Burrito boy and a move!

Today Alex had a lot of fun playing with Tamra and Tess in the morning. He is very much looking forward to having some of his classes start again. He's also looking forward to seeing his friends and of course more mama and dada. It's been tough for him, but he's doing well. When Rory comes home he'll be excited to spend more time with the whole family. In the afternoon he enjoyed spending time with Nana, mama and dada- here he is wrapped up like a burrito.

Rory has moved!
She's still in the NICU, but in the "green zone" which is the step down unit for the "stable intensive care unit babies" (the NICU can handle nearly 50 babies!). The green zone area is not very big so we don't get to sit in the super big comfy chairs- but we're happy that she is doing so well- we'd be happy to sit on cement blocks! We congratulated her on graduating today. She is much more alert and aware and looks much better. Sanda came by the hospital and visited with her- we all enjoyed the visit.

Rory is doing very very well, they took off her nasal cannula (humidified oxyggen/air) and she is breathing air. She continues to have a sump draining her from above, her washes from below are going well and she continues on antibiotics. They will continue to watch her to make sure she continues to respond to treatment. There is discussion about when to start feeding her again (right now she is getting her nutrition through her veins) which may be soon. We are pleased that she has fewer and fewer tubes each day!

Regarding surgery- as long as she continues to do well, she will go home and continue her home care in preparation for surgery (pull through procedure). There is a possibility they will not be able to the single stage surgery and she would need to have a colostomy with later revision. If she gets sick then she will require surgery before leaving- this would be a colostomy with later revision. She is being followed by the pediatric surgeons, we really like the team that is taking care of her, the pediatric surgeon (Dr Powell) really makes sure that we are aware of what is going on. Linda Haga the nurse who works with the pediatric surgeons who specializes in Hirschsprung's is fantastic. We feel great about the care the we are getting at Children's National.

Sleeping comfortably on dada

She doesn't like her sump- she tries to tongue it out, or she'll suck on it to move it. As we said before, spunky kid!