Thank you for such uplifting news. There are now such medical miracles that were never even dreamed of when I was a boy. So wonderful to see that smile. My prayers are with you and your family!I want to share with you the latest news regarding our granddaughter Maia. Today she turned one, a milestone we celebrated in grand style yesterday.
As I wrote earlier the prayers and well wishes have been answered, she is doing well, even far above the best expectations. She responds very well to the medication, ranking in the top 5.
In the last months the hemodialysis has been reduced to once per week, once per two weeks and as the regular blood analysis (once per 1,5 week in combi with flushing/renewing the dialysis tube) stays at this level, the periods between hemodialysis is adjusted. At this moment she is in her 5th week without dialysis.
This also means her kidneys are functioning on an acceptable level, about 60% where they were functioning on the age of 3 months only for about 8%. We do need to take into account that this high percentage is achieved partly because she receives about 1.5 liters of fluid daily via tube feeding—which, as I understand it, is roughly double what a peer of hers requires. So she will need tube feeding for several more years. Due to scar tissue, earlier damage, her kidneys will likely not grow, there might be some progression as the build up of calcium in the kidneys might be broken down over the years. So she will likely outgrow her kidneys and will need a kidney transplantation in the future, but not, as earlier planned, when she is about 10-12 kilos.
So we already call her the miracle child. Once again, thank you all for your involvement.
View attachment 632705
Rob



You are truly a precious angel.