Where We Are

Hello Readers!!

It has been a while since we have blogged here at Walkers for Jocelyn but we have some ideas to help spread awareness and really get out into the kidney community.

First, lets's cover all of Jocelyn's bases.

We are two Botox injections in and we are seeing improvements.

What is Botox?, you ask. This excerpt was taken from University of Utah's website:

       "Botox needs to be injected into the muscle of the bladder. This is done in the clinic or operating room. First the bladder is flushed with a local anesthesia, via a catheter, which is allowed to thoroughly numb the bladder. Then a scope is passed up the urethra (urine channel) into the bladder. A small needle is placed through the scope and several injections are made into the bladder designed to spread Botox throughout the muscle of the bladder. Most patients tolerate this procedure well."

We have actually seen commercials for Botox for Overactive Bladder. Jocelyn thinks it's really cool to see what she has on television commercials. 

Jocelyn has been improving and most of the time she can stay dry. This makes her very proud. She is able to wear underwear and has even fallen asleep in underwear and woken up dry. Jocelyn has stated that she likes wearing undies more than Goodnights. This makes us all very happy as we never thought she would make the mental transition. 

Next steps...while on the outside things have improved greatly, inside things look the same. Stable is normally a good situation, in Jocelyn's case, that's not good enough. Her bladder still contracts too often and doesn't empty. Her right kidney is still very swollen. She isn't in a good enough place, medically, to remain stable. Jocelyn has her next appointment in August to repeat some tests to see if the second round of Botox gave her urinary tract a chance to heal. If not, we are afraid that surgery will be back on the table. The surgery of all surgeries. We have been fighting against this surgery for 2 years and don't plan on stopping in August.

Mitrofanoff...where they take her appendix out to use as a canal from her bladder to her belly button for us to catheterize through. Taking ALL pressure off her bladder and kidneys. The reason we are so against it? It's irreversible...meaning, if she gets better, oh well, permanent hole in her belly. We are hoping to get Jocelyn up to, or through, puberty before we make a decision this big for her. I would love to have her input on the decision. The other reason we are against it is, her personality. She is a fantastic kid...we don't want to change her personality so much that we don't recognize her. She is so self conscience as it is...a hole in her belly that may leak urine from time to time, may ruin her. There is so much to consider. 

Anyway, that's where we stand medically. It is a lot of information. Please message us if you have any questions! We are pretty transparent and willing to answer almost anything. If we don't know the answer, we can certainly try to find the answer for you.

Thanks for reading! 
Note::: Kupcakes for Kidneys going on in Newark, DE next month!

Here is Jocelyn at Turkey Point, North East, MD. She is growing up on us!

Our Evening In Philly

Our friends at our local NKF office invited us to an event in Philadelphia, near the airport. What we were told, is that we would share our story to a group of about 50 people. I thought it would people who are involved with our area walks, it was not. It was a training event for all National Kidney Foundation offices.

Once we arrived, we were led to the front table of the room. The room, with about 8 large round tables, was small and encouraged mingling and small talk. Everyone looked at us as if we might have been in the wrong room, not rudely, but we did seem out of place with a 5 year old and a teen.

We were told that we were seated with the CEO of the National Kidney Foundation and we were a little star-struck. We were also sitting with our Philly NKF ladies, so we didn't feel completely out of place. There were two people from the San Francisco office and they must be good because they loaded up on awards for their fantastic kidney walk!

The night got started and they went over some key points for making kidney walks a success. They seemed to move along quickly as we knew it would soon be our turn to speak in front of all of these big wigs! Ahhhh! Talk about tummy doing somersaults! Once we got up there, I think we did fine.

We told our story and our "why" for joining the kidney walk. When Jocelyn was diagnosed, we were sort of in a "big medical words" fog. We had to do something...we went online looking for anything and the first thing that caught our eye is the NKF. They had A WALK...IN OUR AREA! What started out as an outlet to do something for Jocelyn, became a mission for our family! We wanted to help, we wanted to share Jocelyn's story, and we wanted to put Pediatric Kidney Disease on the map.

Since joining the NKF and the walks, we have been given wonderful opportunities to spread the word! From a printed article in our newspaper to a local radio show to a tv talk show! We are grateful for the support and compassion that has been given to us from all the Philly NKF Staff!!

Attached is the picture of us with the Philadelphia NKF ladies and the CEO of the NKF.

We Are Blogging!

So here we are, blogging for a cause!

Some January information and upcoming events!


Walkers for Jocelyn is officially registered for the 2014 Wilmington Kidney Walk!
Join us or donate by clicking the link!


Jocelyn is currently in the baby step process of getting back to cathing. We are desperately trying to avoid the mitrofanoff surgery. She is doing well right now and is considered to be stable. This is a very good time for us to assess her future and the medical path that we want to take.


This year our focus will be on working with the National Kidney Foundation (NKF) to spread awareness of Jocelyn's struggle and conditions. Not much is known about what she goes through and the NKF is being so supportive as we work together to achieve both of our goals.


Some fundraising events that are already planned are
Wed. March 12th--Friendly's Fundraiser in Newark, Delaware
Sat. March 29th--My Thirty One Fundraiser (closing April 2nd)
Sat. May 17th--5th Annual Kupcakes for Kidneys Bake Sale in Newark, Delaware (hoping to acquire other locations soon!)

Thank you for reading and stay tuned for more blog entries!