Well it has been way too long since our last update. I am sure those who have been checking in for updates are curious as to what has been going on with our little man. Well, the truth is no news is good news. Dylan has been back at school and enjoying every minute of it. I feel great joy watching him take off right where he left and he will even be moving on to the first grade next year despite his 3 month hiatus. He loves to learn and has really been working hard to catch up. As far as Dylan's health goes he is doing fantastic.
Dylan had some minor issues with his EBV when we first got home. After some aggressive treatment with his antiviral medication we have gone two lab draws with negative results. This is great news as it lowers his chances of developing Lymphoma and that means everything to us. All of Dylan's liver tests are normal; that is right normal! He is growing and thriving and really turning into a little character. Noah and I were discussing it the other night...Dylan is just coming into his own. I see his face light up and he has this amazing energy about him now. Dylan looks nothing like he did four months ago. As his parents Noah and I are enjoying every moment of it. I feel like Dylan is finally LIVING life.
We also have some pretty big news. Something I never would have imagined a year ago has happened. Noah and I are expecting another bundle of joy! When Dylan was first diagnosed I had written off having another child. I mourned the loss of that dream after his Kasai realizing Dylan was way too much work to even consider adding another baby to our lives. We lived almost six years with a chronically ill child. There was nothing easy about Dylan. About eight months ago Noah and I decided that we couldn't put our lives on hold anymore. At this point Dylan was doing great and had not had any major issues for years. Maybe it was time to try for another one?
On October 21, 2010 Dylan reminded us why we had held off on siblings for him. After Dylan's GI bleed, losing half the blood in his body and a four day hospital stay we were quickly brought back to reality. Any thought of more children was again put on hold. It felt like defeat, once again our dreams put up on the shelf. This decision was not an easy one to make. When you live the life we have, there is a lot of fear involved with decisions of this magnitude. Everything we do can and will affect Dylan. With Dylan's transplant behind us and his health finally moving in the right direction we felt right about expanding our family and giving Dylan more normalcy for once in his life.
Before he was healthy it scared me to think of all the "what-ifs". I tortured myself with all possible scenarios. In the past I always felt uneasy about moving forward. My biggest fear was what would happen if I had a baby and Dylan needed transplant? Who would I be with? How could I decide to split my time? Now that Dylan is healthy I feel a huge sense of relief. I actually sleep at night. I can leave him at school without a crippling fear of the unknown. It is really hard to explain to people. It is not to say that they won't understand, but if you have never watched your child fight for their life and struggle to stay alive it is hard to truly grasp the feeling. Dylan is by no means out of the woods. We are only just about four months post transplant. The first year is the most crucial and there is always a risk of hospitalization, but I feel like the worst is behind us.
It is amazing to feel like a "normal" family, doing normal things. I have been asked already what I want the baby to be or what I am hoping for. Boy or girl, I can honestly say that as long as this baby is healthy I will be over the moon. I am sure people think we are crazy for doing this so soon, but we could not be happier about this. We have taken the ultimate step forward towards being NORMAL...
-Amber
Dylan had some minor issues with his EBV when we first got home. After some aggressive treatment with his antiviral medication we have gone two lab draws with negative results. This is great news as it lowers his chances of developing Lymphoma and that means everything to us. All of Dylan's liver tests are normal; that is right normal! He is growing and thriving and really turning into a little character. Noah and I were discussing it the other night...Dylan is just coming into his own. I see his face light up and he has this amazing energy about him now. Dylan looks nothing like he did four months ago. As his parents Noah and I are enjoying every moment of it. I feel like Dylan is finally LIVING life.
We also have some pretty big news. Something I never would have imagined a year ago has happened. Noah and I are expecting another bundle of joy! When Dylan was first diagnosed I had written off having another child. I mourned the loss of that dream after his Kasai realizing Dylan was way too much work to even consider adding another baby to our lives. We lived almost six years with a chronically ill child. There was nothing easy about Dylan. About eight months ago Noah and I decided that we couldn't put our lives on hold anymore. At this point Dylan was doing great and had not had any major issues for years. Maybe it was time to try for another one?
On October 21, 2010 Dylan reminded us why we had held off on siblings for him. After Dylan's GI bleed, losing half the blood in his body and a four day hospital stay we were quickly brought back to reality. Any thought of more children was again put on hold. It felt like defeat, once again our dreams put up on the shelf. This decision was not an easy one to make. When you live the life we have, there is a lot of fear involved with decisions of this magnitude. Everything we do can and will affect Dylan. With Dylan's transplant behind us and his health finally moving in the right direction we felt right about expanding our family and giving Dylan more normalcy for once in his life.
Before he was healthy it scared me to think of all the "what-ifs". I tortured myself with all possible scenarios. In the past I always felt uneasy about moving forward. My biggest fear was what would happen if I had a baby and Dylan needed transplant? Who would I be with? How could I decide to split my time? Now that Dylan is healthy I feel a huge sense of relief. I actually sleep at night. I can leave him at school without a crippling fear of the unknown. It is really hard to explain to people. It is not to say that they won't understand, but if you have never watched your child fight for their life and struggle to stay alive it is hard to truly grasp the feeling. Dylan is by no means out of the woods. We are only just about four months post transplant. The first year is the most crucial and there is always a risk of hospitalization, but I feel like the worst is behind us.
It is amazing to feel like a "normal" family, doing normal things. I have been asked already what I want the baby to be or what I am hoping for. Boy or girl, I can honestly say that as long as this baby is healthy I will be over the moon. I am sure people think we are crazy for doing this so soon, but we could not be happier about this. We have taken the ultimate step forward towards being NORMAL...
-Amber
At 8 weeks along resembling something more like a tadpole...Baby Levy!
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