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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.

Monday, October 17, 2011

Munchies First year Movie...It's a long one!

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Munchies Birf-day party!

*Just so you know, piping cupcakes is harder than it looks on T.V.

Just waiting to get her hands on one of those cupcakes while we sing. She tried to blow out her candle. With a little help from Ry it was a success.

I think she was afraid to touch it at first.

Then she really got into the action.

YUMMY!

That was tasty!

She covered herself enough that she needed a quick.....

Bath in the sink.

Then it was present time....

We all got into the unwrapping....

Daddy got her a Wii. It is just what she wanted...Everyone has been loving it.


Her very most favorite part was the boxes and paper! We can't believe she has been with us an entire year..... We love you Munchie!
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Sunday, October 9, 2011

Munchie On her day





Crazy little goof, is 1! We love you sooooo much!
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The start of Gator's costume!

Here is the start to Gator's 'Monster Truck Driber' costume... I made the truck out of cardboard, then covered it with paper mache'.

Getting ready to paint. It is going to be green!!! of course!

My helper man is ready with his paint brush!

My mom supplied some cool fabric so I can start sewing his jumpsuit. It is going to be awesome!
Munchie has the bottom portion of her cuppy cake costume. The liner.
Ry finally decided on Queen Frostine from the original Candy Land! I even found a blue handled broom at the dollar store for the scepter! I still need to find her fabric and sew her a big blue dress! I checked online but I am having a hard time finding a cheap long blue wig. I thought a saw a blonde one I can spray at Walmart, or we can always spray her hair blue.
I love costumes so much. I am a tiny bit sad that I didn't get to theme the children this year. I knew it was coming, I just thought I might squeak by one more year, but no such luck!
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Ry and Gator says

Friday night we had a date night. Daddy and I love to include the kids because we don't spend a bunch of together time during the week. Friday nights are fun for this reason and I look forward to them. I know that my little family does too! One thing that we like to do, is find a fun spot to eat out. We have tried many little "Hole in the wall" joints and that is what makes it memorable. This Friday we finally decided on a tiny Japanese restaurant. Ry ry was not thrilled. She wanted something completely different and was set on it. Now this little girl doesn't throw to many tantrums but I can tell when one is coming on. We were sitting in the booth waiting for daddy and Gator to get back from washing hands when I looked over to see her; head down, pout face, laying on the table. I told her...

"Ry if you are going to continue to put your head down and pout, you can head right out to the car and wait for us to finish eating".......

She quickly changed her mood, sat up, and said "Mom, I am totally fine... The reason I had my head down is because... IT'S BEEN UP ALL DAY!"
(No arguing with that one!)

Then in Church today, I let Gator use the restroom during sacrament meeting. One of my biggest pet peeves is my kids running in and out. I try to have them go potty, get a drink and chat with a few friends before it all starts, so that they are ready and have all those things out of the way. The problem with today was: as we were leaving Munchie needed her stinky diaper changed, the garage door would not close and so I had to get out and hold the button, and I was offering the opening prayer. Sometimes getting everyone there all by myself and on time is a big job. I told him that he could go if he was very reverent. He folded his arms and left. Coming back a few minutes later I considered it all to be a success. Gator came over and asked for something and while I was helping him tuck his shirt back in I noticed the end of his tie was wet...

"Gator boy, why is your tie all wet?"
"Well mom, I am sorry, but.... I just peeped on it a little bit" (also showing the amount by squishing his eyes closed and pinching his fingers together)

Dang that tie!




Wednesday, October 5, 2011

Post with out photos

Do you hate it when I post without offering a photo?
I do too!
 I promise to get something done about that.
Until then!

Monday was Gator's follow up with the Dr. Su..... We rode Trax to our appointment. Not sure if I will do that again. It did save time and head ache a little but it was extremely awkward to carry Gator's oxygen tank, the diaper bag, my purse, and the baby. I looked like a regular pack mule. It was fun for Gator, not so fun for Munchie, and so I think we will pass next time. Gator had to have an Xray, EKG, be measured and weighed, his saturation's monitored, blood pressure, and of course heart listened to. It was a pretty fast visit. Everything was awesome!!!! His x-ray looked great. He is weighing in at 34 lbs and is taller maybe? 3 feet 3 inches! He was looking so great that we decided he could stop wearing his oxygen during the day! He is so excited that he doesn't have a leash anymore. I am so excited I don't have to worry about the half-child (it seriously seems like I carry another child around with me when we have that tank. Plus there is worry involved, like if you have enough air in the tank) Things from a heart perspective look really good. Yesterday he wanted to run by the grocery cart instead of be transported around in it. It would be nice to report that his appetite is improving but it isn't yet. I would also like to think that he is somehow, magically, going to be able to do things that were hard before....

Take for instance his seat belt.

I have had it with his seat belt. He is big enough to manage his belt on his own. He gets into the car and plays around until we are out on the road and then tells me he needs assistance. GRRRRRRR! Why not sit in the car, work on the seat belt while I am strapping in the baby and then if he needs me, have me help, before I get seated and belt myself.... He waits... I was finally fed up yesterday. I had gone through all the counting, ignoring, and patients I could muster. I was trying I tell ya! finally we are about ten blocks from home and he is carrying on. I told him that instead of sitting there messinga round he should have gotten it on. If he didn't get it on then he would be put to the side of the road to walk the rest of the way home.
I got to three.
I pulled over and got out, making sure we were safe I walked him to the side walk and he was bawling. I knew he was scared.... I wanted him to know that seat belts are not games, and they are very important. I went and got back in the car and pulled out and told him to start walking. I had to flip on my hazards and drive in the turning lane but I started to follow him. He stopped crying and actually started to giggle... AAAAHHHH this was fun for him. This was not the message I was hoping to drive.... no.... walk home!(hehe) I said out the window. "Would you like to get in the car and try that seat belt again?" He looked at me and smiled "ummmm nope" My blood started to boil. This was not even going to work. I thought I had it nailed down. DANG GIT! I asked him again after a few more minutes... His answer was the same. Okay, time for a change. I stopped, held his hand back to the car, opened the door helped him in, and jumped in. I informed him that he would be going to bed when we got home. There was the punishment I was looking for. He was mad he would miss out on the evening and possibly dinner. I can't get him to eat why would I make him miss a meal. Making him eat it all was a bigger deal, he went to bed after. Only he played in his room until ten and I told him to knock it off and go to sleep. He is a turkey! He better be vigilant about that seat belt from now on, otherwise it is to bed with him.
Ry was freaking out about having him walk until he started to smile... This would have put her over the edge. I am totally going to have to parent each child differently. I can't wait to see how Munchie-munch is!

Speaking of that little Girlie! 
Today is her BIRTHDAY!

I can't believe she is one!