Pages

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.

Tuesday, April 26, 2011

And what of the News?

I have chatted with Gator's Cardiologist, and the news is good. He said that Gator's heart is looking pretty good. The area we were concerned about has been a concern from the beginning. It is something that the surgeons might address in the future. Dr.Su believes that he is a candidate for the Fontan. Yiiiiippppeeeeee. (Not that I am happy about sending my son off into another surgery, I just want to see him well) So our plan is this. Dr Su would like our family to enjoy his wish, so when we know the dates for his wish we will start planning his surgery date. We can't plan Wish dates until we have passports. We won't have passports turned in until Thursday.  Everything in time I suppose.

Hurray for a cruise... I gotta loose those pesky baby pounds, who am I kidding, loose the cookie, cake and candy pounds...

Play'in at the Park

 She almost didn't hold still long enough to get proof she was with us.
 He wanted to play with rocks.
 I made him take it off the play ground site



 She enjoyed the sunshine, wind and cool air for about ten minutes until she was done.


Up where the air is clear!







Munchie is my little buddy. She is most content in my arms. I love that she also loves her daddy, and he her!
Posted by Picasa

Happy Easter

Sure enough the bunny visited our house... Then we learned about the true meaning of Easter. The resurrection of our Savior. We celebrate the life, the new and everlasting life. How wonderful during this time of year!



Posted by Picasa

If you wash it, it will rain!

We love to do stuff as a family. Thanks to the kids and daddy my car was sparkly clean for about three hours before it got rained on. I love spring!





Posted by Picasa

Happy #4 Gator Boy!

Gator and Uncle Chais opening presents.


We celebrated at Classic Skating. Gator's party was in the F/X Room where everything lit up with a black light. I was so busy having fun I only snagged these two shots. It was a very fun party!

We are so happy to have had another year with our sweet little boy! He is such a joy!
Posted by Picasa

Soccer Star

She has mad directing skills, can kick the ball in the right direction most of the time, and is stunning in bright Tiger's orange and black!

Ry Ry is good at everything she tries. With a little more practice she will be really good at this too! This is her first year of soccer and I think she is loving it. GOOOOOOO Tigers!
Posted by Picasa

Wish Granted

After thinking over it long and hard, Gator wished for a truck, trailer and boat. That simply was asking too much. So then he asked for a ride on a cruise boat. He still got his "boat" and his wish was GRANTED!

Mickey wrote Gator a letter telling him that he was so excited to have him come on his boat. He also got to have this neat letter from Make-A-Wish that said his wish was being granted and he ate at his very favorite "out" place. Chick-a-lay!


We topped the night off with ice cream and some wonderful gifts of a Cars themed beach towel and some water toys.


This is genuine joy here people. (OK, so maybe not for the camera happy mommy)
Posted by Picasa

Friday, April 15, 2011

The results



Gator did so great. We chatted with dr. Day after his cath. The first thing we discussed was the pressures they like to see this number below 15, Gators pressure was 12. They also like to see his other number the pressure in his heart to be below 7 his was 9. So that number wasn't that great but we think it is because of leaking in the tricuspid. They had to insert the cath in his groin and also in his neck because he is post Glenn. The Glenn surgery makes it so they can't thread the cath into his lungs through the groin so that is why we had to go in the neck. I had to go pump so daddy went in to meet him in recovery. He was so not happy! He is old enough to tell me he was bugged. We couldn't let him move much and he needed to go potty. We kept telling him to just go, he was bound and determined to hold it till he could use the toilet. He was in so much pain from holding it. Finally our nurse let us carry him to the potty and he did a 180 degree change after that he was even pleasant to be with telling the nurse "Fanks dear" for getting him a tissue. He ate a whole bunch of Mac n cheese out of a Emesis basin.yuuuuummmmmyyyy! He really wants to go to the play room but just isn't supposed to move. We think we get to go home at 9:30/10:00. He asked "what if I had another leg?" so we think he is still a little loopy. We are doing great. Check in tomorrow for more news.

