Tuesday, September 18, 2012

Being sick..

Is absolutely no fun! I hate to see my "punkin" feeling miserable. We spent the day at the pediatrician's office and Parker has an ear infection, bronchitis, and sinusitis. He received a shot while we were there, an antibiotic, and is starting breathing treatments. This is the first time he truly has symptoms of an illness. He had the flu in March, but only had fever and fatigue. This time we have the snotty nose, congestion, cough, and rattle in his chest. His poor ear looks like it's about to be pulled off in the mean time.

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Sunday, September 16, 2012

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!

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Saturday, September 15, 2012

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.

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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.

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