Our first PKD Foundation Walk

Today we participated in our first PKD Foundation walk. Going into this event, I was really excited. Although it was over 2 hours away, we still had plenty of family and friends who planned to join us. We stayed nearby in a hotel room for convenience and around 10:30 a.m. people started arriving to meet us. This is where the story goes downhill. As people arrived at Fountainbleau State Park, they noticed a sign that read "Park Closed". A little confused, friends started to venture out, wondering if they were in the wrong location. They weren't. One member of our team found a park ranger, who told us that the walk was cancelled and someone should have been at the gate to inform us. When Jason and I got to the park, we were greeted by three frazzled volunteers. They were not aware of the situation either. Apparently, it was someone higher up in the foundation's responsibility to communicate with the park. This person, however, conveniently forgot to communicate to the participants that the event would not take place. The volunteers were in a frenzy trying to figure out the best way to handle the situation. Angry and embarrassed would be an understatement to how they felt. You could definitely tell. Vehicles were steadily rolling into the drive way and they had no answers. The volunteers came through the best that they could given the circumstances. They did registration off of the tailgate of a truck and found a bike trail for us to walk on. The bike trail was definitely lacking. It smelled like a dump and was extremely narrow- especially when bikers were coming through- but we all came together and walked for a cause, and that's what really mattered.

Yesterday, I was fuming about this situation. I believe that the PKD Foundation's actions were extremely unprofessional. Those who are higher up in the organization didn't even have the gall to show up and handle the situation themselves. The poor volunteers, who were just as unaware as us, were thrown to the dogs. We had over 30 family and friends drive 2 hours to walk down a stinky bike trail. For that, I am truly sorry. I have intentions of contacting the foundation and becoming more involved. My hope is that next year there will be a family friendly event with entertainment for both adults and kids, food, and activities. This walk could have been so much more, but instead it was disappointing.
 
To the volunteers, thank you for your efforts. You made the best of the situation that you could. To our family and friends, we are extremely sorry that it was such a let down. We are so thankful that you all support us, though. Y'all are AMAZING! Oh and thanks for the pictures Kandace! Lol
Oh, and to Team Alexander the Great.. You guys rock! It was great to see so much support for your family. Hopefully next year will be better! It was so nice meeting you all and look forward to keeping in touch!





































































- Posted using BlogPress from my iPhone

Nasty, rotten kidneys

Yesterday was officially one year since Parker had his nasty, rotten kidneys taken out. That day was one of the scariest days of the whole process. During birth, I was unusually calm. I don't know how to describe it, other than I knew he would be okay. But, surgery was out of my hands. He was in the hands of a complete stranger that I had only met for 10 minutes. I believe those 5 hours were the longest of my life. If I spoke 2 sentences in that time, that's a lot. I do believe, however, that the surgery saved his life. I believe that surgery is the reason he is doing so well now. So, thank you to Dr. Roth for saving my baby.
Just to give you an idea of exactly how nasty and rotten his kidneys were, here's a picture of them after surgery.




- Posted using BlogPress from my iPhone

Good days..

One of the last blogs that I wrote mentioned that Parker was getting an NG feeding tube. He did. It was a long, thin tube going through his nose and into his stomach. He ate by mouth during the day and was connected to a machine, that gave him continuous feeds, at night. This didn't last long. As always, Parker had another plan. He pulled it out twice in the middle of the night. The continuous feeds were too much for him to handle.


Right after he pulled it out the last time, Hurricane Isaac hit. There was so much going on that the tube was the least of my worries. We never put it back in and he is eating just fine.


We went to clinic on September 11th and his team was ecstatic with his growth. He's pretty much back on the chart for length (68cm) and weight (8.07 kg which is roughly 18 lbs) we are going to start growth hormone shots to give him that extra boost, but they are no longer pushing a feeding tube. They have seen that he can eat on his own.


The best part of all is that they said we can start talking to the transplant team! They didn't give us any precise details of when or who, but we are hoping that we will get more info at our next clinic, which is in October.


- Posted using BlogPress from my iPhone

My baby is ONE!

