Happy Birthday Sir Oliver!

Holy crap. Sir Oliver has been a part of Jaisal for a year now (well a year and a day technically). I really can't believe a year has already gone by. I think it's only appropriate to do a recap.

Here's what Jaisal looked like right before going into transplant.  Our tiny little guy. Honestly not sure how we were smiling since I know my stomach was in knots and I was freaking out about sending little man into surgery. Also, I really had to think about it for quite a while before I posted this picture because my hair is HORRIBLE (I am blaming hospital hair syndrome. It's real. Look it up.), but this is the absolute last picture of Jaisal before transplant so I had to use it to be accurate.

One year post-transplant he is a totally different kid. He is in the 60th percentile for height (and I think he'd fallen below the 50th before transplant) and weighs 29.5 pounds, the 60th percentile (I know he never made it over the 3rd percentile pre-transplant and a lot of that was liver, spleen and fluid weight). 

I still love seeing his white eyes and not yellow skin. It's one of the most beautiful sights in the world.

Other stats:

• In the 14 months after Jaisal's BA diagnosis and before his transplant, he was hospitalized 10 times (not counting when he was hospitalized when we thought Kirk could be his donor). 

• Since transplant, Jaisal has been hospitalized 5 times, twice for planned biopsies. Not as few inpatient stays as I would have liked, but still a significant decrease from a year earlier. Honestly even with these hospitalizations, our lives have been pretty normal. We actually went 7 full months without a hospitalization. That's pretty freaking outstanding.

• Pre-transplant  - EVERY time Jaisal got a fever we had to go to the hospital in case it was an episode of cholangitis. Even though Jaisal's two fevers post-transplant have landed us in the hospital (RSV and neutropenia), we were allowed to treat him like a normal kid first and then when concerns increased taken him to the hospital. That's novel to us.

• Jaisal is down to six total medications/vitamins/nutritional supplements. The absolute number is not that much lower than post-transplant, but the number of doses is. The meds actually don't phase us at all anymore.  

• After clinic today we are back to once a month lab draws and clinic visits.  If things go smoothly, we can revisit weaning more meds and spreading out appointments. We'll keep hoping.

Of course all of this wouldn't be possible without the Vogels. Plain and simple. We got a fabulous fun year with Jaial and a lot less stress over medical stuff because they were willing to let little man have Sir Oliver. There is never going to be a way for us to show how thankful we are, but we will keep trying. One small part of that effort was this video to Scott last night.

(Note - the dangers of using a cell phone take video is that you risk the loudest sound in the video being the notification when you receive a text message mid-recording. Uh oh indeed.)