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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.

Thursday, May 31, 2012

Gator Grad

Gator graduated from Preschool. He learned a lot in preschool. I think he is ready for kindergarten...  
He performed all the songs, including the freeze dance!!! He is one of three boys in his class...  
Munchie is a joy and at the age when holding still is super hard.... 
 
When talking about what he planned on doing this summer he said, "have my mom take me to the beach" Yeah, we will have to make do with what we have....He also said he wants to drive monster trucks when he gets big...                                                  
Miss Joey is amazing!! Good job Gator man! 
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Ry's Choir concert

Miss Ry did a fantastic job with choir. She stuck out the practices (harder for mom). The theme for their performance was an American tribute. The kids did a great job. Ry's favorite songs to sing were Fifty Nifty States, and Send it on down the Line.....  
We had her giggling when we called it Fifty Thrifty and we all had that song stuck in our heads for days after... 
 
In this song she was a waitress, which almost every other girl decided they wanted to be... But, she was the cutest little waitress ever! 
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Time to get our play on!

 
With the school year winding down things have been happening every day and I haven't had a minute to catch up... The kids are excited to get their summer clothes out and for lazy days and days full of fun to begin... I love summer! Munchie will keep us all in line too. She is a bossy little person... Everyone thinks she is cute so they don't get to bothered when she tries to boss them around. 
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Friday, May 18, 2012

Why yes it is!

Yes, this is exactly what it looks like! I had a shower this morning. Munchie is a regular shower moocher and I let her come in. After our shower I got her all snugly in her hooded towel and was getting dressed. A few minutes later I noticed the signs of Munchie wanting to use the potty! So I helped her on! She quickly signed "all done". That's when I noticed the ick already on her legs, she wasn't dressed so I just put her back into the shower to rinse off. Then I was on the hunt.... Eeeeewwww! I don't think I have ever been more grateful for wipe-able leather!!!

Thursday, May 17, 2012

Garden Delight and other delish things.

Today was a pretty typical day around the household! There are just a few things that cracked me up that I want to remember... For instance... My veggie garden consists of three tomato plants, a row of peas, a row of beans, a row of raspberries and the most gihungus rhubarb plant! I really like rhubarb... When I was little, we visited grandma and grandpas' house... They had tons of yummy treats growing right outside... I picked raspberries, ate corn on the cob, green apples and cherries (till I had the runs) and they had rhubarb. I like it with salt! Yummy.... My folks grew it too.... so it is a family tradition and I am sure my kids will want to as well. I had a huge piece today and Munchie and Gator were in heaven. It was awesome... The neighbor boy who thought it was celery even loved it. For a later snack we had graham crackers dipped in milk... I think this is an all time "think of my mom" comfort snack! This is a typical dessert for my mom! Munchie dipped and dipped, till the cracker was so soggy it kind of melted on the table. So she would just bend over the mess and hoover it! I think my Munchie shares my adventure for food. Not so much Gator with his oral aversions and obvious dislike for anything green or good for you; and Ry who is going through the weirdest picky eater stage... Munchie is my kinda girl... She will try anything... even wall materials . All this talk about yummy food makes me kinda hungry for some good stuff.... Sliced tomatoes, cucumbers in vinegar, green beans straight off the vines, mush(cream of wheat) with squishy lumps, toast with sugar on it, Green apple Punch Bags from the Ideal Dairy(Richfield shout out!), slushies with home made soft serve, cheese curds, and raisin filled cookies... I need to go visit my grandparents!!!!! Also, I need to finish planting my garden and hope it grows really fast so I can have some of these things on a regular basis.

