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Archive for the ‘Updates’ Category

A Much Needed Update

Posted by Melissa | Filed under Home Life, Pictures, Updates

I’ve haven’t been posting much. I guess it’s because we’ve reached a point where we know what we’re dealing with, and I suppose, now we’re just dealing. But I know that my posts here are a way to keep friends and family who care about Kyle updated on how he’s doing, so I’m going to try to [...]

I Feel So Hopeful & Blessed

Posted by Melissa | Filed under Gaucher Disease, Thoughts From Mom, Updates

When I hear of the heart-breaking things that other parents of children with Gaucher disease are dealing with, I have to count my blessings.
Kyle has never had, and still doesn’t have any major issues. He is improving in both his gross and fine motor skills. Things he couldn’t do in one therapy session, he is [...]

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 – [...]

It’s official!

Posted by Melissa | Filed under Home Life, Updates

After speaking with 5 doctors who are leading experts on GD type 2 and 3, we’ve decided not to go ahead with the transplant.
It sucks that now there’s isn’t any hope of a miracle cure like we were led to believe a transplant could be. But apparently they’ve never seen anyone with the 2 mutations that Kyle [...]

Finally Getting Treatment

Posted by Melissa | Filed under Appointments, Updates

I finally got a call from the genetics/metabolics doctor this afternoon. She said the enzyme replacement therapy medication has been released for Kyle. They’ll be in touch with me to set up a date for his first treatment, and she’s looking at it being next week. Woo hoo! We’re finally getting somewhere!
When asked if I [...]

No Word Yet…

Posted by Melissa | Filed under Updates

Today has officially been 2 weeks since myself, my husband, and our 4-year old son had blood work done to find out if any of us are a bone marrow match for Kyle.
But the day went by without a phone call, and now I’m worried that none of us are a match so they didn’t [...]

Our Fight For Kyle

Posted by Melissa | Filed under Updates

This is the beginning of a new blog. A blog about Kyle and our life as we fight this killer disease – Gaucher Type 3.
Read Kyle’s Story
Find out what Gaucher Disease is.
Please check back soon. I will updating this blog on a regular basis.