Monday, January 2, 2017

ARPKD and what it means for the future of our family..

As most of you know, at 30 weeks gestation Jason and I received the devastating news that our first pregnancy was not going according to plan. Parker was diagnosed via ultrasound with Autosomal Recessive Polycystic Kidney Disease. It's a mouth-full right?

When Parker was born, and eventually transferred to Children's Hospital, we met with a geneticist. She ran extensive tests on Parker and thoroughly explained the details of ARPKD to us (mostly in terminology that we didn't understand). The odds of this happening to us again were likely a 1/4 chance, but since Parker's results weren't straight forward, Jason and I needed to be tested as well. At the time that didn't mean much to us. We were fighting day and night for Parker, so the distant future wasn't something we could concern ourselves with at the time. Not to mention, these tests were pretty costly. Our main priority was, and still is Parker's health and well-being, but he's 5 now and pretty stable, so we've been discussing expanding our family more and more. This Summer we finally moved forward with getting our parental genetic testing completed, and the odds were confirmed. Any child that Jason and I conceive would have a 1/4 chance of actively fighting ARPKD. We won the genetic lottery, right? We are in contact with many ARPKD and kidney related families. And we wholeheartedly respect each families choice of how they expanded their family, but for US we just can't see knowingly risking that with another child. So this new information, which we were sort of prepared for, has kind of thrown us for a loop on IF or HOW we would expand our family. The only conclusion that we can both agree on is adoption.

Adoption, however, is probably the most complicated thing I have ever tried to research. I mean I'm pretty sure that this could legitimately be a chapter in a college level Quantum Physics class. There is open adoption or closed adoption. There is domestic adoption and international adoption. There is the foster system, independent adoption, adoption agencies, and the crazy people on Craigslist trying to scam you out of your entire savings account. We have been researching this for 2 years now and are no closer to understanding what is best for our family, emotionally and financially, than we were when we started. We aren't even certain that there is an adoption route that is both emotionally and financially right for our family, but it's something we are determined to find out.

What we are asking of you guys is if you have had a personal adoption experience, know someone who has had a personal adoption experience, work in a field that gives you hands-on experience with adoption, know someone who works in a field with hands on adoption experience, know a church or social worker who has a program that can point us in the right direction, etc.. anything at all that will help us, please share your stories with us. We want to know the good, the bad, and the ugly. We want to hear pros and cons of every aspect. At this point, taking out a billboard sounds like the least complicated option (j/k...), so we appreciate all of the help!

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Santa came for ME?!

The He He The The This year has by far been one of the best Christmas' ever! Parker truly got into the Christmas spirit and was obsessed with all things related. He was adamant that our Christmas tree had to have a star topper. Santa Clause absolutely NEEDED cookies and milk. The reindeer would be so hungry after their long journey, that carrots were the only thing that could fill their bellies. We couldn't see enough Christmas lights and always needed to see "another one". It's the first year that he wasn't too sick or too anxious to enjoy opening his presents and playing with them. We had an amazing holiday and we hope you and your family did too!

Halloween 2016

Saturday, August 27, 2016

Parker's 5th Birthday Party

Five years ago our lives were turned upside down. Every day since then has been nothing short of a roller coaster ride. Our boy definitely keeps us on our toes, and keeps things interesting. We are the luckiest parents in the world, and wouldn't change one thing about it. Here's to five years of miracles!

Friday, May 20, 2016

Parker's last day of Pre-K

Well, we survived our first year of school. While it came with lots of obstacles, germs, and hospital stays, he still advanced leaps and bounds. His speech has improved dramatically, as well as his socialization with other kids his age. One year down 13 more to go! 

First day vs. Last day

Monday, February 29, 2016

The month of Pneumonia

I swear it feels like we live at CHNOLA these days. We are on our 6th hospital admission since September, so I'm pretty sure they should just reserve a room with Parker's name on it. I mean, we were literally just here two weeks ago. The nurse sort of chuckled when she came in to greet us and said "Parker, Parker... Did you miss me? Didn't I just see you a few weeks ago?" Then she looked at me and said, "Mom I think we have the file under control, I won't make you go through that again. Nothing has changed, has it?" Nope. Nothing has changed in 14 days.. promise!

The day after Mardi Gras we came in to Children's with a nasty cold-like illness. I thought he just missed his buddy Cooper, who was here with RSV, and wanted to come hang out with him. They did bloodwork, viral panels, and chest x-rays. Low and behold Parker's x-ray showed bacterial pneumonia. We spent several days here getting IV antibiotics and fluid before being released with a 10 day prescription of oral antibiotics. Only a few days after his oral antibiotics finished, he started with the same symptoms again, hence the reason we are back. Sure enough, the x-ray showed that the bacterial pneumonia had not shrunk in size, and he needed another dose of antibiotics.

I told Parker that if he wanted to play hooky from school that bad, he could have just told me and we would have stayed home. He didn't have to land us back here. As you can imagine, this cold/flu season has taken a toll on all of us. His anxiety is through the roof, and is showing signs of PTSD due to all of the medical complications he's had. Mom and dad are exhausted both mentally and physically. Every day/night that we spend in the hospital is emotionally taxing. No parent should ever have to hold down or force their child through so many procedures. We just need a break. Please take this into consideration when you go out in public while sick. The simplest of sniffles and sneezes affects our son much differently than it does the general population. He deserves a break and so do we, so please keep your germs to yourself!