Steady as she goes

Big smiles from Elise these days. Thank you Grandma Mary for sending me a picture of Grandma Eleanor with Elise. She's showing you her powty lip. Bath time! Scrub those armpits! Check out that fat belly.

Well, things have been moving along pretty steady this week. We have figured out that she really likes eating in bed this week. So, she has been getting breakfast, lunch and dinner in bed. Now next week could be a whole different story, she could want to eat upside down. Who knows! Her weigh in yesterday showed minimal weight gain, so she is still right at 13 pounds, which the doctors are happy with. She is vomiting a lot less with the smaller feeds during the day and the continuous feeds at night. We have taken a step closer to going home, by having the discharge coordinator come talk to us and start getting home health and our medicines approved by insurance. But it is too soon to get excited. We all know how Elise can change her course of treatment in a heartbeat. She is officially on the lung transplant waiting list. I can't remember if I explained before how that works. For children under the age of 12 years they get lungs depending on how long they have been waiting, instead of how sick they are. So unfortunately some kids die waiting for a transplant because they haven't been "listed" long enough. The general wait for infant lungs is 3-4 months, and for toddlers and up it is 2-3 years. But Elise isn't a candidate for lung transplant just yet. We still have other avenues to try (meaning other medicines) before there are no other options. So once she gets close to the top of the list we will make her "inactive" until the time comes when she either needs lungs, or we can take her off the list completely. While she is inactive she continues to build time so that if she does need lungs down the road, she won't lose her spot and have to start back at the bottom of the list. Jason will return to Springfield Saturday to work Sat., Sun., and Monday. And I have to return Monday for orientation for my new job at Urgent care. But we will both be back on Wed. I got to take Elise out of her room again last night and walk around the unit. She talks so much now, she chatted with all the nurses that we saw. Everyone here knows her. Even those who have never been her nurse. I'll post again on Monday, I hope you all enjoy your weekend. Love, Kristin