Walkers for Jocelyn-Kidney Walk

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Walkers for Jocelyn-Kidney Walk

Walkers for Jocelyn is a team that was formed to walk in the Kidney Walk in Wilmington DE. She has had numerous procedures, tests and surgeries.

Jocelyn is our 13 year old daughter who has suffered from Kidney Reflux and Non Neurogenic Bladder since she was born. We have met SO many in the "Kidney Community" that have touched our hearts and have become Jocelyn's Kidney Friends. We have been spending a lot of time researching these and other conditions, many, including what Jocelyn suffers from, can cause severe kidney damage and even kidney failure. We are always looking for ways to raise awareness!

04/26/2023

Jocelyn had her post-surgical appointment today to check her bladder function and to ensure that the surgery worked.

I am happy to say...it worked!!! She never has to do that test again unless something outside of normal happens to require it. From here on out, blood work and ultrasounds should be it for her check ups.

She is at a MUCH higher capacity, her bladder pressures never went up even when they filled her all the way up, and her bladder is no longer shaped like a Christmas tree, and just everything looked fantastic!

The dr came in with fist bumps and smiles and praising Jocelyn knowing that the work is being done. The nurses were all thrilled for her.

This has been an almost 15 year journey...almost 15 years we have been working toward this day and here we are. She is proud and happy for everything she has gone through...and said today she would do it again to get the news she got today. We needed this win...SHE needed this win.

Now and next? This is, of course, not the last day she will have bladder/kidney disease. We still have our daily medical routine to follow, meds to take, semi-regular ultrasounds and bloodwork, but the harder stuff seems to be behind us for the foreseeable future barring any issues that may arise...but they won't, right?

Our village has always been amazing! From the doctors, nurses, support staff at Nemours Alfred I. duPont Hospital for Children to friends, family, and the National Kidney Foundation- Maryland and Delaware so thank you to everyone for everything thus far!

03/09/2023

Thanks to everyone who shared their pictures with us! If you wore for share it with us!
🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡

03/04/2023

This Thursday, March 9th!

Go with us!!

Wear your Orange, tag us and use hashtag

03/01/2023

March 1st..the first day of National Kidney Month. I thought I would share the beginning of our Kidney journey.

Jocelyn was about 8 weeks old and had been fussy most if those 8 weeks. Mom was starting to think it was Colic. On September 3rd she started acting lethargic and had a low grade fever. She was napping a lot that day. I called the doctors office and they said she didnt have a "fever" and suggested Tylenol and Motrin. After one of her naps her fever had gotten up to 101°. I called the doctor again and I could tell they were treating me as a paranoid new mom and I KNEW something was wrong with my baby. I told them I could show up or they could make me an appointment. When we got in her fever was at 104...and we were sent directly to DuPont Childrens Hospital. Her fever had shot up to 105.6 by the time we got there. I'm almost certain, as were the nurses, that she wasnt dozing in and out but actually maybe losing consciousness at that point.

Many tests were issued (horrible tests including a spinal tap) as they searched for a reason for her quick decline. Within hours we learned she had a UTI/Kidney Infection and had become septic, instantly admitted. She was in bad shape...real bad shape. We were all terrified. She was only 2 months old, how could she be so sick? Further testing showed she had renal reflux...her urine was backing up into her kidneys...and so starts her journey.

We are 14+ years in and have learned and grown so much. She is the strongest kid I know.

12/23/2022

We have reached 500 followers! Thank you for your continued support. We could not have done it without each of you. 🤗🎉

10/17/2022

This weekend was perfect weather for the Delaware Kidney Walk.

08/31/2022

This girl had a fantastic post op visit today! The incision is healing beautifully and they were finally able to take the last drainage tube out!

She is having some pretty significant discomfort, bordering on pain, where the hole in her belly is after the tube came out...I am sure that is to be expected after it being stitched in there for 5 weeks!

Dr Figueroa and Nurse Alice were impressed at how well she is doing and we don't have to go back for another 5 weeks when she gets an ultrasound to check her bladder out.

She is a rockstar. We are all proud of her and, more importantly, she is proud of herself. ❤️

08/02/2022

Freeeeedommm!
*snip snip*

We are finally home! Time to settle in!
Visits should be good for this weekend!

08/01/2022

We are going home tomorrow! I need to learn how to flush some tubes and we need to remove a tube and that should be it.

She is doing so well. Pain level is nonexistent. I am amazed. I wholeheartedly believed she would be in agony and we really only had one rough day.

Today we walked the unit a couple of times, went through the unit and the the whole 2nd floor and outdoor Healing Garden. Now it's a Criminal Minds bingefest.

Address

Harmony Street New Castle
Newark, DE
19720

Telephone

+13024657461

Website

http://donate.kidney.org/site/TR/Walk/NKFServingtheDelawareValley?team_id=207966&pg=team&fr_id=8876

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