Annie's Home!!!

After 40 days in the hospital, Annie finally came home yesterday!  This battle started the first week of August, nearly 4 months ago, and we are so thankful she is now doing well enough to come home!  We still have lots of unanswered questions about her care and the timeline for further testing to determine if there's a chronic underlying issue, but the doctor who needs to consult with us about all of that won't be available until Monday.  So they told us we might as well wait around this weekend at home instead of waiting in the hospital.

Annie is still on several medications in addition to her usual ones, and is still on a specialized formula.  We knew neocate was really expensive, but not until they handed us the receipt from our order to take home did we realize really how expensive!  About a month's supply of neocate is over $1200--about 4 times the cost of her normal formula! She's tolerating the neocate very well at her regular rate, but we have no idea how long Annie will need to stay on it--it might be a permanent change depending on what they find during her colonoscopy within the next month.  We feel like we have a newborn again since this new formula comes in cans of powder that we mix up in bottles, rather than the ready-made cans we're used to opening and pouring straight into her feeding bag.  We also have a new medication schedule taped to Annie's bathroom mirror again because it's going to take some time to re-memorize the doses and frequencies of the 7 drugs she's taking regularly throughout the day now.  But on Monday we should be able to talk to the GI to find out how long she needs to be on all these new drugs and the neocate, and find out what the plan is for further testing to possibly make a new diagnosis.

No more hospital gowns!  Got her own pj's on and ready to go home!

Packing up the room--we collected quite a bit after living in the hospital for 6 weeks!

All at home together again!

Annie LOVED getting out of the hospital!  During the whole ride home she kept her head turned looking out the window smiling!  This morning we gave Annie a "spa day" where we gave her her first real shower (with conditioner) in 6 weeks.  We changed out her g-button so she has a nice fresh one and replaced her tubing too.  She got her nails trimmed and I cut 2-3 inches off her hair!  (Pictures will be coming soon--they're on my other camera.)  Tonight we even had a little dance party to celebrate Annie's homecoming!  We danced to fun music by Mike Tompkins--our new favorite--and everyone had a great time!  We're so grateful to have Annie home with us!