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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, January 26, 2017

Try everything

I love to listen to music while I am doing... well, anything.  By the title of this little post I am sure you can guess that I am listening to songs that the kids enjoy! Especially Ash! He loves this song...

Asher keeps me on my toes for sure... He knows how to use a stool... VERY WELL...
 Alex's Heartiversary was on Monday. We celebrated by taking treats into his class, going to Cafe rio for dinner and doing acts of love. All in honor of Julie, Alex's little donor. We invited all our friends and family to join in. Some of you shared with me privately all that you did. I am so impressed and felt immense love. Thank you all. One of the neat things that Alex did was so simple and yet so fun. He chose to have pink and teal colors for his braces. Pink for Julie's favorite color and teal for his.
Gator decided he was going to have a bath in the big tub. We love it, it's a three butt tub. We don't use it a ton as it uses up all the hot water and the jet lines must have a crack because they leak into the basement. We haven't had a chance to fix it. But the kids love to bath here, even if I won't let them put lots of water. ANYWAY! Alex was really enjoying playing. I know the Homies are part fish because all, and I mean all, of them love water. Asher comes running out of the bathroom once he has discovered that there was a bath going on. He kept babbling something that I had no clue to what it might mean. When he spots a stool. He isn't tall enough to get into the tub without a stool. Apparently I just wasn't understanding that he wanted to get in..... I made Gator get out so I could take photo evidence. His diaper was so huge.

 The only way to get him out of the tub is to drain it.
 He also decided to toothpaste the carpet. I got a little carpet cleaner for Christmas. I have used it so much with Asher's messes.
 Ash loves to empty the shoe drawers. He stands at the top of the stairs and throws everything down. Ironically, I was cleaning up another mess when he was making this one.

 For the STEM fair (science fair) Ryleigh wanted to do something that would really truly solve a problem. She created an oxygen fixation device. It is basically a really awesome headband that holds MayLee's oxygen on but doesn't use stickers and is better than other products that cover her entire head because she often bathes at night and others were keeping her hair too wet. Today Ry presented to the judges. Although she didn't place in one of the three overall, she did get invited to compete at the district level because she had the best engineering design as voted on by the judges. I am super proud of her. She spent many many hours working, testing and crying over this project. We both gave a huge sigh of relief when she turned it in. I am also thankful, this is one thing that is very tricky for oxygen wearing pediatric patients. Now I have this awesome device for MayLee.


 Eden's photo didn't move on from Reflections Regionals. She was extremely disappointed, but she is also excited to try again next year.
Ummm yeah...

 This happened....
 Even when his tub water was super cold  and his toes were super wrinkly.. he still wanted to play.

 Eden has had the wiggliest two front teeth. I told her we needed to come up with a plan to get those guys out. First we discussed using a Nerf bow and arrow. While this sounded really cool, she wasn't very confident she could pull back the bow. She also liked the idea of slamming the door, but felt that this method has really been over done. Finally we came up with an idea. We would tie floss to her tooth and then to one of her baby dolls. Then she would throw the baby doll over the railing on the stairs. The weight of the doll would pull out the tooth. Or we hoped it would. We got her and the baby all tied to each other, suspended the doll over the railing as we did a count down. She threw the doll down and a huge yank..... But it didn't come out. The tooth was hanging by a teeny tiny bit and she was able to pull it out. I asked her if she wanted to try the doll again. She said NO!!! So I just took some paper towel and twisted the other right out. She can officially slurp noodles through the front of her mouth. Eden has so many hilarious stories lately. I love the way Kindergarteners think. She wants to be everyones favorite.
The other night at dinner Eden is so excited to tell us some awesome news. She wants us all to guess what it is. Some of us try a few things and she shoots down each one. Daddy is being silly and says "did you start your period?" I DIE laughing... hysterics... nose snorting laughs.. Gator says "do you even know what that is?" and she says "Totally! I have already started using periods, but that is not even it!!!" Now I am on the floor with tears. Gator really has no clue either, Ashy and May are watching me like I am looney and Ry is completely grossed out. Cause she is the only one who might have an idea. She is like, "sick, Dad"! The whole reason for the guessing game. Eden earned a reward in school called a Red tail card. Way to go Eden!!!

Eden got a brand new pair of black boots with sparkles from Grandma Homer that she adores. "Probably more than Grandma wanted to spend" but somehow Eden talked her into them. She feels like a million bucks as we put them on this morning. Alex says "are they waterproof" and I say "probably not, she isn't going to stomp through the snow or jump in muddy puddles" and Eden says totally serious "yeah, these are for ROCKING THE STAGE"!!! 

  Should I let things like this slide???

 Or this??? Because it is always happening, Like always...



Two huge Lindor Truffles in his mouth at one time. This boy loves teets (treats) and nacks (snacks).
 Daddy is super smart. This is how you entertain and occupy a busy boy.


 He is just so so yummy!!!
 Last Brick!!!!!
 Jeff and I were virgin masons before we did our new bedroom wall.... Now on to mortar, then sealing it.
 The spaces left are for beams... this is going to be so rad.

At least he helps clean up... 





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