But that doesn’t really stop people from asking us about what’s going on with the whole thing. And to be completely honest, ever since we found out our other son was not a match for Kyle, we’ve been hesitant about the whole thing.

To be honest, I know in my heart that if we proceed with the transplant we’re going to lose him. The odds just aren’t good that he’s going to survive it, let alone actually be cured from it.

It would be a little different if they told us that by doing the transplant, he has like a 95% chance of being cured of his disease. But they can’t say that. They have no numbers to give us. Heck, even if he does survive the grueling transplant, it may not do a damn thing. He disease could remain completely unchanged.

This is why the whole thing is so very hard for us to decide. People keep wondering when it’s going to happen, why we’re waiting, saying they would do it right away…but until it’s your baby’s life that you hold in your hands, you have no idea what it feels like to be in our place.

You have no idea what it feels like to know with all your heart that if you go through with it, you’re going to regret it for the rest of your life. Because that’s how I feel. I know if we do it, we’ll be saying goodbye to Kyle.

Yes, we’ll likely have to do it someday in the next few years, but not today. Maybe if we’re lucky, not ever.

But I cannot kiss my happy, growing, developing, sweet little boy goodbye right now. I cannot put him through chemotherapy and make him so very sick, and then put him through a transplant that has little to no chance of working.

I can’t do it right now. I don’t want to do it right now.

Kyle has always been an easy, happy baby, but since he started treatment there’s an even deeper contentment. It’s hard to explain this change. But from what adults who suffer from GD Type 1 (the non-neuronopathic type) have said, they felt awful before treatment.

Kyle isn’t able to put the way he feels into words, so you don’t ever really know how awful he feels. And the thing is, he’s been suffering from the effects of this disease since he was like 3 months old, so he doesn’t know that you can feel any different. Living with this, is all he knows, so he deals with it.

But now that he is getting treatment for the physical aspects of his disease, he’s finally feeling the way he’s supposed to feel, and it shows.

His development has been progressing too. Where he couldn’t really crawl before, he’s getting around using his knees and arms. And what I never noticed until after his treatment, was that the size of his belly was actually preventing him from keeping his knees on the floor. Now that his belly is smaller, it’s easier for him to use his knees to get going.

His appetite has increased, and I can see his face filling out. Just the other day he ate 3/4 of a 7.5 oz jar of strawberries, and then 10 minutes later he polished off an 8 oz bottle. I couldn’t believe it! And I’ve noticed that for the past couple of nights he’s been drinking 8 oz of milk, as opposed to the usual 4-6 he usually drinks at one time. This is great news!

I’m working on getting him to eat more foods. We’ve done toast with butter, and though he can pick it up and take a bite, his bites are too big…so I break off small pieces and put them in his mouth and he eats them. He’s still a stinker about what baby foods he’ll eat. He only likes strawberries and blueberries, but I can’t really blame him because most of the food taste like crap, lol!

He’s also talking more. More baby babble and plenty of “dadada”. I’ll even ask him where “dadada” is, and he’ll look around to find him, and when he does, he breaks out into the mother of all smiles. There’s a new light in his eyes that wasn’t there before. It’s like he finally feels well enough to really live.

You know that awful feeling you have with the flu, and you just don’t want to do anything but lay around and sleep…now imagine if you felt that way 24/7. That’s kinda like how all these kids with Gaucher Disease Type 2 and 3 feel without treatment; they adapt and deal with is so well because it’s all they know, so it’s hard for anyone to really know there’s anything wrong with them.