My son will be turning 4 this January and that in and of itself is great news. Nothing is scarier than having just given birth and not knowing what the future of your precious new child will hold, like simply living.
my son was born with PUV and severe reflux bilaterally. Of course there was renal damage and at birth the nephrologist basically said he could need dialysis and a transplant within a month or a few years, time will tell.
we just returned from our fourth visit to Cincinnatti children’s hospital, which has a dedicated PUV clinic and specialty care. After three years of daily intermittent catheters, every 3 hours, every day- there is no more reflux and his ureters have returned to an (almost) typical diameter and shape! They used to look like the worst varicose veins on imaging. His kidneys are stable and the prognosis is a possible transplant around age 7 or 8. Now he only uses nighttime catheterization. What a miracle!!!
Further, his surgeon said he looked great and he is correct. Although my son is a little smaller in stature and proportions he caught up quite well. (At 10 months he was just under 5% for height and weight. Under Cincinnatti direction was started him in NG tube).
He is bright active very engaged in life and a typical young person. Furthermore, he is sensitive observant generous and kind. He has had speech therapy weekly for about a year and his sounds are now on par with his peer group.
I thank God every day for the little miracles. I used to pray every day for a big miracle- you know the one where the blood work comes back normal or the ultrasound looks normal. Or they just wake up with functional kidneys one day ( I can’t be the only one).
now I am so grateful for all the little things and little improvements- no infections in over a year, healthy eating, happy smiling affect, language development, and so many other little miracles. The little miracles help me feel like a normal mom now. It took awhile!
I stopped wishing for things to be different and simply accepted everything as it was- all of it. I embraced love and gratitude for my little person above everything else. I embraced the little miracles.
New to the group!
15 and Stage 4 CKD
