Update :-) |

Update :-)

Posted by Melissa | Filed under Updates

It’s been a long time since I last posted. But I guess sometimes I just don’t have anything to say, so I usually just post when I do.

Kyle had his Occupational and Physiotherapy assessments a month ago. The results showed that he is at 12 months for occupational, which is his fine motor skills – things like comprehension, perceptual-motor integration, motor planning, and motor speed. For Physio he is at 7 months which is his gross motor skills – things like movement of limbs, sitting and standing, walking, balance, etc.

They feel that Kyle will catch up on his gross motor skills fairly quickly. They said because of the enlargement of his organs, his stomach muscles are so weak so he doesn’t have the core muscle strength to help him do things. He’s motivated, he knows what to do, but he doesn’t have the strength to do it. So that is what we’re working on for that.

They said he is at his age for fine motor skills, so that’s a good thing We have another visit with them today to see how things are going. At this time they don’t think Kyle will benefit from regular weekly therapy, because I can work with him at home. Once he has built up his core strength more, they can begin to work with him more often.

On another note…

The process to get Kyle’s bi-weekly treatments moved home is in process. But in order to do that, they want him to get a shunt put in. It sucks because he has such awesome veins in his hand and the nurses have never had any trouble getting his IV started. But a home nurse may not have the same kind of experience with small children that those ladies do, who work with them every day all day. So Kyle’s doctor put in a referral to get a shunt put in. Once that’s done, we can get his home care set up. They said they will ship like a month’s worth of Cerezyme from their pharmacy to the hospital pharmacy here, and I just have to pick it up and keep in the fridge at home.

This will be so wonderful for Kyle. He’ll be able to stay home with his own things while getting treatment. The shunt will allow both his hands to be free, so he can play in his exersaucer or on the floor. It also means, we don’t have to spend 2.5 hours on the road going to and from treatment and I’ve been telling his doctor that it needs to get done before the bad weather comes because I don’t want to be driving on the highway in snow and ice.

We’ll still have to make that drive every 3 months to get bloodwork since our local hospital doesn’t do the kind of testing required, but that’s so much better than every other week.

Kyle is growing and gaining weight, he’s eating really well and thriving. He is a very sweet and loving little boy, and cherished every day.