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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.

Wednesday, November 23, 2011

A star is born

We have been featured in a few things lately and I wanted to show you a few of the fun clips!
 

 

 
All of these clips are from the COOL SCHOOL!!! with Big Budah.
It was a lot harder than I thought. Budah is amazing at coming up with things on the fly that make things flow. He was also really cool with the kids! He would let them get a photo with him when he was in between clips which I thought was super nice.... It was an early morning starting at 5:30 A.M. The we were at the school at 6.... Ry did great except she was a little tired by the time school started. Good thing it is early out day!



This is a public service announcement that we also participated in....Our heart friend's mom is doing a film course. For her last assingment she wanted to do her PSA for Make-A-Wish. I am the female voice over and Gator and Ry are the last two voices. It was fun neat to be asked to help out!

ENJOY!

Sunday, November 20, 2011

Project Family Room Remodel

The first thing to be done is to take down the old tile and replace it with the new tile. We have since painted walls and we are getting new carpet in just that room tomorrow! I can hardly wait.

In Munchies attempt to help daddy she sat right under where he was working. She wanted to try everything out too so she also tasted the dry wall crumbles.
Before
After
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Sink Baths

As with all my babies, Munchie loves water. She loves to splash and shower, tub and swim....

She loves sips of cool water

She crys when we have to get out and dry off.


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Paint A Wish

We have had so much fun with our Paint A Wish art teachers. Our November Crafts were so fun.

Even though Gator's attention span for projects were he sits and follows instructions is short he manages to get his glitter on. My mom and dad are so awesome for letting us use glitter in their house.



Ry's finished turkey turned out so cute! She is really a great artist.



Munchie even got in on the art action with a little chalk art. She just wanted to be like the big kids.
Thanks gals for the fun and for teaching us about different mediums of art.
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Sunday, November 13, 2011

That's German

This morning, Gator has been watching himself sing various primary tunes in the full-length mirror in my room. It is funny to hear him sing the same lines over and over. The best part is that he thinks the little boy in the mirror is his identical buddy. He also has conversations with his buddy. My favorite one went like this.... "pop corn popp'in on the apricot tray!!!! Tray? That his not how you say it, YES!!!! That is German for tree, see you say it like this Traaaaaaaayyyyh! What? No that is not right, I am gonna ask Pappa when we see him... Good!" then he makes a face at himself and runs off!

Monday, November 7, 2011

FAIL! and more

I was driving my baby sister home after she helped us all weekend. Gator was playing games on my phone in the back seat when it rang. I had him hand it to me. I heard the last of the message which told me that my card was locked. I started to panic thinking Gator had done something to make my card freeze.... I followed the instructions and then hung up. I kept feeling weird about the call, so I called the hubs to see if he had had a similar phone call. As soon as he started asking questions about it I knew I had done something terrible. I had been scammed... Why did I give out that information, you ask? If I had realized what was happening I would not have done it. DUMB ME! I had to call and immediately have my card blocked and all transactions ended. It had only been a few minutes so the scammers would have only had about 15 minutes to use my information. I had to file with the police and today had to go to the bank and report everything in person and shred my old things. What a mess. If you get a call don't do what I did.... Don't give out any information. The bank will have all the information they need besides a few things to verify you are who you are!
AAAAHHHHHH!

Today Gator went to Cardiology. He weighed in at 33 pounds go buddy go! That is the 15 percentile! and he is 95.5 centimeters tall.... I can't think of inches right now, but it is the 5th percentile and on the charts! On the charts is better than not!
Dr Su said Gator is looking so great, he is glad that we are finished with all of the staph business and we can move forward to the healing portion of post-op. He allowed Gator to discontinue his oxygen at night and we get to drop his Aldactone... We are down to 4 meds a day! That is good news for this momma with the brain fog. We don't see Doc Su for six months! Gator does have to go to Immunology because of his globulin counts being kinda wacky and having received platelets they want to be sure that his body can handle his immunizations. Especially his MMR. So we will visit them in clinic in two weeks.

Ry continues to be a busy gal. She is in choir and loves it! The best part of that is that she loves to sing because it is a team effort not just her as the solo gal. She also signed up for JR. Jazz basket ball. Daddy said he would work with her. We gotta utilize her height. He also took her running the other day. They went 2 miles. Ry felt great after but there where a few parts that daddy had to hold her hand to keep her moving. Not because she couldn't do it but because it is harder than it looks to run that long the first time out.

