kidkennelly philip: Indescribable Feelings

Have you ever met someone throughout life that you just look at them and say, man they "get it". They are full of life, genuinely happy, all smiles. I've been around a few and always found myself envious of them. Why are they so happy all the time? Maybe they've had to deal with some pretty awful circumstance and they've come out the other side shining or maybe they were just born that way, it's in their genes. Either way I've found myself drawn to know why and longing to be that kind of person. And now I find myself looking at my son, whose only almost three years old, and I can already see this quality emerging in him.
Since his transplant and coming home, me and Dan have seen this amazing little person come to life.
We can't find the words to describe how he has changed but I can definitely see why some refer to their transplant as a re-birthday of sorts. Looking back, we never realized how crumby he must have felt all the time. He was always a funny, happy kid but his whole being has transformed into this spunky, hysterical, talkative, outgoing little kid, that just amazes us everyday with what he does or comes out with. If you already didn't know he had a transplant just 4 weeks ago you would never know it by looking at him. He has 10x more energy, wakes up happy and smiling, basically sleeps through the night, doesn't itch, and is so lovable all the time. He always comes over and says I'm going to give you a BIG HUG and then squeezes me so tight. If you ask him how he feels and how his belly is, he just might lift his shirt for you and tell you it's all better now! He takes all of his medicine like a champ and will also tell you it makes his belly feel better. Even the yucky ones!
And he is on several medicines several times a day. How he puts up with it I don't know. And even when he doesn't want to take them he easily gives in and does what he has to do.
Here is a quick list of what he is taking.

1. Prograf 2x/day- Anti-Rejection which is one of the most important ones he is on. It is important it is taken at specific times exactly 12hours apart so he has a balanced level of the medicine in his body.
2. Cellcept 2x/day- Anti-Rejection
3. Prednisone 1x/day- Anti-Rejection
4. Pepcid 2x/day - Antacid to help irritation in tummy from steroid
5. Ursodiol 2x/day - Makes bile thinner and flow easier
6. Bactrim 1x/day- Antibiotic to help prevent a lung infection called PCP
7. Valcyte 1x/day- Antiviral medication to prevent/treat viral infections like CMV(cytomegalovirus) or EBV(Epstein Barr)
8. Nystatin 4x/day- Anti fungal to prevent thrush. He swabs his mouth 4 times a day with this.
9. Baby Aspirin 1x/day - prevent blood clots
Also was on Magnesium and Lasix but was able to stop those this and last week.

He will be the most immuno compromised for the first three months. Meaning he will be the most susceptible to various infections during this time. So we just have to be a little careful with who is around him and where we bring him. No crowded malls or stores, no sick people, no kissing or excessive hugging from visitors and hand washing, hand washing, hand washing!!! I have anti bacterial placed all around the house in every room LOL.
Our team is pretty laid back on the other hand and want him to start living a normal life. Isn't that the reason they do the transplants in the first place? To let these kids live normal active lives. They don't want him rock climbing just yet but he's definitely ready to play baseball!
Dan is feeling great too. Maybe getting stir crazy because he has such restrictions on his activity. Hopefully in the next few weeks they will start to lift some restrictions.
We want to thank everyone again from the bottom of our hearts who continue to pray for us and support us. A special thank you to the FDNY Fire Family Transport Foundation (www.firefamilytransport.org) and the guys in Dan's firehouse who volunteered their time to drive our families back and forth to the hospital and continue to drive us for follow up visits twice a week. Thank You so much!