Cardiac Cath

Just wanted to give the update of what has been going on around here. We got the call yesterday that Gator wouldn't need to be up to the hospital until 12:00. He did really great this morning fasting. He did ask a couple of times why he couldn't have cocoa marshmallow maties for bressfess. He was frustrated that he could only have sprite to drink. He told me Sprite stunk for bressfess. Papa came to watch the girlies until Grandma Clawson could relieve him. We packed up Bensie, his snugly blankie, his distraction things that Englands and Miss Joey brought, (especially the Nintendo DS his buddy B-man borrowed him) and headed up. He played so well with the toys while we checked in and stood on the scale for weight. He complied to have his blood pressure and pulse ox. He really didn't want to wear the hospital Jammies but he finally did end up wearing them. I had to turn his underpants around because they were on bass-akwards. We then had a long wait because the cath lab was behind. Which we understand, we just don't talk about food and we play and try and stay happy. They finally brought the Versed to make him loopy and happy. It really didn't make him happy, just loopy and tired. He would pick up his arm and roll his head and he said. "Do I get to keep these jammies, I am wearing?" We finally handed him off to the team with a bunch of freekle (freckle) kisses and him giggling. The procedure should last about four hours. So we are going to hang out. Home life is good. The baby is sleeping hours and hours for my mom and so it has been Grom and Ry hanging out. I started to feel panicky a little while ago, thinking it was taking a really long time. Then I looked up at the clock and it had only been around and hour and a half. Not time to stress yet. Thanks for the loves and thoughts.

Thursday, April 7, 2011

Some things he says...

I love it when Gator says these things......

I just can't BREEB (breath)

Is today famlee homo-me-bing?(family home evening)

Can I have ramma-noodle or a Breeddoe? (Ramen noodle or a burrito)

I really love this bressfess! (Breakfast)


His latest story goes something like this.

After falling down a friend asked if he got a boo boo.... He was baffled and later said.


G-" We can't say boo boo's because that is a bad word, right mom?"


M-"I didn't think that was a bad word, we can say it."


G-"No, it isn't nice to say."


M-"How come you think boo boo is not nice to say?"


G-"Because it has nipples!"


M-"You mean boobs?"


G-"oh yeah!"


M-"yeah we probably shouldn't say that, you can say chest, or for guys pecs. Boo boo is okay to say for an ouchie though."

Munchies Current Statistics



Munchie lives up to her name again. After visiting the Doc yesterday for her routine well baby and getting three pokes we learned that Miss Munch weighs in at 18.3 lbs she is in the 90% she is also a whopping 27 inches long also in the 90%. We are so glad she is healthy and chubbers. She is an absolute joy. Those teeth are still trying to get through on top (hence the runny nose). Her hair is coming in nicely too... Just like big sissy's when she was this age.

Making His Wish

At Make A Wish Place, Talking with the fabulous Annie. She describes the wish tokens. Everyone can make a wish with the Wish Tokens. Gator and Miss Ry at the pond ready to throw in their tokens.

Listening to the instructions about how to do everything. We had pizza and enjoyed the night together.
In this room Miss Natasha and Mr. Dwain put together a fun package for Gator and Ry. Ry got a Barbie especially dressed in Make-A-Wish clothes and a Easter bunny... Gator got a pin, hat, shirt, teddy bear, make a wish car, Frisbee, ball, gel stickers, and a Cars tent.

Then Gator got to put his wish in this magic cylinder that would be sent to the wish granting wizard.
This is the amazing wish granters, Mr. Dwain and Miss Natasha.


Now we are getting closer.... on the other side of that door..... The one that needs to be opened with the key that he has around his neck........ is the wishing room.
Gator was a little nervous of this room. It was very magical and he thought he better have daddy hold him a minute to protect him if he didn't like the wizard.
Each person wrote a special wish for Gator. This was an emotional part for me. Most were wishing he would be healthy and happy.


Then they placed his wish inside the cylinder in the wizards magic hat. (still nervous of the creepy wizard)
The music plays and the lights twinkle and change. The wish is sent off....


We will see if the wizard got Gator's wish and we will learn if it can be done.

The whole event is catered to the family. They even have a special welcome sign.
Here is the key to the wishing room and the token from the pond.


He was so excited about his tent that he wanted to sleep in it the first night.
He also couldn't wait to put the gel stickers up.


Each step into the wish process is terrific. This is an amazing experience for our little family.