Well, technically I am two hours post birthday, but it's been a hectic day. I cannot even begin to believe that an entire year has passed by already. It is crazy to see how his physical features have changed and adapted so that he is the perfect mixture of Jason and I. He looks completely different now, compared to then. His personality is so energetic and happy already, and they say that his energy level will be through the roof after transplant, so say a prayer for us. I still remember that night like it just happened. I can tell you each and every detail like it was yesterday. Okay, so I can tell you most of them. Don't forget that I was drugged at one point. I remember beginning to panic, because I never heard him cry. My panic was a tad delayed, but at this point I was so out of it I could barely lift my head. My poor husband struggled to keep it together, but he did. He was so strong and supportive. He just looked at me and said "He will." Seconds later, Dr. Robichaux was screaming, "Did you hear that? It's him! He's breathing on his own!" Although I could barely hear Parker, those words were the next best thing. Jason went to see him and when he came back he was pale and withdrawn. All of the color was washed from his face and I didn't even worry. I thought that it was because they brought him on the "other side" of the curtain. He has been known to pass out at the thought of medical procedures, so I figured seeing it was too much for him. Little did I know, it was because Parker's chest was caving in with every breath. Jason didn't share this with me until later. He let me go to sleep believing that everything was going to be okay. I was mad about this at first, but I thank him for it now. I just hate that he had to worry alone.

Forty days later, we brought home our miracle. He has come leaps and bounds since that day. He is the best thing that has ever happened to us. I wouldn't change one decision we have made. I am so lucky to have found the resources and doctors that saved him on that day. And people say social media is useless! It helped to save my son! Thank you to Lindsey for your blog! Thank you to my fellow kidney momma's for pointing me in the right direction! Thank you to EVERYONE for the prayers! We are eternally grateful!

Feeding tube Part 2

Yesterday we were admitted for Parker to get an NG tube. It's a feeding tube that hangs from his nose. He had one in the NICU so you may remember the pictures. He eats well on his own normally, but sometimes his dialysis wears him out and we have trouble getting all of his calories in. We are so close to transplant that hopefully this will be the boost we need to get there by the end of the year.

This stay,by far, was the most miserable. My child is the happiest baby I know most days. Well, not any more. He is cranky and irritable non-stop. He spent 5 hours yesterday screaming bloody murder. It was-well, still is-rough on all of us.

Last picture tube free
There are actually 4 nurses holding him down.. One is hiding.

Daddy took me for a cruise to try and cheer me up.

My new accessory.

- Posted using BlogPress from my iPhone

Getting so big

Wearing my hat like daddy does.
So close, yet so far..
Sitting up like a big boy!
Standing on my own two feet!
Oh so tired!
Two big teeth!
Hey, give me that phone!


My cool guy shades..
My first mohawk..

- Posted using BlogPress from my iPhone

One year ago...

A major lesson we have learned  in this household is just how quickly life can throw you a curve ball. Last year on July 22, we went in for a routine ultrasound to check on our healthy baby boy. With excitement and impatience, we sat in the waiting room ready to see Parker again. It had been 7 long weeks since our last ultrasound, and Jason was at work for that one. Just three hours later we were sitting in a very strange waiting room in New Orleans waiting to see a doctor we had never met. This doctor would later tell us that our son would not live. He said those words with such certainty, and in that instant it felt like our whole world had come crumbling down. I can replay each and every moment of that day like I was an outsider looking in. Jason immediately lost it and cried for hours while I became a zombie, literally. I felt all of the color rush out of my skin. I couldn't form sentences, or put one foot in front of the other. Jason practically drug me out of the hospital because I could not move. In the days that followed, I didn't want to leave my bed, while Jason did more household chores than ever before because he couldn't sit still. When I was weak he was strong and vice-versa.

This year on July 22, we spent the day alone with our son. Our miracle baby. We played with toys, watched cartoons, and even had a visit from the tickle monster. I sat in awe of my son, who smiles and laughs more than most healthy children. He has brown hair and hazel brown eyes. He has my chin and his daddy's dimples. He can sit on his own. He can stand with assistance. He can kneel to play with toys. He has two bottom teeth. His favorite cartoon is Mickey Mouse.

He's spent 50+ days in the hospital and I cannot count how many times he's been stuck with needles. He takes medicine every morning and every night and will for the rest of his life. He needs a hero to give him a kidney. But most importantly, he is ALIVE.

So much has happened in the last year, but we count our blessings each and every day. We have a very long road ahead of us, but Parker is a fighter.