some great news….: My son will be... - Parents of Childr...

Parents of Children with Kidney Disease

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some great news….

MotherofBarbearians profile image

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.

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MotherofBarbearians profile image
MotherofBarbearians
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10 Replies
Knitting20projects profile image
Knitting20projects

What wonderful news!!!!!! I’m cheering for you and your sweet son 💕💕💕💕

Carbonomega profile image
Carbonomega

great news! I’m going through something similar with my 3 going on 4 year old…. Just curious as to what made the catheterization process manageable for you son???

MotherofBarbearians profile image
MotherofBarbearians in reply toCarbonomega

I think starting him off at 10 months made it easier for him. Calm consistency is important at this age. When he was around 2 we went through a bit of a rough patch with his body independence phase that made it tough for a few months. But we moved through that. It’s ok to come back to it. I also did my best to not limit our activities and learned to cath on the go. The hardest part was finding g a bag to place the catheters in without bending them

Carbonomega profile image
Carbonomega in reply toMotherofBarbearians

We also use this company that supplies the catheter and bag together and already lubbed.

Carbonomega profile image
Carbonomega

thank you so much for your support, you made me feel so much more comfortable doing that for my son. I successfully completed it (with support from my husband too) and I feel soooo confident!!! My son understands now and it’s such a smooth process!!!! :)

MotherofBarbearians profile image
MotherofBarbearians in reply toCarbonomega

That’s wonderful to hear! I was also thinking that you can experiment with cath-ing in different positions. During the day we did a lot of standing catheters - getting good at just doing it in the park or just on the go.

There were also times that we did it laying down ( with a firm support under him) and it eased up the process when I couldn’t get in.

either way, glad to hear you are having success!

BearMama0321 profile image
BearMama0321

I am SO THRILLED for you both - your son for this fantastic prognosis/news and you for the total shift in mindset. ❤️❤️❤️❤️

Carbonomega profile image
Carbonomega in reply toBearMama0321

Thank you!

Quamel_Mom profile image
Quamel_Mom

Hi there! That is some wonderful news to hear how amazing your son is doing!. It is very hard when your child comes into life fighting. Continue to accept victories and milestones no matter how small or large they are.

Carbonomega profile image
Carbonomega

I am happy to hear you can see the bright side in all of this. You are such an inspiration!

A strong mother like you is such a blessing for the little guy. Continue to pray for your little, as I will be as well🙃

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