If you've read my blog before, you know I hesitate to actually write how good Philip is doing because almost every time, I jinx it and he ends up being hospitalized for something.
But when I started this blog I made a promise to myself, to keep it as up to date as possible.
When we first learned Philip had Biliary Atresia, I scoured the internet for hours, looking for personal experiences, outcomes, whatever they may be. I found a few blogs but so many were years out of date. I longed to see how these kids were doing long term. Did Philip have a chance at a normal life? What was in store for us? So often I would only see the worst stories and outcomes. And that's the kicker about Biliary Atresia, no kids journey is the same. It is so hard to talk and compare your child to others because all of their paths are so different. There is no set path. I only hope this blog can be a little glimmer of hope for a parent with a newly diagnosed baby.
Last week Philip had liver clinic for his 1.5 year post transplant appointment.
One and a half years...can you believe it?
We've had a good few moths since his bowel obstruction and haven't needed to contact the doctors for much since then.(Knocks on wood again) I should get used to carrying around a piece of wood with me the way I've been knocking lately!
Dr. Chu said she always asks Fiona(Nurse Coordinator) if she heard from us. She said they were going through a little bit of withdrawal from hearing from us. But she said that's wonderful. That is what they hope for. They need to take a step back and hope he is doing so well that they don't need to hear from us. He had labs done and his liver numbers are great. He needs to repeat blood work in 4 weeks because they couldn't get a few labs they wanted. I'd say Philip has had hundreds upon hundreds of blood draws over the last 4 years and they never get easier! He is getting stronger and fighting harder now. He wiggled and squirms and it usually take a few people to have a successful draw. We don't have to go back to clinic though for 3 months! He generally has no restrictions, although we had planned a trip for Great Wolf with Danny's cub scouts and she said its probably not a great idea for Philip to go. The water can be a host of many bacteria and we know when he gets something, it hits him hard. They would like him to wait a little longer. Its never easy having to make decisions about cancelling trips or figuring out whether to leave one out. Its not fair either way to either of the boys and its something I struggle with having to decide.
I've been having some other feelings too. Except mine are more of the feeling of waiting for the other foot to drop so to speak. When things are going good, its hard to get fully comfortable in that space. I'm so afraid that as soon as I do, something else will happen and we start all over again.
In the meantime, we will take every healthy second and not take it for granted!
Philip started Pre-K and played soccer over the fall. I really can't imagine how he would be if not for transplant. There's no way he would have been able to participate in normal activities that he has been able to do so this year.
We remain thankful to everyone along our journey and for organ donation!
