has a big cry).  Elmo, Big Bird, Bert & Ernie and B.a.bs (the Build A Bear Bunny) were there to lend a hand as well.   When the shot came, Nora did cry but Elmo started dancing and really helped lighten her mood.  Nora was back to her usual self in less then 10 minutes.  She's such a rockstar! so I layed with little rockstar and watched Phineas and Ferb until Jaime came home.

I don't take the ability to do these shots at home for granted.  Not having to expose Nora to a doctor's office germs and all the planning involved with transporting Nora and her equipment is priceless.  Home nursing has made such a positive change in our lives.  It's amazing to think back at how we struggled for so long before Maxim and the famous Nurse Kim entered Nora's life. It's frightening to think about what would have happened without it.  Daycare booting us, and one of us having to quit work, and how Nora would probably be sick so much more often....or even worse.  Ohhh got a bit dark there.  Anyway - exciting weekend planned - stay tuned!  We have to show you all the progress Nora's been making with her powerchair.

Daddy out.

Written by TJ and Jaime | 19 August 2010

The pool destruction started a few days early.  They showed up today and we did the final measurements and found out the ground slopes way more then expected.  So we were forced to decide to dig down almost three feet on one end or build up three feet on the other.  I opted to split the difference.  So now we have this huge hole for the next 4 days until the pool and crane arrives.  It really looks like crap right now and I'd be lying if I said Jaime doesn't have second thoughts.  I know we are way too far into this to back out now.  We really hope this turns out spectacular for Nora's sake.  *fingers crossed*

I also added a video.  Jaime's co-worker Robert (there, I gave you props for the great idea) said we should get a time-lapse video of the entire process.  So I have almost 10 hours of work in a 1 minute video and I even make a few brief  1 second appearances - looking all scared and confused.

I also posted the long awaited video of Lucy Lunt.  She is about three months older then Nora.  We met Lucy at the SMA conference and Skype with the Lunts whenever we get the chance.  Lucy is so adorable.

Pool construction - backyard destruction Part 1 - 1 min

Here is a video of Lucy! she is Nora's best friend