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Stephanie Price
tprice1111@embarqmail.com
Monday, Oct 6, 2008
Does anyone have a case of vivonex they would be willing to swap for a case of tolerex? Congratulations to The Akers family. I loved the exposure for SMA.

Shana ^Eden^'s Mom
Monday, Oct 6, 2008
That was Nick with Kevin and Emma was in the pool with Beth. I watched the first half and will watch the rest tonight. Loved seeing the Aker's family. What a beautiful family....


Angela Mifflin
angela.trick@gmail.com
Sunday, Oct 5, 2008
I just watched Extreme Home Makeover and what a blessing to see that SMA is on the news again. What excellent coverage! I dont think I remember that family at all. Brooke and Faith are beautiful little girls and an amazing family. Congrats to them and their new house. Did I see Nick Lockwood in the swimming pool? Im pretty sure he was in the show??? Beth was that him? I think Nick has Jacobs Max stroller? Just knowing Jacobs thngs are still helping other children means so much.
Hugs everyone. And happy birthday to all the children I have not got to wish to. Lizzy your sooo big and Jessica in Heaven I hope you got to dance and celebrate with all our angels. Shira your getting sooooo big! Love your attitude!
Ange

Sheila and Sky
Friday, Oct 3, 2008
Just wanted to tell everyone HAPPY FRIDAY!!! Brad Shira looks great and she is just too cute! Tina Hayden looks great, I love his garden, sorry to hear your all sick, I hope you all start to feel better soon! Lisa you have some very cute girls!!! your little Kathryn is a doll :) Hugs Sheila

jennifer Minter, mom to Virginia
Thursday, Oct 2, 2008
Lisa, she does drive with her head to the side like that because of the saliva issue. That was the problem we'd had with the regular chair positioning because I was always having to suction her.
Hali, you can use any kind of switch with the scanner, so it wouldn't necessarily have to be placed between the knees. We just put it there because it seemed to be the most stable positioning for her. You could place a microlight or even an infrared switch beside her thumb and do the same thing.

Tina MacIntyre
Thursday, Oct 2, 2008
OK, Come ON!!! I know I'm not on the boards or chat as much as I used to be but, Lisa, I had no idea you had another beautiful girl. I should know that! Congratulations on your trio of beauties! Ashley looks great. So big. And I see lots of mischief in Sarah, perhaps like Lauren? (oh those Geminis!)

Dawn, do you need flexible catheters or would Yankauer Fine Capacity suction tubes work (reference 504001). I have a lot of those as they are too fine now for Hayden.

For anyone else in need, I have Petite Comfort Flap for the contour nasal mask (ref. 302250) and 2 Cushion Flex Child Masks for the Cough Assist (ref. BLD-8803).

OK, so Mister Hayden is giving us a run for our money. He was sick for 2.5 weeks, had about 5-6 good days and has now been sick again all week. In fact, Lauren and Hayden have been off sick all week, and I'm coughing too. Great bunch we are. The river of mucus runs through here.

Here is Hayden in his Wish Garden, which has grown tons in a year!

Hali Harapchuk
Thursday, Oct 2, 2008
Canada
Hi Lisa:

Great pictures!! I love seeing pictures of the kids!! Kathryn is a big girl already. WOW! And she still looks so much like Sarah. Ashley looks great!!

That would be neat but Kaitlyn can't even move her knees enough to rn a switch like that. She can just use her thumb and pointer finger.

Andrea Smith
kanga1102@bellsouth.net
Thursday, Oct 2, 2008
Brad ~ tell Shira that I think it's incredibly cool that she likes Barack Obama! Not to get too political here, but I'm so psyched to think he could be the next Prez of the US in a few short weeks. (((HUGS))) to your sweet girl!

And happy belated holidays! I'm terrible at remembering...

Dawn Daws
ddaws@cfl.rr.com
Thursday, Oct 2, 2008
Does anyone have any 10fr suction caths that they could spare(I mean like 10 or so)? If so, please email me!

Thursday, Oct 2, 2008
DECORAH, Iowa - Meet Courtney Smith of Decorah When Courtney was just a baby, her parents noticed she had some difficulties. Courtney was diagnosed with a neuro-muscular disease called Spinal Muscular Atrophy.

"As the years went on, it's progressed and she's got a lot of respiratory issues like, just a common cold will take her as far down as to be put on life support in the PICU," said Courtney's mom Kris.

The ten year-old can't even swallow her own saliva. Her parents and helpers work around the clock to help her lead as normal a life as possible, but this summer created a whole new challenge.

"I seen the water and looked at Bill and told him, we need to get out of here," said Kris.

Like many families, the Smith's were devastated by record flooding. Their house was ruined, but the Smiths used the rebuilding opportunity to modify their house and make it more user friendly for Courtney.

"We took out a fairly large construction loan to do that," said Courtney's dad Bill.

But just as things were looking good, a whole new problem hit.

"A few weeks ago, I unexpectedly lost my job," said Bill. "I had no indication what so ever that it was coming. We've got 2 mortgages and then the construction loan, and of course there's medical expenses."

"we need to figure out a way to make our house payments and stay here. Courtney can not live in an apartment," said Kris. "We reach a point where we don't know what the outcome's gonna be."

But they say that just like their daughter does every day, they must keep fighting.

"Whatever it takes to do it."

The Smith's say they're struggling to find new jobs and care for their daughter. Bill's sister Karen is raising money to help them get through this tough time. They say and little bit will help. If you would like to help out the Smith's, donations can be set to:

Bill and Kris Smith

719 Decorah Ave.

Decorah, IA 52101

The Smith's can provide a receipt for tax purposes if needed. You can also learn more about Courtney's disease SMA by clicking here.

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