Nora's pigtails

15 July 2010

Ever since Nora's hair started to get really long, Jaime has been itching to put her [Nora] in pony tails.  She finally felt Nora was ready for the tails.  I didn't see what the big deal was all about, until I got to see Jaime's work.  Nora looked so cute and grown up.  Mom [Jaime] knows best when it comes to Nora's hair.  Jaime also made a strawberry cake and let Nora taste test the frosting - hence that picture with frosting on her face.  It was just after Nora's nap so she still has a little mark from her BiPAP mask.  Now that Nora is getting better at managing her saliva, we've really started experimenting with tastes.  It's good that we can at least share a little of what normal children get to experience.

Our pulmonary vest looks like it might get ordered this week.  It's been stuck in the "insurance zone" for the last two weeks due to it's price no doubt.  At $15,000 it will be one of the more expensive items in Nora's medical collection.  This will replace out vibrating wand we use for airway clearance treatment (Chest PT) twice a day.

Jaime's new bow creation is a snail.  Neat huh?  I have no idea how she makes them but I know it involves baking ribbon in the oven.  This will become Jaime's fallback career I think.

and last but not least.  Jennifer Goodson won the Ponderosa Challenge so she earned a special shout out by Nora.  Jennifer got the right answer which was a zebroid or zebrule.  Jennifer is another Type-1 SMA Parent of Jacob who I actually got to meet at the 2010 SMA Conference.

Comments  

 
0 #1 Molly Howsden 2010-07-14 22:05 This is my 1st time commenting but I've been following your sweet family since we came into the SMA family. We have a boxer and I love seeing your sweet boxer's pictures.
I just wanted to say the first picture of Nora is my most favorite EVER! I LOVE THE PIGTAILS!!! She is absolutely beautiful. And I would absolutely BUY one of Jamie's bows. They are amazing! The snail is adorable.
Thank you for being so open and sharing your story. Nora is simply gorgeous.
Molly Quote
 
 
0 #2 Montana Grandma 2010-07-14 22:32 Nora is "stylin" with her fancy hair do and pretty ribbons. Great work Jaime. And looks like you both are having fun coloring. Much love and hugs to all of you. Quote
 
 
0 #3 Aunt Naomi 2010-07-15 04:12 So cute, mommy and Nora crafting together! Quote
 
 
0 #4 Mary Kay Dreikosen 2010-07-15 05:29 I will simply have to print the pigtail photos to share with Great Grandma. She really enjoys the updates and photos of Nora. Sooooo cute! Quote
 
 
0 #5 Nurse Kim 2010-07-15 07:41 Completely in love with the piggy tails! Next we can get the one sided ponytail like Cindy Lauper had back in the 80's. I am sure that if anybody can bring that back in style… its Nora.

And your cake was FANTASTIC which is saying alot because I am normally not a cake fan. Quote
 
 
0 #6 linda Miller 2010-07-15 20:27 OMG Nora looks like a prettiest doll! Do you have her look at herself in a mirror? Her eyes and her looks are precious. Love the snail Jaime…Do you wrap the ribbon on a wood rod and bake it? So cute! I make bows also and flowers for Callie's hair. I'm going to do some for Nora when I can get my supplies out again. Oh, I took Callie to the pool today and she wore her pink tutu bathing suit…I'll send a picture soon.
Hugs to Miss Nora. Quote
 

Add comment


Security code
Refresh