Last weekend we celebrated yet another milestone, something that I wasn't sure we'd get to do - Kaleb turned 3! We had a small party, family only and just enjoyed being in the same house at the same time. We missed Andrew, Kaleb's oldest brother (step), but we were definately all thinking about him!
In April of 2010, we traveled to Duke University in hopes of having a cord blood transplant in order to at least extend Kaleb's life with us, of course, it was a procedure they denied us at the time, it was a blow, but living through this horrible disease we know that was for the best - I'm glad we didn't prolong his suffering. But, while we were there the doctors that we met with basically told us to go home and enjoy our time with him, that we had a year, maybe two. While there is no way for them to tell us how long he will live, it's anyone's guess, but as we round the year and a half point of that, you can't help but think about it even more.
While putting together a brochure that we used for our fundraiser in April, we have 6 Sandhoff's Angels in it and of those six, I couldn't help but notice that half of them died within two weeks of their birthday (either before or after) which is something that definately sticks in your mind.
We try not to focus on that dark cloud that is looming over our heads, but it's sometimes hard to do. A friend posted this in her status on Facebook today and I like it so much I want to share it again...."“People cry, not because they are weak. It’s because they have been strong for too long.”
In April of 2010, we traveled to Duke University in hopes of having a cord blood transplant in order to at least extend Kaleb's life with us, of course, it was a procedure they denied us at the time, it was a blow, but living through this horrible disease we know that was for the best - I'm glad we didn't prolong his suffering. But, while we were there the doctors that we met with basically told us to go home and enjoy our time with him, that we had a year, maybe two. While there is no way for them to tell us how long he will live, it's anyone's guess, but as we round the year and a half point of that, you can't help but think about it even more.
While putting together a brochure that we used for our fundraiser in April, we have 6 Sandhoff's Angels in it and of those six, I couldn't help but notice that half of them died within two weeks of their birthday (either before or after) which is something that definately sticks in your mind.
We try not to focus on that dark cloud that is looming over our heads, but it's sometimes hard to do. A friend posted this in her status on Facebook today and I like it so much I want to share it again...."“People cry, not because they are weak. It’s because they have been strong for too long.”
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