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! 

Typical two year old stuff...

Today was Parker's first procedure ever that was not kidney related. For once we had to address the "typical" two year old issues. For a long time, Parker has had a lot of fluid build up in his ears, so much so that he has failed portions of the hearing test because of it. Today his ENT placed tubes in his ears to help the fluid drain. This was by far the quickest, easiest procedure he has ever had done. They took him to the back without giving him anything, and he went with them like a big boy. I was proud and sad all in the same moment. We weren't in the waiting room but 20 minutes before the nurse was calling us that the procedure was done. We met with the doctor first who said it all went perfect. His left ear was completely blocked with fluid, but his right ear had actually cleared up some. Then we got to go and see Parker. When the door swung open, I immediately heard him screaming. Initially I thought it was because he woke up and we weren't there, but I was wrong. Even seeing us didn't help him calm down. The anesthesia has a side effect that causes some children to scream and fight until it wears off. Parker apparently fell into the category. Needless to say it was very long hour in recovery. Luckily they didn't use general anasthesia with an IV, instead they used the mask, which is less invasive and doesn't last as long. We are home now and he is back to himself already. 

Before:

After:

A new year, new beginning...

The year 2013 was so phenomenal for us that it is hard to imagine how this year could ever compare, but we are ready for new beginnings. Parker is officially out of the "danger zone" with his immune system. For twelve weeks after transplant he was considered highly susceptible to anything and everything. The reason for this is that he received high dosages of IV anti-rejection medicine right after transplant. Those doses were strong enough that they knocked his immune system down for three whole months. We are extremely lucky that he has stayed as healthy as he has, especially with the dangerous flu season that has struck our area this year. Slowly but surely the bubble that we have tried to keep him in is fading away.

 Parker is starting to eat more and more. Just yesterday he completely ate half of a container of M&M minis. He let them melt in his mouth and actually swallowed them. Up until this point he would simply lick them and then discard them, so this is a huge milestone for him. The big question that EVERYONE asks over and over again is "How long does he have to have that tube?". The simple answer to this is- as soon as he can drink his required daily volume. It is an adult kidney, therefore, he has to drink the same volume that an adult is supposed to drink, or he risks damaging the beautiful new kidney that he was given. Each day he has to drink nearly a half gallon of fluid, and being that he wasn't a big eater or drinker before, he's having some trouble with this. We are working with some of the best therapists around to get him to eat and drink more, so hopefully he will have it out by end of summer.

In normal two year old fashion, he is into everything under the sun. He is climbing and digging in places that he never could before. His new thing is climbing on and off of the sofa as quickly as he can. He also loves climbing on and off of his scooters, which was a bit of an issue for him before since his legs weren't quite long enough to get over the scooter. He loves busting in on you while you are bathing, especially now that he knows how to open doors. So if you come to our house for a visit, be sure to lock the bathroom door behind you or you may have a surprise visitor.

His daily schedule is much more flexible now without the dialysis machine, so this weekend, while we had a warm spell, we took him to the zoo for his first trip. He loved it! Walking the entire zoo is something I didn't think that he would ever have the energy to do, but he proved me wrong. He spent very little time in the stroller, and loved climbing on the railings to see the animals.

Looking back at old lab reports from our dialysis days, I can't believe how healthy my baby is now. Things that fluctuated severely high or low before, like Potassium, Phosphorous, Sodium, and Calcium are completely stable now. His creatinine is holding stable at 0.1, which is near perfect. Last month he even had a report of less than 0.1, which is nearly unheard of! His doctors are all mind blown by this, because it's definitely not the norm for them. At the end of March we get to discontinue several medications and go to once a month clinics at the hospital, which will be wonderful!

We are finally dealing with "typical" toddler health issues. Parker has consistently had fluid build up in both of his ears for some time now. It is severe enough that he has failed parts of his hearing test because of it. It was always pushed to the back burner due to dialysis and transplant, but next month we finally get to correct it with tubes. Hopefully, this will do the trick and my baby will start babbling out new words soon.

Since transplant he has become such a "big boy" compared to before. This is just a few pictures to show you how big he thinks he is. 

His big boy sofa..

His big boy hair cut..

His new "cheese!" face..

I am a big boy and I don't need a diaper!