Still no transplant update

I realized its been almost 2 weeks since the cath and I haven't updated anything. There still isn't any word from the transplant team as to whether or not Caelen will be a candidate when the time comes for transplant. Half the team was at a conference last week, so the first time that Caelen would've been presented was this week, and that was if there weren't emergent cases in front of us. To be quite honest, I'm not pushing anybody for an answer. I want to live in my bubble and pretend that we can continue on our own path for a few more years.

Caelen has had an increase in casts since we got home from the hospital, it got to the point that they were almost daily. But he was clearing them and the team wasn't too concerned. What they said was, this is your new life. You have all the tools now to manage this from home, and we have 10 other kids at home doing the same thing. As long as he can clear them, go on with your plans. It made me stop and reassess things. They were right, why am I letting this keep us in a holding pattern? It's time to make the most of our time and let Caelen enjoy being home, while still keeping and eagle eye out for germs ;)

So I made a few changes this week in my attempts to combat the PB and here's where I attacked:

Allergies
Food

Martin changed all the allergy filters and I turned off the gas fireplace. I've also restarted Caelen's Flonase. Next, I stopped making fresh juices out of veggies and fruits and putting it in his g-tube. We know that lymphatic fluid leaking into his airways is what's causing the PB. So maybe he couldn't handle all of the fresh foods I was putting into him?

I don't want to jinx us, but, Caelen has been cast free since the changes. The team says that food and allergies aren't causes of PB, but clearly, something is working. So, again, I don't want to jinx things, but I'm praying that this works.

Aside from all of this, Caelen is doing well. He is starting the terrible 3's, spending many times a day in time out, and still not making headway on potty training. But, he's hilarious and adorable and so lovable that its hard not to laugh. He sings songs and tells me which music to play and which way to go in the car. He wants to sit in my lap and snuggle and read books and give me hugs. What's not to love?!

So the transplant team's decision can wait, cause right now, things are good and I have my little miracle boy at home and he's non stop love and trouble, just the way a little boy should be :)

Love,
Katye