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.
What a busy week! I’m just now getting a chance to update people.
Monday: Zoe went to her physical therapy appointment; she is now considered average for a 7 month old (she is now 9 months) so she is still making improvements. What we discovered is her right arm and the left side of her torso […]
I have learned another valuable lesson when dealing with insurance companies; it is not considered rude to tell them off, it is the only communication to which they respond.
Case in point: I called to get Zoe’s synergist shot refill (RSV prevention) shipped and was informed she had already received five shots this […]
Her labs came back on Wednesday and they looked great…probably the best they’ve ever been. Her CMV score was a mere 190 and there was no indication of inflammation in her body. The coordinator called to give me the results but was supposed to call me again after talking with the cardiologists to […]
I was on the line with the transplant coordinator when she got paged-she told me there’s a transplant today. Please pray today….one family is saying a final good-bye to their child and another family is scared they may have to but also excited about the possibilities ahead.
Zoe saw the pediatric dentist yesterday morning…..early morning. Dr. McDonald was kind enough to open his office at 7:30 for her so she wouldn’t be exposed to other kids. He wasn’t able to tell us if her tooth was all the way through but he didn’t think the gums looked like there was much excess […]
I feel Zoe has finally entered the realm of being where she is a walking (okay scooting) paradox. She’s beautiful. Not just baby cute but beautiful, and hearty with baby fat rolls and long elegant fingers. When she leans over to pick up a toy and accomplishes small tasks for her physical […]
I was in the kitchen this morning when I heard Zoe wildly giggling (doesn’t happen that often) so I ran into the living room and told Noah, “do it again; whatever made Zoe laugh, do it again”. First I should explain we have this very large foam wedge from when Zoe was an […]
Her labs came back and her cyclosporine level is 171 (target is 175-225) but they are going to keep her dosage the same.
The physical therapist wanted me to start checking Zoe’s name recognition skills. For instance, when I think she’s hungry and I say, “do you want food?” she erupts into grunts of eagerness. That’s one but at eight months of age a baby should be recognizing three to four words. I tried asking […]
I need to hire a personal assistant for Zoe. It’s been almost three weeks since Zoe’s tooth popped through the gumline. I don’t mean a tiny little point of the tooth…one minute there was nothing there and the next the entire top of the tooth was through a couple millimeters (forgive me for being a […]