Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Saturday, February 26, 2011

The past couple of days....

The past couple of days haven't been that bad on oxygen as we have been learning how to manage it again. We have made it out of the house some too, which had it's learning curves but we are finding our groove again. Gator has gotten stuck many times and yells out " I AM STUUUUUUCK!" His face contorts because of the tender grips (little stickers) and his snotty nose is turning into crusty lip boogs. EEEWWW! We had a chat with his wonderful preschool teacher and she wants to keep him in school... Hurray! (I know I mentioned this a thousand times but Miss Joey is Awesome!!!) We talked about where and how to do his tank and to call if he is having an issue. Monday we are doing show and tell at preschool about his tubies so that those little curious kids know what is going on. I also chatted with his car pool and everyone is on board. Tomorrow we tackle church and the tank... I am just a little bit nervous of how we are going to get there without help, since Daddy goes for bishopric meetings in the morning. So I am on my own to get us all there dressed, on time and prepared because both of my littles have talks in primary tomorrow. It will be Gators first talk.. Dat ma. (stole that from you Cheltz, cause I love it and I love ya) They are speaking on being kind. I thought about writing individual talks for both kids, but then Gator is in Junior primary and Ry is in Senior. The other kids won't even know..Right? Next week they are going to bring us some of those baby tanks, B tanks, I believe. They are about the size of a hair spray can. My amazing momma and Gators Grandma made him a special back pack for this little tank. We think it will give him freedom to move around like a normal kiddo. It was specially designed to fit Gator so that when he goes places he can still be himself. We thought we would paint something cool on it like an Alligator. Gator is still thinking what he would like. I can't wait for the tanks to get here so we can see how it all works...

In other News-

Ry goes back on track on Monday. She can hardly wait. It is the pits to be off track during the winter months. You have to stay inside because of yucky weather. I can't wait for next year when we go traditional. That way her big breaks will be during warm months when she bored I can say. Go outside and get some fresh air.

1 comment:

Andrea, the little collector said...

My goodness! What adventures you are having... Hope the talks went smashingly well! Sounds like Gator is being a trooper and that you have good helpers. Sending a hug to your whole cute family!