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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 27, 2014

Much has happened.. Well sort of...

I am constantly in a state of motion, trying desperately to do something or get something done... So I had the last post written forever ago and realized it "failed to publish"... Now it should be up. 
That caught you up to discharge day. Life has been full of mostly the same crazy.. 
The never ending oxygen battle with two kids. Both want to be free of their tethers and both need it for their health and well being. I would love to ditch it all, vacuuming would certainly be less of an Olympic event. However, I know the benefits for both these two O2 dependants, so it stays, and we battle on. I usually win these battles because I pull the "because I am the mom and I say so" card. MayLee is such a sweet little flower-finding-lip-sucker.. She sucks her lower lip instead of her thumb, finger, and never a binki. 


We have been working on reflections entries and we are hoping for something to move onto regions. Here, Ry is working on her faux stained glass 3D. Titled: Love in the World (I think) The theme for 2014 is, The world would be a better place if.... She also turned in a visual art piece and a photograph. Alex did VA, Photo, which he is working on in the picture.. Titled: More Fun, and a literature piece. His writing was about heart donation. There is a part of the entry form that asks you to write your artistic process. He didn't understand what that meant for literature until I said "what made you think about this" and he put "I am living it". Enough said! 
Cross your fingers and toes that the kids did well. 
Olaf was a huge hit at activity days Daddy daughter pumpkin carving night.. I think he looks awesome! It has been kind of warm and it's sad to say he melted/wilted... 

Eden got two incredible costumes for her birthday and has hardly been clad in anything else. This selfie proves her obsession. 
Microsoft played video games to help raise money for the Children's Miracle Foundation. They asked us to come play too. The older kids had a blast.. MayLee on the other hand was not a huge fan.. 


We will keep her any way!! 

Gator's health is good right now. We are super happy about that. He has been freed to eat his normal diet but has been restricted on his fluid intake to 1 liter a day. That isn't much and he is pretty thirsty. Dylan(home nurse) suggested some hard candies to keep his mouth occupied. On top of that we want Gatoraid for the electrolytes or milk for the good calories but limit water. Very very hard. 
He has loved having his teacher over for class and he had his first French lesson. He said he understood a lot of what she was saying but couldn't form correct responses. I love what our school is doing for us. We know how amazing we have it too. Many of our friends fight with their schools and districts. Ours has been accommodating, patient, understanding, and just plain old nice. You all want to move here just so you can have a Mr. Pullan, Miss Bobbi, Mrs. Heinecke, Mrs. Shimp, Mme. Louk, Mr. Tenney, Ms. Brown, and Mr. Baudry. Can you see the size of just our school team? Yeah, it pretty much rocks! 
There is so much good in the world. Today we were shopping for Eden's birthday party supplies. They were on the next isle over. A conversation started with Gator asking a family if they were getting things for a friend in the hospital. Sure enough they were and he said, "oh man I hope he gets better" then Eden says "gator goes there all the time, he has half a heart, but he's waiting for a new one" I am worried they are overwhelming this sweet family with the what's and how's of it all, I push my cart around to them with MayLee toddling alongside the cart because she refuses to be in it. The mom looks at me, but smiles warmly and says "that must be a long wait". I laugh embarrassed.. I wasn't even sure what I said but something to the effect of.. we are together and not in the hospital, and them doing something for someone who is there is neat... And I hope they get better soon. That was it... Until check out and the cashier pulls out a wad of bills and says that the family left it for us. 
Their thoughtfulness was beyond generous. They get double good deed points. 

2 comments:

likeschocolate said...

Love the Olaf pumpkin!

Misty said...

Amazing! You're right...there's so much goodness in the world. Can Alex have pedialyte instead, water mixed with the packets? That has the electrolytes and isn't sooooo sweet.