This is the journey through our daughter’s Congenital Heart Defect and eventual heart transplant. When you “decide” to go down the transplant route as it is called there are certain things you find out after you sign on the dotted line.
Yesterday we went to a barbeque for families from Children’s heart transplant clinic. One of the mom’s organized it and the clinic advertised it for us. We met at a local park and I think 8 families came. The kids varied in age but most (except 1) were within 3 years of transplant. It was […]
I like to think I’m on top of things. I like to think I kick ass when managing Zoe’s care. And then……I’ve needed to find a new pediatrician for a long time. Everytime something would happen at her clinic I would give them “one more chance” but after some events surrounding her bladder infection it […]
Last Wednesday’s cardiology appointment went well. Echos continue to be interesting since we have to try keeping her still for about 20 minutes. Zoe spent the time playing with the nurses and showing off her new skills while I talked with Dr. Boucek. We went back over her biopsy results; there had been some question […]
Her bladder test went well (the results were normal) but Zoe DID not appreciate the experience. The nurse kept “encouraging” me to try and distract her because she was screaming. I kept wondering if she was noticing that everything I handed to Zoe was immediately thrown! The girl is not dumb; silly toys or a […]
Zoe has been thriving the last week or so. No problems with fluid intake or eating plus she figured out how to pull herself up to standing. She’s very excited. Today she managed to stand up in front of the DVD player, turn it on and open the tray. This, of course, pushed into her […]
Zoe is one today. Hard to believe. One year ago tonight she was in the NICU with dad and I was hell bent on healing up enough to get out of the hospital. Jen Zug was with me that night and although I have few clear recollections (Morphine is a funny drug), I do […]