Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Thursday, September 14, 2017

August 20th MayLee's Sleep study

MayLee has been improving a lot. In the weeks and years since her NEHI diagnosis we have learned a lot about lungs and oxygen therapy. One more piece in her diagnosis puzzle is a sleep study. She finally had it and was a champ. With her new wonder women pajamas and "pink snuggly" blanket, the was ready.

We don't have results yet. Other than, she required oxygen to keep her saturation levels acceptable. She started at 1/8 LPM and needed to be moved to 1/4 LPM. Which isn't a ton but still an oxygen requirement. I look forward to the results, hopefully it will help us determine her needs for the future. 

August 17th Clawson Family Reunion

There was soooooo much fun being had.

We ran to Walmart to grab a few items. Everyone had to try on one of these. I am pretty sure every other person at walmart had the same idea...
 The creek was a huge draw by the kids.

At night we played games

We went to the reservoir for some swimming, Kayaking and fishing.

Daddy Biked here. 116 miles.. no biggie for him.
There was also some Douglas snuggling.

August 9th Happy Birthday Jeff/daddy

I guess I didn't even get a photo of the Birthday boy in action with his awesome gifts. The only thing I did get is a picture of his cookie cake... because the baby found it before daddy did...

 It turned out tasty, Ashy would agree because he was the tester.

Girls camp

I can hardly stand that she is old enough to go. Headed off to girlies camp.