SUNDAY, AUGUST 10, 2008 07:52 AM, EDT

Being home is awesome!

Ally is walking everywhere. At the hospital she really couldn't walk around, so after 29 days of not really walking it is great to see her choose walking over crawling!

She is also eating like a champ! Ounces and ounces of yogurt and cream yesterday. This morning she is enjoying a muffin. At night she is on IV fluids. It is just saline, because although she is a good eater, she is not a good drinker and her kidneys are very fragile right now. The fluids go for 10 hours and she gets 500 mls (16 ounces).

Now, if only she will sleep in her own crib! The first night home was rough (as it always is in a "new" place). Last night was better, but baby feet in the face and a baby hand in your mouth is not a great way for mommy and daddy to sleep!


MONDAY, AUGUST 11, 2008 02:03 PM, EDT

Tonight we are headed down to the Ronald McDonald house. Tomorrow morning we have an appointment at the Jimmy Fund Clinic. We think they are just going to take her vitals, draw some blood and possibly give her platelets or red blood cells IF she needs them. We understand they want to see her, and make sure things are going well, but we really don't want to make a lot of trips to Boston just for a blood draw! Hopefully we can convince them the visiting nurse can do all of this, and IF she needs blood, THEN we would come down. The day away also messes up Ally's schedule and we just don't want to have to go....but now I am just complaining...when I should be thanking them for taking such good care of our baby!

I'll be sure to let you know how the day goes.


TUESDAY, AUGUST 12, 2008 12:59 PM, EDT

We are back from Boston. It was a pretty good trip. We were only at the Jimmy Fund Clinic for 2 hours. They said she looks great, she didn't need blood and we don't have to go back to Boston until August 25th! They are going to let us go to the nearer hospital for transfusions (if she needs them) and for her new medicine that requires her to be hooked up to her tubies for an hour every 2 weeks. We couldn't have asked for a better day (other than not having to go in the first place!)