Wednesday, December 25, 2013

Santa Clause is coming..

This year Christmas had far more meaning to us than it ever has. Our one and only wish was finally answered, and by such an amazing, caring woman. Parker has been given the greatest gift of all, and we could not have ever fathomed that his results would be so amazing.

If I go back in time to last year, Parker was so sick. We didn't leave the house at all Christmas day due to fever, breathing complications, and blatant refusal to eat. A few days later we ended up admitted to Children's Hospital with severe RSV, and came home with a feeding tube. This year we were able to spend the day at home with a happy, healthy little boy, who had enough energy to play hard all day long. Family and close friends were able to spend the day with us and I sat back and thought, "It doesn't get much better than this!".

We give all of you credit for where we are today. If it weren't for the power of prayer and the community rallying around us to show support, Parker would not be where he is today. So from our family to yours, Merry Christmas!

Tuesday, December 10, 2013

Two month Kidney-versary

Today makes exactly two months since my son received the most amazing gift ever, his new super kidney. Somehow, though, it feels like it's been 2 years. So much has happened in such a short period of time that I don't think we've stopped to remember how recent it really was. We left Philly on November 20th and made the long trek back home in record time. Honestly we were beyond ready to be home, and it was really starting to take a toll on us. Philadelphia is a great city, and we enjoyed the experience, but there really is no place like home. We got out of there just in time, too, because the snow has officially started. Just today they received 4-6 inches, and lets be honest, neither Jason or I know how to drive in that.

As soon as we got home we met with his new transplant team in New Orleans, and started adjusting to their protocol. They do quite a few things different here than our team in Philadelphia did. For instance, in Philadelphia, or goal for his tac level (the level of rejection medicine in his blood) was always between 8 and 10. Here in New Orleans, however, they like to keep the tac level between 10 and 15 during the first three months. This alone has been a lot for us to get used to. His tac level is critical- too little can allow the kidney to reject, and too much can be toxic. When his tac level came back at 11.4 last week, and they didn't lower his dosage, Jason and I were both crawling out of our skin. Another thing that our New Orleans team does different is administering a third prophylactic antibiotic called Valcyte. Valcyte is used to protect Parker against an infection called CMV. Once you contract CMV your body will retain the infection for life, which makes it extremely difficult to find someone who is CMV negative. This is why our team was extremely shocked that Parker's donor, Patty, was CMV negative. They said the odds of that are really rare. Our team in Philadelphia decided that since Patty was negative, there was no need to give the antibiotic, because he was not exposed directly to the infection from her kidney. The team in New Orleans, however, prefers to be proactive and administer the antibiotic for 6 months just to be sure. It's not a very tasty medicine, either, so Parker is still getting used to it. Right now we have appointments twice a week- one for clinic in New Orleans and one for labs in Thibodaux, but starting next month we will go to New Orleans twice a month, and do labs here in town twice a month. Basically it means that we will have one appointment a week. It will be nice for things to start slowing down a bit, especially since I will be going back to work.

 Last week we finally got all of our paperwork and evaluations completed to start our therapy sessions again. Parker has progressed so much since surgery that even his speech and occupational therapists were shocked. He will actually put food in his mouth now, which he would never do before. Actually, before surgery he would scream bloody murder if you came near him with food. We are still working with him to use a spoon and chew, but these are aversions that will take time and patience. He will use sign language to communicate several words now, such as "please", "thank you", "more", "all done", and "down". His comprehension and motor skills are above his age level already. For example, when questioned he can identify his shapes.

Parker has also come a long way with some of his previous anxieties. He is no longer afraid of water or grass, which was a very big issue for him before. He was afraid to walk through doorway thresholds, up stairs, or stand alone in an elevator. Now, he does all of those as long as he is holding on to something or someone. He used to run away from the dogs, all the while screaming out of fear. The tables have turned and now they run from him out of fear.

So far all of Parker's labs have been amazing. In the words of his transplant team in New Orleans, "his kidney is working perfectly". We truly could not have asked for anything better, and know how blessed we really are. We are extremely lucky that we haven't had an major complications along the way. If you don't see as many posts as before, we apologize, but we are out there living life now that we don't have a dialysis machine holding us back! It is so awesome!

