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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, August 29, 2014

It... Well.. This...

Yesterday at clinic we were going about our regularly schedule activities, blood draw, weight, height, check up... We hooked up with a new friend Teagan #2.
And also saw Miss Elizabeth..

Alex has been feeling kind of slow lately. When we visited with our team explaining his extra sweating, his poor appetite, his growing fatigue... Coupled with some of his blood work there was a big concern that Alex was failing and needed a little more tweaking then they felt comfortable doing in office and at home. 

So.... We were set up with a room in the ICU. Alex was doing good morally until he realized were we where and got frustrated by the circumstance. I explained that he needed to change his Milrinone from .5 to .75 and the likely hood of staying in the ICU was small.. 24 hours... We also added Spectra or Septra (I haven't actually seen this drug yet so I don't know what it's called) but we know it helps him not get infections. We have hit his immune system and need to be pro active in keeping him healthy. Flu season is creeping up on us, our whole family/extended family have pledged to help him stay healthy by getting flu shots. We can't get the mist because it stays "on you" for 14 days.. So he could potentially pick up something in those 14 days. Boo! 
Once settled in we saw Miss Jen who helped make things way more comfortable. This was an out of control time. No bags packed, no green snugly blanket, no toothbrush. So having Miss Jen here made everything better for Alex. I made it home last night to my mom and sister Pres.. They are awesome and have taken care of the little people. Jeff came up to be with his boy. Then home to sleep. While Gator is in ICU he has a nurse with him all the time so he stayed here without being scared. He had a great night and morning. He has ordered everything from room service.. 
He is gaming with Estiban from the playroom! He is tolerating all the changes.. We are doing well. 


Thursday, August 28, 2014

Wednesday, August 27, 2014

Mommy and the littles

Awesome selfies

May sucks her lower lip like this all the time... 

Monday, August 25, 2014

A Wednesday day in the life of Gator.. Picture addition


I have begun this post three times... Now technology, please work. 

7:30-sneak into mom's bed
8:30-get up and play a bit while mom is putting meds together
8:32- morning meds
8:36-pick a sight and clean it
8:37-Lovenox
9:13-Eat breakfast 
9:20 still eating breakfast, oooopsie forgot this med
9:28-still working on breakfast.. A tiny bowl of applesauce and some milk..
9:48-finishing in a hurry.. Dylan just got here.
9:50-dressing change
10:36-supplies delivery
11:01-bath

11:17-dressed
11:21-make bed
11:30-helping mom with girls
12:36-favorite lunch/food of all time

12:45-afternoon meds
12:56-sugar chaser
1:00- rest time
2-ish-a super rainy day. It rained so much we haven't been able to put the tent away. We even got hail. The funny thing about that is Gator was fascinated by it. He loves pebble ice a ton. He crunches crushed ice all day at home. When this magical ice feel from the sky he wanted to eat it. I told him go for it... He put a bunch in his face and said through crunches "man that is good hell".... I did not correct him. 





3-5ish turn off the TV and play, read and build
6:10- dinner
8:33-evening meds

8:40-waiting for family prayer... Then off to bed
-this was my first 'day in the life, photo addition' I plan on doing it a little different next time. The things you learn. 









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?