Maybe heading to Boston

Today was a great day. Jax is still not sleeping well so I'm still exhausted, but ya keep on going anyway, right? I left Jax with daddy today and went on Mondo's (Raymond) field trip. We just walked over to the high school so they could run a mile and do some games. I needed to go with him because he is my one that gets neglected the most. And I haven't done much with their school this year. But man I tell you I got my excercise for the week, geez.

And some more mommy bragging, Carter and the D backs had a great game tonight. Carter got a double, a single and a walk, and they won, they are getting better and better every day. I keep forgeting my camera, tommorrow I won't forget to take some pics.

Julie took a blankie up to a little girl here that just had a kidney transplant, she's doing great, already out of ICU and on the floor.

I talked for a while with Jaxsons hemo doc. He is still waiting to here back from Denver, their being a little slow. Boston was very enthusiastic, and we can do a consultation without having to travel there. I had to take some pics of Jax to email them, one of his face, a naked front and naked back, so they can see the puffiness in his face and neck. His hemo doc will send all of his paperwork there and they will let us know. So to get this fixed we are for sure going to have to go out of state, either Denver or Boston, probably Boston just because they are quicker to get back to us and this needs to be taken care of. My ped is considering getting another CT of his head to check the pressure because of his super crankiness. We also think the increase in seizures may be related. Any time you screw up the body they have more seizures. So we will wait to do anything drastic about the seizures until after the SVC is fixed. The tonsils and adnoids are on the back burner indefinitly. Luckily its not needed too bad, if we turn up his O's at night he's good. His hemo said he doesn't know if he'll ever be able to be off the bloodthinners for two weeks, not with this clotting disorder. A clot is much to risky to chance.

I'm a little worried about going to Boston not only because it will be super expensive to travel all that way, but if he has open heart there than he may be there for a while. He is not easy to extubate, and it will be at least a couple of weeks hospital stay. Plus we just got Ray signed up for summer classes, and I don't want him to miss school, he needs to get it done. Jax has been interferring with school for him since the day he was born.

Here some of the sexy pics we took for Boston. I don't think you can see how puffy he really is in them though. In person its a lot worse.