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.

Sunday, August 24, 2014

Just keep swimming swimming swimming....

Clinic day for Gator and me. Grandma and Auntie Preslee day for the girls.... 
First thing when we got up to the hospital, a blood draw. We got to see Chels, Cody, and child Life Carrie... Those are the best ones in labs. We are totally bias. And it wasn't even scary or sad because IV team comes to draw through his PICC... Then we went over to Cardiology where we said hi to Trav and Jaime at the front desk. They took us to the squishy couch room. Formally known as the bad news room, but has been better now. We did E.T. Finger and arm hugs... Then we visited with Elizabeth who we adore. She is Gators buddie who did his exercise test. Sabrina the pharmacist came in next. She said such hopeful things. That she never wanted to make us feel bad, but she knows Brotis doesn't usually do much the first round. While she is a realist and can't say it will work this time, she also said don't throw in all your chips now and give up hope. Whew!!! Jen and Dr. Molina came next. We have a silly thing with Dr. Molina... A while back we had some peachy rings from the vending machine. Dr. M mentioned how much she liked them too. Gator taught her how to make a crabby patty. She asked if he had ever had the other flavors. She brought him two whole bags of flavors that were so awesome. While we were out at the store the next week, we found gummie frogs and strawberries and so we had to take them in for Dr.M to try. Then while we were at the the health fair we found gummie ear wax. We took those to give to Dr. M.... It is our mission to find a gummie anatomical heart... Wouldn't that be so stellar??? They are happy to report that we are just cruising along right now. We popped up to visit our Teags buddy and then headed down to RTU for Gators Brotis treatment. It was a great and long day. 
Friday we all went to the Ogden temple open house. We could check another awesome thing off our bucket list. It was beautiful. 

Ry and daddy left us from there. They spent the rest of the day at Lagoon. It was really fun until they got poured on and decided they better call it. The rest of us went clothes shopping. We stopped by grandma's work to see her for a quick minute. Eden went around hugging the grandma's at Beehive and letting them try on her princess crown. Don't they look lovely?

Saturday we cleaned... I have been sort of neglecting the deep clean stuff because we have been super busy. But we cleaned the garage,toilets, and mopped floors... Aaahhh, that feels better. While I was mopping the floors I had moved all the chairs to the center of the family room. The little girls were playing on them when I overheard Eden say. "Hey May wanna play exercising?" Hahaha.. That doesn't sound like very much fun. 
Gator has another Brotis treatment today. It's daddy's turn for the fun. 
My very favorite thing that MayLee says lately....
Anytime someone leaves or after I finish speaking to someone on the phone she says "hoe dat" =who was that? 


MEL said...

I'm so glad to see your updates! We're glad you're doing well! Cute, cute pictures!!! (You look darling, by the way!)

Anonymous said...

A gummy heart -