Tuesday, May 15, 2012

Heart Update and Jump and Bounce

Gator had a cardiology appointment last Monday. I love going to clinic at the Riverton location. It is so much closer to home. The first thing we did when we got there is had pictures (x-rays). Gator is so good for the girls, they always make comments about how easy he is and quick to do what they ask. Then Gator played video games while we waited to be called. It wasn't a very long wait and he was disappointed that he had to quit playing. Then we got a surprise!!!! Dr. Su wanted an echo. It had been a long time since he had had one. Gator was a little mad because the stickers that they put the leads on, are his most HATED thing about visits and he always wants to go home and take a bath to get them off. We had a great tech and she did a fantastic job talking him into putting them on and promising he could pick from the prize basket if he was good. He wasn't as good as x-rays but he did well for being surprised by the echo. I really try and tell him everything he will be expecting even if it hurts. He has his own way of dealing with it when he knows about the procedures. He was thrilled when he got to take off the stickers and they didn't even hurt. Then we talked with Dr. Su..... It seems like everything is doing really well. His Sats are not super high, that is a result of the fenestration. His tricuspid leakage has improved, a huge happy deal. I love to hear that things are improving. He hasn't had a serious illness since his endocarditis... Such a relief that he has stayed so healthy this winter. The only thing that isn't an improvement is the function or squeeze of his heart. In fact it may have gotten a little worse. That has been Gator though. He was on a medicine called Digoxin that was supposed to improve that some. I asked our doc if he thought the decrease in function had to do with stopping that med after the Fontan. There hasn't been any major proven facts that it helped in the first place. So we are not thinking that is it. We just watch and wait. With all this great news we don't have to go back for a YEAR! That seems so crazy. Our doc is always there if we need him but, we don't have to make an official appointment for a year.... WHOOO HOOOO!

So in the mean time...
We are gonna play hard!
For Gator's Pre-school, they go to Jump and Bounce for an end of year party. He kept asking how many hours until we were going. This kid needs to learn time, I tell ya!
So here we have Munchie trying out the slide...  
And Gator with blue lips from playing so hard.... I checked his Sats at the end.... 82.... This kid just wouldn't stop.
 
Here is wonderful Miss Joey, Issac and Gator all at the top of the big slide. Miss Joey promised Gator she would do the slide with him and she did not disappoint! 
Muchie loved it too... I thought she would want to just run around, she wanted to climb up the big stuff like all the other kids... 
Open shut them, open shut them, give a little clap clap clap, Open shut them, Open shut them, put them in your lap.... All the kids getting ready for snack! 
Checking out the fruit snacks.... but remember...."You get what you get and you don't throw a fit" 
Then we needed to come home and cool off... drinks from the sprinkler 
That is kinda tricky without getting soaked. 
It was fun trying anyway 
He also wanted to get a quick ride in... 
 
Munchie just wanted the water.... 
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Fifteen Minutes

This little boy said to his dad..."Daddy, I think I want you to take the training wheels off my little bike so I can learn to ride it tippy" So they found some time on a Saturday afternoon about three weeks ago and it went something like this.
Okay buddy, you can do this... I am going to hold on to you, when I think you are good, I'll let go...
Don't let go Daddy.......
If I don't let go then you won't learn how to ride it.... 
I got ya!!!! 
You are doing so great.....
Gator says "I am awesome at this!!!!"
 
K- I am letting go...  
And he took off and had it all figured out in about fifteen minutes... If you kind of scoot on it to work up speed then you can start easier.
He is a pro now.
He wants to go out everyday and ride in the front yard. I am so proud of him. We had to talk him off an emotional cliff once or twice when he wasn't perfect at it the first time he tried... Those little feelings of frustration are not new, but learning to keep on trying is hard. Both Daddy and I kept saying how we thought it would require so much more. He just got it  I am hoping reading and other tricky things come this easy to him. Ry is really quick at picking things up... Gator, is quick too... just delayed because he usually has a road block he has to hurdle first (like a broken heart). So once the I'm ready and mature enough to do this happens then he just does it! Munchie seems to be the same... She is talking so much and signing a ton. It sure does make it easier on this momma!
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Learning about himself

While driving in the car daddy and Gator have this sobering conversation.
G- Daddy, I think I want to have surgery again.
D- you don't want to?
G- I do!
D- why would you want that?
G- cause then I could have a whole heart!
D- oh buddy
G- yeah cause everybody else has a whole heart and I don't.

He is aware that he is different, not completely bothered by it, but wants to fit in. It is time to reenforce how individuality is a gift and a blessing! We embrace everyone and their differences!

Sunday, May 6, 2012

The ramp

Daddy fixed up a broken ramp that he "acquired"!!! Gator loves stuff like this! He practiced going off of it with a lot of help from me! He would speed along until he came right on the ramp, then I would grab him under his arms and help him fly off. He would make comments like "i am awesome at this" "check me out"! We had fun, I was super tired! Munchie just likes to hang with us!!! She rides around on her big wheel by scooting her feet, she hasn't mastered the pedals yet!