Written by TJ and Jaime | 16 August 2010

Jaime put Nora in our favorite hairdo today.  Jaime said Nora's not a big fan of getting it done though.  One of the best part about pigtails, is the pigtails hair aftermath.  It's the craziest hair ever and when Jaime starts laughing, Nora always follows along.  Nobody can get Nora laughing like mommy can; Bentley (our dog) is a close second though.

Jaime has been spending hours upon hours preparing for the Picky Chick sale.  We have lots of items to sell - it's a bit heartbreaking because most of the stuff is unused.  So many things we remembered buying in the excitement of our pregnancy.  I remember being in Babies-R-Us with a very pregnant Jaime deliberating over which Activity Jumper to buy and now, like more of the items, it sits never opened, with a price tag on it. Have I mentioned lately that SMA SUCKS!!!

While we are on the subject, we lost another SMA child this past week.  Jaime and I both took this rather hard because we talked quite a bit with Nicole after they were diagnosed.  Nicole had chosen palliative care for her little Annie as a lot of parents often do.  Annie lost her battle and we will forever miss her.  You can read their story here: Bowling Green Daily News. Nicole is on facebook, if you want to send her a message or some strength.

Also, as you see in the pictures, the pool install is imminent!  They dropped off the excavator today and may even start digging later this week.  We are excited and cautious at the same time.   There is a fear like with any big expensive project where the last minute things flex the project budget a bit.  For instance, we wanted a curb to go around the pool to make is as safe as we could.  I'm fairly certain that a powerchair at the bottom of a pool would void its warranty - we are more worried about the driver of said powerchair though.  Anyway the concrete people want us to do paver blocks instead of something they construct,  pavers = more $$.  Between this and our umbrella we are already pushing it a bit.  It's all good though.

Written by TJ and Jaime | 14 August 2010

Nora's Respirtech InCourage vest came in the mail today.  It was a huge box that had medical device written on it.  When I opened it there was like a suitcase and a wheeled cart in it.  That immediately impressed me - since it's the first real adequate carrying case we got with a product.  Most of Nora's other medical devices come as-is.  Like here is this huge piece and these hoses and this cord and this other thing and this other other thing (don't loose this) and this too.  So we end up with this pile of expensive equipment we have to find places for.  So un-boxing and installing on the little red headed girl was a snap.  I got it fired up in a few minutes after watching the instructional DVD (yeah, they thought of that too).   Nora is simply amazing how well she tolerates new things - even when those new things might cause her discomfort,  This being no exception, she started singing along to the machine right away.   I only had the machine at 30% and as you can see it was really shaking her.  We are so proud of Nora.

Enjoy the video and remember to turn your sound up for Nora's singing

Nora tries her new chest therapy vest

We ordered the shade umbrella for the pool today.  It was lots more expensive then we budget for but there weren't many alternatives to consider.  We wanted something that could be set into the concrete instead of having a 300lb giant plastic base next to the pool.  We assume at some point Nora will be driving her powerchair around the pool so a huge base would take up her racetrack space.  Since you are wondering, yes, we will be installing a curb between the pool deck and the pool.

One more week until the pool gets installed!

Written by TJ and Jaime | 11 August 2010

Okay I posted this new video of Nora showing off all her sounds!

Nora's Sounds August 10, 2010 on YouTube

Now we need a favor in return.

There is a children's clothing consignment sale in Knoxville called "The Picky Chick".  Jaime is going to be selling most of Nora's baby clothes and items.  They are going to waive their standard % fees so 100% of the profit we make can go towards a charity.  In addition, they donate the proceeds from their private sale to a selected charity.  They have accepted our entry for the Gwendolyn Strong Foundation's 200K for SMA campaign to be one of the charities - but there is a catch.  There are 5 other charities competing for this.  They are using Facebook voting to select the winner.  If you have a Facebook account, please  click the link and Like the "The Picky Chick Consignment sale" then click like again for Charity Nomination #5- Gwendolyn Strong Foundation entry.  Whichever has the most "likes" by August 20th gets the private sale proceeds for their charity.   So far we have 115 "likes" and the next highest is 51.

Please take 1 minute today and vote. Show your support for Nora by helping us out.

The Gwendolyn Strong Foundation, 200K for SMA is to accomplish this goal:  GSF created the "$200K for SMA" campaign in July 2010 to direct 100% of your generous donations to fund groundbreaking gene therapy research with the potential to treat SMA forever. We’ve partnered with FightSMA, who has a long-standing stake in gene therapy, to fund specific strategic portions of a promising research program at Nationwide Children's Hospital and The Ohio State University to help make a decade-old dream come true. One person and one dollar at a time. Together we can end SMA!

Written by TJ and Jaime | 10 August 2010

We had our good friend Jennie Andrews who has taken all the professional photos of Nora do another session with us.   We went to the University Gardens this time for some outdoor pictures.  The place was beautiful but the bugs were tremendous and hungry.  Somehow Nora didn't get one mosquito bite....maybe the SMA lack of muscle helps in this situation.  It was still warm out and we thing that contributes to a huge meltdown by Nora 1/2 way through the shoot.  From Jennie's past work, we know these shots will turn out great.

We are sending Nora's stroller out to be modified tomorrow.  We are having someone put trays on the front and back so we can carry Nora's equipment and venture further from the car and house.

Jaime thinks she is getting a cold so she's been masked up today.  I'm in this depression funk that I can't seem to climb out of.  Nora is totally fantastic though.