Munchie munch is into everything. She is way messed up by the time change. She can't seem to figure out why her schedule just changed so much. She still gets up at her normal time, why can't the clock work the way she does? On Sunday she came to sharing time with me and she has a new favorite song. "Do as I am Doing" I have to get it on video it is great!

Life is busy and full! We love it!

Wednesday, November 2, 2011

Cuppy Cake

You're my Honey bun, Sugar Plum, Pumpy-umpy umpkin
You're my sweetie pie
You're my Cuppy-cake, gumdrop
shnookems bookems
you're the apple of my eye
and I love you so
and I want you to know
I'll always be right here
and I love to sing pretty songs to you
because you are so dear!


With sprinkles and a cherry on top!

Double fist'in suckers

Our creepy pumpkins... They were kinda fun to do this year. Papa C got us a kit that made it really easy. Ry even did the kitty all by herself!
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Monster Truck Driber

Outside of preschool! On his second day of preschool.

Check out these Moobs (moves) mom!

What can I smash?

We went to The Wishing Place to the Halloween party and when we walked in Gator saw Batman. He said to me! "Mom, I didn't know they have characters here! We need to do that first cause there might be a big line and everyone is a wish kid so we can't go to the front of the line."

Gator ended up ditching his truck for most everything. It was pretty bulky and because it had real lights it was kinda heavy. So it was mostly for show and he just Trick-or-treated in his jumpsuit. He was still not very fun to trick-or-treat with. His legs are short and he got tired fast.
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Queen Frostine

From the Original Candy Land


Grandma found the blue wig.





Her class


School costume parade
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Youth conference

We helped with Youth conference, The Amazing Race! I didn't score any pictures, just these two of munchie in the swing at the park. Dang-it. Daddy was on a team and raced all over with the kids. We helped with lunch. I love being involved with the youth, because of our callings we get to be involved with almost every organization in our ward.

Crooked little smile
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Recognizing Ry

Ry Ry has always been compassionate and sweet. She is very social and loves to make friends. When she was in nursery she would find toys for the kids that were crying. We said she was on the compassionate service committee. She has become even more aware of others and trys to be friends with everyone especially those that need a hug or a little extra love. Well, her teacher thought she deserved to be recognized in front of the whole school. We couldn't have been prouder of her.

Way to go Sweetie! We are so thankful that you are ours!
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First Day of Preschool

While others started months ago! Gator had to wait until he was well and done with treatment. So He finally started and was so happy he couldn't wait to be with his friends. He really doesn't like the "school" part but he LOVES the friends.

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Treatment over! LAGOON!!!

Gator finished up treatment about two weeks ago. Our HH nurse came over and pulled the PICC line. We saved the PICC because we thought it would be cool to show off later. I thought I should flush out the blood that stayed in the line and when I did I completely sprayed blood all over my face and white sweater. OOOOPSIE! To celebrate finishing treatment we went to Lagoon's Frightmares. We had so much fun. Part of our Amazing Make-A-Wish is getting a passport to the participating attractions. Amazing Lagoon is on that list! One of two in Utah! We Love love LOVE Lagoon. I was so excited to be able to go to celebrate with Gator and see his joy. Munchie stayed at Grandpa's cause she needed naps and we felt bad keeping her in a stroller all day. We really wanted to be able to have some fun with the two older kids. Ry is finally tall enough to ride all the rides so this was a very special trip for her too! She was stoked to able to ride even the scary coasters!!!

He is so happy to be free from lines and down time for meds.... He wanted to ride the Merry go round over and over!

Gotta love the chicken! He also sat on the giraffe and the tiger.

While Ry and daddy did the big coasters Gator and I did some of the things that were more suitable for his heart!

Ry would humor him and ride a few of the little kid rides. He wanted to be in complete control....

Some of the guys were kinda freaky! That is true concern on Gator's face, not just posed for the picture! But, the actor was really cool with him and would not totally freak him out to the point he cried. Notice Ry is not pictured she would not get within twenty feet of this guy.... His eyes did her in.


We can't help but be a little crazy... The sign says "Just Hanging around at Lagoon" Hahaha!
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