I haven’t posted in so long, and that means things are quiet. Life has settled into its new normal – healthier, stronger, with close surveillance and some moments of fear and anxiety, of course, but in general a lot more ordinary.
I can hardly believe that the surgery was six months ago. We approached it with heaps of hope and caution. If the immediate aftermath of the surgery was a lot harder than we expected, we are nothing but grateful for the subsequent months. Everyone knows that transplants are life saving, and we were fortunate to have the surgery long before Daphne’s condition was critical. She was approaching End Stage Renal Disease, which would have meant dialysis. Nobody wanted to reach that point, but we were close. She lived with advanced renal disease for a long time, and now, with the surgery recovery behind us and months of normal kidney function, we can fully appreciate how horrible life was back then. She was weak, ate poorly, looked sick, had very little muscle strength, and we lived around her dietary restrictions, hydration needs, and the constant fear of her condition deteriorating quickly.
Don’t get me wrong, her life is still fairly different from that of the average child. She takes daily medications that she will need for the rest of her life. She needs frequent labs to monitor her kidney function, medication levels and any viral activity. When she gets sick, especially with a fever, the transplant team turns into a SWAT team. As a consequence, we are still pretty careful about exposure. But things have been – knock on wood – stable. She likes her Daddy’s kidney. It is making her grow like a little weed – an average of one inch per month. She is also climbing the weight charts. Before the surgery, her weight hovered around 25lbs. Her stats, as of yesterday, were 39″ tall and 32lbs. Still tiny, but well within the range for her age.
She is gaining so much muscle mass that her body is having a hard time keeping up with it. When we had the annual IEP meeting in June, the district requested another physiatry evaluation to check if she needed orthotics or inserts, and as she gleefully says it, “the running doctor suggested Ballet.” Next week she begins Pre-K and could not be more excited about it. For the first time, we are letting her stay in school 3 full days, eating with the Lunch Bunch. I think she may be ready.