Saturday, September 28, 2013

And we are off...

For once, the Porche family managed to wake up, pack up, and leave on time. We got up at 4:30! Those of you who know me, know that being awake at that time doesn't exist in my vocabulary, so you should all be proud. We did our everyday morning routine of disconnecting dialysis, blood pressures, weight, and morning medicine. But of course we had to fit our morning cartoons into the agenda for the big guy too.


Packing everything we needed and organizing it into the car seemed to be a brain exercise in itself. We have both determined that when Jason goes back to work we need to invest in a bigger vehicle. We will have to return to Philadelphia every three months, so it will be a necessity. We look like the Clampets going down the road! 

*Disclaimer: bags were still being added after this picture was taken. :(

We decided that it was best to bring Parker's wagon with us. Last time we were in the city, we would stop at a store for a few necessities and end up carrying multiple bags a few blocks back to the apartment. His wagon will help us on our shopping trips. Also, it is good for him to get up and move around in the hospital a few days after surgery, but my OCD/germophobia has a hard time accepting hospital used items; therefore, we will bring our own. 

I must give my child credit where credit is due. He is honestly one of the BEST travelers ever! (He gets that from his momma by the way.) He is as happy as can be in the back seat. He loves just to look out of the window and see what's passing by. I can't wait until we are able to travel more with him!

I'll update more when we get to our first location. Here is our point of view at the moment, though. 


Wednesday, September 25, 2013

Community Support

I have to say that our family is extremely blessed to live in a community that acts more as a "family" than just a place to reside. The people here have stood behind us and supported us through the roughest period in our lives. Time and time again, we have gotten into a situation where we questioned how we would make it through alone, and time and time again, the community has reminded us that we are not alone. Friends, family, and strangers have come together to organize countless fundraisers. Businesses have stepped up and donated money, goods, and services. It seems that no matter how many times we say "thank you", it will never be enough. We honestly would not have been able to give our son the best medical care without the support of our community; therefore, Thank You! Thank You! Thank You!- times infinity!

Just recently we had a complete stranger contact us and offer to organize a golf tournament in Parker's name. I truly believe that he is an angel from god, because his timing was perfect. My phone literally rang less than a week after we found out that Parker would have to be treated elsewhere, preferably in Philadelphia. While my husband and I were determined to make it work one way or the other, his generosity has made that more possible than ever. The Million Dollar Shot Tour will take place on October 11, 2013 at TPC of New Orleans. The course is located in Avondale on the West Bank. There are still team slots available, as well as sponsorship packages. If you, or your company, are interested in forming a team, or sponsoring in any way, please contact timothy@milliondollarshottour.com for more information.


Last week we decided that our family needed to have our hair taken care of before we left. It's been a while since all of us had gotten our hair cut, and we knew that it would be best for Parker to have his short for surgery. So we decided we would all go in and get a trim. The lovely ladies at Port Salon fit us in to their schedules, and even refused to let us pay. This isn't the first time that they have done this for us, and I hope they know how much we truly appreciate it. We love their salon, and the stylists there. I went to school with most of them and have known them for years. I wouldn't trust many other people with my hair- which is why I couldn't let anyone in Philly touch it.

While we were in Philadelphia for evaluations, a friend text me about a local photographer who was hosting a competition on Facebook for a free photo session. She suggested that I enter the competition by telling me that the photos could be the last family pictures before transplant. I figured, why not? I went ahead and entered the competition, and gave our story as the "reasoning" why I thought we needed the photos. I don't win things very often, so I knew that the competition was a longshot. Technically, my name was not chosen, but the photographer generously offered a free shoot to us anyway. The week of the photo shoot, the weather was not very cooperative. Add to that Parker being dehydrated and grumpy, and you have a combination for disaster. He did not want to smile. He did not want to be put down. He didn't want to sit or stand by himself. He was just grumpy! We spent around 30 minutes taking pictures, and about 20 minutes of that felt like we were trying to get him to cooperate. Samantha, the photographer was amazing, though. She was quick, which helped out a lot, because he was not patient. Yet, she was patient with him throughout the entire thing. Not once did she get frustrated, and she had every right to. An hour after we got home, she posted the sneak peeks on her site and they look phenomenal!




Mr. Deroche, Mrs. Trahan, and Mrs. Usey- Thank you from the bottom of our hearts! Your generosity is amazing!

In the meantime, the students of H.L. Bourgeois approached a teacher and asked what they could do to show their support for Parker and I. As a school, they have decided that on the day of transplant, October 10th, they are going to "black out" the school in the color teal to show support for Parker. The idea has sort of spread now, so I am sharing this with all of you. On the day of transplant, please show your support for Parker by wearing the color teal. You have two weeks now to find the perfect teal item to wear or use to show support. The more creative, the better! We want to make a book for Parker displaying pictures of you showing your support. We have done this with all PKD and kidney awareness days. It's something that we hope to use one day to show him how many people stood behind him throughout his journey. You can share the pictures on Instagram (username Parkerjporche) or Facebook (Perfect Match: Patty's Present to Parker). This will also help us get through the day in the surgery waiting room. Your support has always given us strength.

Hopefully soon, we will be able to pay it forward and show support to those in need. You have stood by us unconditionally and we are ready to give that to another family!


Wednesday, September 11, 2013

We FINALLY have a transplant date!!

It feels like we have been going through the transplant process for what seems like forever. We started testing donors back in April, but had quite a few snags along the way. I am so VERY happy to say that we are officially having transplant surgery on October 10, 2013. I have a million and one emotions running through me right now. I feel overjoyed, blessed, anxious, scared, stressed, worried, excited, nervous... We can never thank Patty enough. We can never repay her for all that she is doing for us!

We will be leaving at the end of September. We are driving 21 hours over three days, and settling in before we have to report to the hospital.