Tuesday, November 12, 2013

Monumental Moments Part 2

The weather forecast for today called for snow. As most of you know, we don't see that much in Louisiana, so we were a little excited. When we got up this morning, though, we were a bit disappointed. There was no snow to play in, so instead we decided to go up to the pool deck to get out of the room for a bit. It is indoors, but is a glass enclosure. It's nice and warm, and you can see most of the city up there. Then we got an idea. The pool is heated! So, we took Parker for his first swim and he LOVED it! I cannot wait for next summer now. 

And of course we needed a snack after.

Needless to say, he is pooped! 

Sunday, November 10, 2013

One month Kidneyversary!

Today makes one month since Parker was given his super kidney! It honestly feels like it happened a lifetime ago, though. Things are so much different since the surgery, not only for Parker, but for our family. Our life no longer revolves around dialysis. It's amazing how much freedom we have to raise our child now. Before surgery, everything in our life- napping, feeding, errands, appointments, parties- was all dictated by one machine. On Monday I had the pleasure of shipping that machine back to Baxter. It was a bittersweet day in the Porche family! Now, we can do as we please as long as we bring his food and medicine with us, and that is such a relief.

Parker is doing so much better physically. I don't think that he necessarily felt bad before surgery, but only because he didn't know better. Honestly, we didn't know that he was feeling bad, because he never presented as a "sickly" person. Most people who came across him made the comment, "Oh you would never know anything was wrong with him", and it was true. Other than the feeding tube taped to his face, there were no obvious signs. Now that we see his energy level, and how fast he is progressing, we realize exactly how much he was being held down. He is full throttle, all day, everyday, now. For example, before surgery, he was barely walking. He only learned  how to about month before, and would take a few steps, get tired, and sit. Now, he is literally running everywhere, and climbing on everything. By 11:00 at night, Jason and I are exhausted, yet Parker is raring to go. Eventually, before midnight, we have to put him in his crib and let him cry it out. Some mornings he is up before 7:00 a.m., while before surgery he was occasionally sleeping until 11:00 a.m.

My baby is starting to really enjoy tasting new things. Anyone who has been around Parker knows that feeding and medicines have been a major frustration for us. If you even so much as looked at him the wrong way while holding food, he would go into a full blown temper tantrum. I mean the kind of tantrum where onlookers think you are torturing your child. There was a point where giving medicine was a three person job- two holding him down, while the other squirted medicine in his mouth and coerced him into swallowing it. Now, I am happy to report that he willingly takes all of his medicines by mouth. I ask him if he's ready to take his medicines, and he answers "eh", which means yes- or "I want" depending on the circumstances. He comes and sits in my lap and he opens his mouth waiting for them. He only takes 5 in the morning and 5 in the evening, which is less than he was on before surgery. It is such a a huge sigh of relief. He absolutely knows where the pantry is with all of the snacks. Its on top of the cabinet so that he cannot reach it. He raises his arms up to reach for it and the whole time he is repeating "eh, eh, eh". While he isn't chewing much of it, and hardly swallows any of it, the fact that he wants it is the biggest accomplishment of them all. He walks around with his crackers, chips, cookies, bacon, French Fries, chicken nuggets,  etc and he licks and slobbers all over it. Once it is slobbery and soggy, he usually throws it on the floor. This is something that we are trying to work on fixing before we get home, because I'm sure our dogs would enjoy every crumb of it. We've gotten him to try ice cream once, but haven't been successful since. He tends to like things that are dry and crunchy rather than wet, cold, or mushy. 

As for city life, well we are happy that we came here, however we are beyond ready to be home. I truly believe that everything happens for a reason, and that we were sent here to get the best care for Parker. I'm not saying that we wouldn't have gotten good care from New Orleans, but I thoroughly believe that this is where we were meant to be. We have made the best of it, and gotten out to enjoy it while we could, but there is no place like home!