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..

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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.  

Making the best of the hospital

So many toys!

My morning Mickey Mouse time!

Yucky weather..


Playing airplane with daddy!

Who took my milk?!


Finally asleep. He screamed to eat until he was hoarse!

Shhhh aunt sandy helped me out with that nasty IV! Don't tell the nurse!


I'm bailing out!
I've had a long day..


I missed my chair so much !


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Never goes as expected

Well today was supposed to be Parker's G-tube placement, but as usual nothing goes as expected.

First off, let me say that dropping your child off into a scary operating room with complete strangers, who you are supposed to automatically "trust" with your entire world, is the worst feeling ever. I can't even imagine what I will be like for transplant.

After we left Parker, we went to the waiting room and sat there- not so patiently. Within 20 minutes the surgeon was out and looking for us. I knew something wasn't right. He explained to us that they weren't able to place the peg tube. Apparently, Parker has scar tissue or "something" that is obstructing the area where they need to go through the stomach.

My first thought was, "something"? Apparently, when Parker had his kidneys removed it left a large open area for his organs to shift around, and it could very well be his intestines or another organ.

Second question, "What are the options?".

This feeding tube isn't immediately necessary. It's supplemental, because he needs more calories, so the least invasive the better. That choice would be an NG tube through his nose. As much as I do not like the thought of Parker having a tube sticking out of his nose at all times, this is the easiest for him. The problem with this is that he will pull it out!

Option two is a major surgery. They would have to cut a large hole in his stomach and he would have to be on hemodialysis for 6-8 weeks. All of his doctors- as well as Jason and I- are against this. They are looking for other options as we speak.

So the outcome is that in 2 weeks we will have to choose the NG tube. or whatever else they come up with in the mean time. For now, though, we are heading home!

As always, thank you all for the prayers. Hopefully, this is a sign and Parker will start chugging milk and not need one at all. Well, there is always hopeful thinking, right?


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Surgery #4

Well, we were admitted to Children's Hospital again today. Parker is having his fourth surgery tomorrow. They are putting a feeding tube in his belly that is typically called a g-tube. We always knew that this could happen, and as of lately, Parker's growth was beginning to fall off the charts. Therefore, his team opted to put in a feeding tube to get more calories per day into him. This will also assist us in getting medicines and fluid down without a fight. For those of you who know us, you know that the medicine battle was starting to get out of hand. We have fought against this for so long, but we know now that it truly is necessary and will be a blessing. Chances are that he would have needed one after transplant anyway. What most people do not realize is that Parker will receive an adult kidney; therefore, he will have to consume 2 liters of fluid a day to keep that kidney hydrated. That's not including what he will have to eat and drink for nourishment. It would be extremely difficult, if not impossible, to get him to take all of that by mouth with no arguing. Surgery is scheduled for tomorrow at 1 p.m. Please keep us in your thoughts and prayers as always. Keep Jason and I in your prayers tomorrow morning as well. They are making him NPO early in the morning, which means he cannot have any food. My poor baby will not be happy about this!

9 months old! :)

Wow! It sure has been a long time since I've posted here. I guess the only explanation I have for that is that life has been pretty "normal" up until now. We were doing our best to enjoy it and indulge in every new experience. This entire post will be an update of his progress...  As of March 30, we have a big boy who sits up all by himself!

He has also made his OT very happy by playing with his toes for the first time..or as we call them, his "piggies".

He has two teeth that have been bothering him for months now! These boogers don't want to break the skin for anything!

 His favorite toy (other than my phone) is his jumper..

Parker experienced being in water for the first time.. and HATES it!
He isn't allowed to have typical baths, he only gets sponge baths. Hopefully, this water phase ends after transplant.

As you can see, we have been pretty busy at home, but Parker is being admitted for surgery tomorrow. The time has come that he needs a feeding tube to keep up with his calories. He will also need this after transplant to make sure that his new kidney receives enough fluid. This just means we are one step closer to starting the transplant process. He was 6.8 kg this morning. Once he reaches 8 kg we can start testing potential donors. Hopefully this feeding tube will help us to get there even quicker! Keep us in your thoughts and prayers for the next few days. Surgery is Friday, so I will keep you guys updated! Once again, thank you for all of your support.

Weekend in the hospital...

Who doesn't love spending the weekend in the hospital? Well, February 10th and 11th we did just that! Parker has been overly irritable lately. Every night last week he was up all night screaming. It seemed like he was inconsolable. For any other child, this would be written off as colic or teething, but for us it means a weekend in the hospital. His team had us bring him in and they did a few tests. He tested negative for RSV and the flu, thank god! He's had this damn upper respiratory problem for what seems like weeks now. They did blood work and took a specimen from his dialysis catheter. We stayed all weekend because they were under the impression he may be growing peritonitis. I knew better, though. His drain fluid was clear, he wasn't running a fever, or vomiting. I can tell them that I'm 99% sure it isn't peritonitis, but after the last spell of it, I'll never say 100%. So, we stayed. And I was right. It was not peritonitis! Better safe then sorry, though. They did come to the conclusion that he has a calcium blockage, though, which is like a massive constipation, and he has to pass that on his own. Guess we're in for a long ride.