And because he has made so much progress, they want to see him in 2 weeks instead of 4. We’re going to work on getting him onto fours, and work on standing and walking more. He does get up on all fours, but instead of putting his weight on his hands, he uses his forearms instead. He crawls with moving one leg ahead and then the other, and sometimes he will pull up on his knees and doing a rocking kind of thing. But he loves to walk, and he does it perfectly. He holds my fingers and walks like a pro, and he’s getting faster too.

We’ve found with standing that he can do it, but he doesn’t want to stand still. He likes to be moving, and so gets upset when you hold him in the pelvic area so he can’t move while he’s standing. So we’ll keep working on that for short periods of time. They truly believe that Kyle will be caught up in no time, it’s just a matter of getting him stronger.

I also mentioned to the therapists that Kyle’s neurologist suggested that we start Kyle in speech therapy around the age of 2. They told me that they will put the referral in right away, because they like to start around the 18 month range. They may not be able to do a lot with him, but they can see him, make suggestions to me, and get things rolling in that area. And then by the time he is 2, they can really start to work with him. But the sooner we get moving on that, the better he’ll be.

He says dada and it sounds like he says ma and yes sometimes, and then lots of baby babble. He understands “yes” and “no” and will shake his head no, or move his head up and down for yes. He understands “up” and will sometimes reach a little, so I know he knows what “up”means even if he’s not fully reaching his arms up to me.

I’m positive that Kyle will continue to make great strides in his development, and hopefully he’ll be walking and running by the time his 2nd birthday rolls around.

According to Genzyme, current inventories of Gaucher disease treatment Cerezyme are not sufficient to meet global demand. The plant will not return to full operation until the end of July, with expected shortages beginning in August and inventories stabilizing by year end.

This is terrible news, and I’m praying that enough Cerezyme was ordered for Kyle so his treatments will not be effected. I emailed Kyle’s doctor in Toronto asking about it, so I’ll post when I hear something.

If his treatments are stopped because of a shortage, we’re going to be back at square one, and my sweet little boy is going to suffer. Without treatment every two weeks, Gaucher cells will continue to build up in his liver, spleen, bones, and other major organs. His platlets will drop and so will his appetite, and he’ll feel awful – again.

Worst case scenario is that shortages begin in August and Kyle’s treatments are halted, which means he may go without treatment for possibly 4 months if inventory stablizes by the end of the year. Which is why I’m praying that there has been enough Cerezyme ordered for Kyle to keep him going for the next few months.

I’ll post an update when I know more.