One year ago today...

One year ago today our lives changed forever. At the time, we couldn't possibly comprehend exactly what that meant. Our lives revolved around machines, medicines, feeding schedules, shots, and constant vomiting for so long that it was our new normal. We knew that our life after transplant would be better, but never in a million years did I imagine it could be this good. 

In the last few months, Parker's eating has increased dramatically. In fact, in the last couple of weeks he has started to eat and drink enough by mouth that we only have to give him water through his tube at night to keep his kidney happy. It's such a big difference from the days of revolving our daily schedules around making sure he went to sleep at a certain time for nap and bedtime in order for him to get in enough food. It was a carefully orchestrated schedule and a serious math formula to figure this out. 

Because he is eating so well now, Parker is finally growing. Before transplant he was very far from being on the growth chart for weight and height. Now, however, he's finally in the 50th percentile for weight, and the 10th percentile for height. 

Before:

After:

Parker was finally able to start daycare, and has improved in his speech by leaps and bounds. Before transplant he was only saying "momma" and "dada", but now he is stringing together multiple words. For instance, today I gave our dog, Pheobe, a bath, and Parker very excitedly said, "Momma, Pheobe splash splash!" 

Looking back at all of the posts, pictures, and blogs from this day last year has dug up all of the emotions as well. We are so blessed to have such a selfless person give us the gift of a new life. We are beyond blessed to have so many friends, family, and community members stand behind us on this journey. Never once did you guys leave our side. We are spending our weekend celebrating the healthy new life our child has, and we hope you take time to do the same. 

Happy Birthday!!

Today our son turns three years old. The irony in that sentence is that over 3 years ago one individual man looked us dead in the eyes and told us we would not be able to keep him after he was born. I look at my son every day with awe, and every night I thank the good lord for one more day with him. He has defeated all odds and has endured more in his lifetime than any grown adult that I've ever met. It hasn't always been easy, and many days he pushes every button I have, but I wouldn't change one nanosecond of my time with him. He has grown into a shy, loving, independent boy who loves Cars, Toy Story, and monster trucks. He has attitude and spunk, but knows his manners when necessary. He is our pride and joy, and we want to wish him the best birthday ever!  Happy Birthday Parker Joseph, we love you to the moon and back!

Big boy status..

One of the most frequently asked questions that we receive is "When can he get rid of that tube?". Most times people see a picture of him without it and assume it's gone forever. I would be lying if I said that this didn't bother me. Honestly, most times it does more than bother me. Eating has been one of the most frustrating aspects of kidney disease. Dialysis, medicine, doctors appointments, and all of the other things that come with this life were difficult, but feeding is downright frustrating. It's hard to remember a time when my baby willingly ate an entire bottle, but he did. In fact, for the first year and half of his life I fed him every three hours on the dot like clockwork. Now, the smallest feeding victories feel like Olympic gold medals.

 Two weeks ago, Parker's team suggested that since he was finally chewing and swallowing food that we should experiment a bit with his feeds. We completely cut out his nap time feed through his machine in an attempt to build his appetite. There were strings that came along with this, though, a set of requirements that he had to meet. As long as he was eating 400 calories of food, and drinking 500 ml's of fluid,we didn't have to return to nap time machine feeds. I'm proud to say that in those two weeks, even with his first cold, we did not have to use his feeding machine during the day. In fact, today he ate an all-time record of 850 calories, and actually ate two whole cups of yogurt/fruit blend with a spoon. This is monumental for him! Up until the last two weeks he would not eat anything at all with a spoon, much less something cold and puréed. The only thing we could get him to eat was crispy, crunchy snacks like chips, goldfish, and cookies. 

So now we are working toward a new goal. If he can eat 1300 calories and drink 1100 ml's of fluid, mainly water since that's all he will drink, everyday for a month straight, we can take the tube out. So, the answer to the infamous question is, when he meets his calorie and fluid goal-given by his doctors-consistently, then we can take out the tube. I promise you all that the day that happens, I will be screaming from mountain tops, and you will all know that the tube is gone for good. Seriously, the whole town will hear me. I Promise! 

Our six month kidney-versary

At exactly this time six months ago, I was sitting in the waiting room, not so patiently waiting for a doctor to come out and tell me my son was going to be okay. In the waiting room filled with people there was a single television with all of the patient's names and statuses listed. I routinely checked this television minute after minute, so scared that I would miss something. Finally the time came that his status changed to "recovery". I squealed loudly in front of the packed room, not caring a bit what anyone else thought. Minutes later there was the doctor standing there very serious, yet proud. My baby is such a trooper! He has been through so much in his life, yet he is one of the happiest babies ever. Today we lose the final two antibiotics he has been taking. The three medicines that he will be continuing, he will have to take for the rest of his life. I am proud to say that he takes them like such a big boy. I am so blessed to be his mommy!