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, December 19, 2009

Ohhh, Ho ho ho

It is almost here!!!!!

Thursday, December 17, 2009

Updates updates.....

Gator had a Cardiology appointment Monday, it was nerve racking building up to that appointment. We started telling him about the Echo and the Dr. appointment weeks before he actually had it so that he would be ready and not fight us the whole time. He did really well. The Echo was first, we had a sucker, movies, cars and daddy to distract from the "magic wand with lotion". We really love to have Belle because she knows us. Then we got to visit with Dr. Su, it is always so nice to see him and he had so many + things to say. Not improvements but no declines and that is as good as improvements to me... He went up in weight and volume of meds and is moving right along... So the big question is..... When is the Fontan? Well, I got my way and we aren't even planning it yet...Yeah!!!! We have time to just love him and get him bigger. I am hoping that with this he can get a bigger Fontan and be able to keep his original anatomy longer. I am also hoping that he will be at a more understanding age. An age when we can explain why he is having tubes and things and won't try and pull them out. When there is more to distract him like learning to read and playing video games and things like that. The down side is that he will most likely remember that he had surgery and that he was stuck in the hospital, and he will probably miss some school.... I kinda think those are minor things. So we go back in six months to another appointment, that will be in May when he is already three.

On a side note Ry and I got to go see the Nutcracker.... It was AWESOME>>>>