Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Monday, April 14, 2014

Getting teeth

Teething is rough on little people. There was much snuggling required today. 

Photo op

Just a couple of my little girls. 













Sunday, April 13, 2014

Kitty cat nap

What I wouldn't give for someone to ask me to go take a nap. She fights me on it. Then she falls asleep holding her icecream cone..
I tried to wake her but she told me she wanted to just close her eyes for a little minute till we got home. 

Mays Pulmo appointment

May had a pulmonary appointment on Thursday. Ideally we would ditch the oxygen. That was a pipe dream. There were lots of great things like; we don't have to do her breathing treatments everyday anymore. We can be amazed by her progress. She is on track or advanced for her age. She speaks about as much as an 18 months old. She can say 15 to 20 words including: 
Get down
Doggie
Thank you
Please
Ry
Mommy
Daddy
Gator
Dee dee (Edee) 
Grandma
Papa
Drink
Baba
Candy (also does the sign)
Eeeeew
Yucky
Sicko
Duck
Boogie
No
Mmmmm nummy 
Treat
Birdie
Go (she actually sings this with Elsa/Frozen)

Now to work on the signs and words for book, outside, play and nap. If she can tell me these words, she will be one happy kid. 
Also, we are ecstatic that she is a great eater. Often times NEHI kids work so hard to breathe that eating is secondary. This usually means a feeding tube to help get the nutrients they need. Especially since babies need fat for good brain development. I am so glad that she has done well in this area. 
She is walking around like a crazy lady despite her tether. She gets tipsy when she is off her O's a while, we can't figure out if it's lack of oxygen or if she is so used to having tension from her hose that freedom makes her more unstable. She wasn't a huge fan of the nurse or attending because she is worried about those guys. They usually mean Synigis shots of which she is not a fan. She was friends with doc Uchida until he tried to listen to her. She sounds about the same.. Crackle crackle... 
All in all a great visit. 







Make A Wish Easter egg hunt

We had a fantastic day Saturday at the MAW Easter egg hunt at the Zoo. An Eagle Scout team stuffed 3,000 plastic eggs. Gator wanted to talk to them, he asked them is they stayed up all night to fill them. He asked if they slept the whole day so they could fill them? Then he busted knuckles with them all and told them thank you! I love that he is getting better at being gracious. It is especially cool to see those who have helped to be so happy about him being grateful. I think he recognizes that now. 


After hunting for eggs we went to the zoo! We saw the elephant baby and the brown bears. Those were my favorite parts. 

We had lunch at Costa Vida, then Jeff rode his bike home... It was a fun but tough ride because of a gnarly crosswind. 













Conference

We had an incredible conference weekend. I feel renewed and so excited to have many of my questions answered. It fills up my spiritual bucket to have all the great new things to ponder. 
Each cup has a word and a candy. Gator listened and probably got the most candy. He also practiced reading because each sign had to be read correctly in order to take a treat. We had our friends the Bensons over for 'Pancakes and Prophets' an idea we stole from Jeff's brother.., what a fun idea. The pancakes were so yummy! 

Ry must have found my phone for this awesome selfie! 

We went down town to window shop while papa and daddy went to the priesthood session.




Wax museum

Ry had an assignment at school to write a biography. The end of the project was to turn yourself into the person and sit in a wax museum as people passed by to see you. 
Ry chose Twiggy. 
This was a perfect pick for Ry. While many students chose athletes and persons of historical significance Ry chose a person who had significance to her. A fashionista. A person who came from a rather ordinary back ground to become a person in her industry who helped create and push the bounderies. 

She had to have two poses which she changed every five minutes. Also a short descriptive sentence. When her button was pushed she would say.. "My name is Twiggy Lawson, most people know me for my fashion but mostly my makeup"

It was all seriousness at the museum. 


Here are a couple of her darling friends..
Martin Luther King Jr.

Johnny Appleseed 

Pocahontas 

Sacajawea 

Jane

Shirley Temple

(This is Whitney, I can't remember who she did her biography about) 

Shawn Johnson 
I was so impressed I waited till five minutes was up so I could see Ellie's next pose.
This girl did not disappoint!!!