Kyle is doing really great. He goes to therapy once a week, where he sees his OT or PT, or sometimes both of them together. He also had his speech therapy assessment in early January, and she really believes that because Kyle seems to learn things quickly, doing speech therapy will be beneficial for him.

In fact, I found out that other than talking like he should be at his age, he is communicating in so many other ways and is pretty much on target for his age. He understands when I point and tell him to do something, he can also repeat things back. Such as when daddy growls at him, he’ll growl back (don’t ask me about the whole growling thing, lol, it’s just something they do). He also understands when you hold out your hand and ask him to give you 5, he will. He also knows how to turn his head back and forth to say no, and then up and down to say yes. So he really is more advanced in language than I tend to give him credit for.

He is getting stronger all the time, and is really getting around. Holding onto a toy he can walk all around the room on his knees, and if I put him on his knees in front of the couch he will pull himself up. The biggest issue here with Kyle, is that he is in the habit of throwing his head back because that’s what he did for so long to give him the momentum to move, and as a way to not use his muscles because he didn’t have the strength.

So I came up with the idea of creating a seat for him that would be high enough at the back, to prevent him from doing that. It would help him to relax his entire body while he is sitting, build his strength, and hopefully rid him of the tendency to throw his head back. The Pathways Centre where he has his therapy, has a man there that builds custom seats and other things. So he took my idea and made a brand new seat for him. It costs us $100 to have it made, but it is so worth it.

Old chair (you can see how he has his head tipped back):

New chair:  I don’t have a picture of him in it yet, but he cannot tip his head back like in the old one. It’s also adjustable so I can raise the part with the head rest on it up quite a bit higher, so it’s a seat that can be used for quite some time.

He sat in that chair for like 2 hours last night. He’s just so comfortable, it makes me happy knowing he is comfortable and building up his strength at the same time. His tummy has decreased in size by a lot. It is really noticable, so I think that is contributing to his growing strength and mobility too.

I also ordered his mini pacer (gait trainer). Apparently our government will pay for 75% of the costs, and we take care of the rest. It’s still going to be pricy…about $600 that we have to pay. But after putting him in the one at the Pathways Centre where he goes for therapy, and seeing him move all over the place in that thing, I just can’t not get one for him. So Kyle’s PT is sending in the paperwork, which will then go to vendor, who will send it to the government for approval and then we’ll get it. I ordered the blue colour like the one in this picture.

Because it’s adjustable, he can use it for about 2 years. But it changes with his needs. So if he doesn’t need to be in it with the little seat under him, that can be removed. It can eventually be used as just a front or back walker. So as he continues to grow and progress to full out walking, this changes with his needs. It also has a handle that attaches on for a parent to push with. It’s not included, and the government won’t cover that, but I ordered it anyway. I’d like to be able to take him out in the nice weather to walk in it while the kids ride their bikes.

As for eating…well, it’s pretty much the same. Kyle is a picky eater, which is normal in my house. Both my husband and 5 year old son are really picky and tend to eat the same few things. Kyle is the same…thanks daddy, lol!

He eats 2 gerber toddler meals a day. I dump the whole thing, including the vegetables, into a baby food blender and blend it until it’s just a little bit chunky. Then he’ll eat the whole thing, followed by a 7.5 oz jar of strawberries, and 8 oz bottle of soy milk (he can’t tolerate cow milk). I have to spoon feed him all his meals, because he can’t do it himself. Though he will hold a spoon, and a couple of times put a spoonful in his mouth. For breakfast he has an 8 oz bottle of milk, a jar of strawberries and his corn twists. Not exactly an ideal breakfast, but there’s nothing else he will, or can, eat that I can give him.

I’ve also bought so many different types of sippy cups in the hopes that I would find one he likes. He’s not having it. I even bought the one that is a cup with a bottle nipple, and then you can change the nipple two more times until it’s a sippy cup spout. He refuses to drink from a cup.

His snack food is Chester’s corn twists. Probably not the best thing to be giving him, but I’ve tried many healthier options and he just won’t eat it. He either chokes or he doesn’t like it. And I just can’t deny him something he loves to eat because it may not be very healthy. They’re easy for him to eat, he does chew them somewhat, but they also disolve pretty quickly. It also gives him the chance to feed himself.

Right now I am more concerned about getting the food into him, then in how and what he eats. He has a mouth full of teeth, but I find that he doesn’t really chew what’s in there, he just swallows. So I think he’s gotten into a mind-set where to eat, you swallow instead of chew then swallow.  But for now, I’m content to leave him be at this point. Once he turns 2, I’ll assess where he’s at and work at making some changes.

Overall, Kyle is doing amazing. He is a happy, sweet little boy and I am so blessed to have him.

Kyle playing this evening.

But just a bit of news before I post some pictures of Kyle…

We might have a cord blood match for Kyle. Which was really hard news to hear. On the one hand, it’s really an incredible thing. On the other, it means I can’t keep living in denial that Kyle’s just fine.

He’s not.

His disease will continue to progress, and the only chance we have to save him is with a transplant. Doing a cord blood is less risky than bone marrow, and the potential for success is the same. If they’re going to do one, they want to do it while he’s under the age of 2 and because he is doing so well right now. His disease hasn’t shown up in any way other then a slightly funny thing he does with his eyes, the fact that his growth has been stunted and his development is behind.

But now that he is on regular treatment, and essentially getting 2 treatments for every 1 since his dose is double, his growth and development have already improved. His appetite, his mobility, a lot of things have been improving.

So we have a tough decision ahead of us about whether or not to do the transplant. In the meantime, we’re waiting to hear from the transplant team to set up a meeting. Then we’ll make the trip to talk everything over with them, and then make our decision after that.

In the meantime, I’m going to continue enjoying each day with my sweet little boy. Like the fun we had tonight while I was feeding him. Every time I put in a spoonful of food, he would say “mmm”, and then I would copy him and he would laugh his little butt off. I got some good shots of him eating and laughing. You’ll notice the chunky food he’s now eating, and lots of it too – and then he still gets up at night to drink at least 4 bottles of formula. His face and legs are starting to get chunky, his arms are still pretty skinny, but we’re working on it

Here are 3 pictures: