Whirlwind

Wow what a week. Gib is still in Maine recovering and Ellie and I are here trying to figure out what she should be eatting.

Gib is feeling much better but is still weak. He is good in the morning but as the afternoon comes to an end he is beat. It has been about a week and half since Gib last saw Ellie and he is starting to miss his girl. So tomorrow he is coming for a visit and then going back to Maine to continue getting better. The last thing we want is for him to come back too soon and have a relaps

We are targeting Monday for Gib to be back and to start learning how to do everything that Ellie needs at home. I have changed her central line dressing twice now and after every time I feel like the nurses should undo what I did because what they do has got to be some how magicaly better than mine.

Ellie is only eatting about 6 mls of milk and hour right now because that is how much she can handle. Last week when she hit her limit her intestines kinda shut down for a day or so. Then it took about two days for her to recover, so we had about 4 days of really bad gas and lots of vomiting. I let Ellie set her own limit on food on Sunday and all the sudden I had a smiling happy baby again. So 6mls it is for a while.

I have gotten her doctors to agree to a very slow progresion in the way of amounts with a goal of eventually reaching her limit again, but hoping that it will he higher this time. This will continue when we go home.

I am still having a hard time with that idea, HOME. I have been going thru a whirlwind of meetings and lessons for preperations to go home. But what everyone has to keep in mind is that August 1st is just a tentative date. We could go home on the 2nd, 5th or even the 30th depending on whether Ellie and Gib are ready. (The doctors have been tracking Gib's progress up in Maine and are very aware of the fact that we can't go home without Gib at 100%.) And we could go home on the 1st and be back here on the 4th.

All in all Ellie is happy, Gib is better and with help from our families I'm doing well too. So in the Ellie marathon we have just finished the first 5 miles with many more to go. But hopefully the rest of the race will involve a house, a garden, walks around the neighborhood, and a trip to the beach.