Archive for the ‘Thoughts From Mom’ Category

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 [...]

Read more | Comments (7) | Dec 11, 2009

There Are Too Many Unknowns…

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

Yes, they have a cord blood match for Kyle. But are we going to do the transplant? Well, in my quest to learn as much as possible before making a life and death decision regarding Kyle, I have to say that as of right now – my answer is no. Here’s why:
I contacted 4 of [...]

Read more | Comments (1) | Aug 9, 2009

Bone Marrow Transplant Hanging Over Our Heads

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

The whole bone marrow process is out of our hands. It’s up to the doctors to make things happen.
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 [...]

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Read more | Comments (3) | Jun 21, 2009

Treatment

Posted by Melissa | Filed under Thoughts From Mom, Treatment

I’m really amazed at how quickly and effectively the Cerezyme treatment is working. It’s not just his tummy that is getting smaller, but is disposition is better.
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 [...]

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Read more | Comments (9) | Jun 2, 2009

Changes after just 5 days?

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

It’s been a crazy week around here, so I haven’t had a chance to update in a few days…
I can’t believe that Tuesday Kyle goes in for his second round of treatment, already. The time flew by, and I’m glad for that. I truly believe that his first session has already caused changes in his [...]

Read more | Comments (3) | May 24, 2009

Will We Ever Get One Without The Other?

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

I swear that since Kyle’s medical issues began last October, there has never been a good thing without a bad.
As mentioned earlier today, Kyle received his first Cerezyme treatment yesterday and it was such a good thing. I am so happy that he is finally getting the medication his body so desperately needs to begin [...]

Read more | Comments (7) | May 14, 2009