It was one year ago today that we learned McKenzie had severe
heart defects. It seems much longer. Our lives have changed so
much. So, so much. I grieved at that time for the loss of my
perfect baby. The only thing Dale and I ever wished for our
children when we were pregnant was to be healthy. It was devasting
to learn that wouldn't be for our precious baby girl. It was
through the love and support of family that we made it. The time,
emotion, and love provided by our family (especially my mom, dad,
and sister) has been the rock that kept us going. I now know we
never lost our perfect baby. She wouldn't be McKenzie if she had
all of chromosome 22q. I couldn't ask for a better daughter or a
happier baby. She is perfect as she is even with scars on and in
her chest.
On a related note, McKenzie had an appointment with the geneticist today regarding her 22q11.2 deletion. Lucky for us, she need not see him again or any other geneticist until she decides to have children. Apparently, his main job with a child with 22q deletion is to make sure they are seeing all of the appropriate specialists and to answer questions. McKenzie is seeing everyone she should, except an eye specialist. So, we are setting up that appointment soon.
They provided information on more resources for us to tap to deal with the 22q and its related issues. He once again warned us of the possibility of many future problems associated with this chromosomal abnormality. We already knew it, but it just reinforces what to look for: soft pallet problems, emotional and pyschiatric problems, and other developmental problems. Hopefully, even if these problems arise, we've faced the worst of it in the year that has past. If not, we know we will work through it as we have been.
Thank you all for helping us through this year.
Mel
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| Here is a pic of Izzy trying to feed herself. She is constantly trying these days. November 6, 2008. |
On a related note, McKenzie had an appointment with the geneticist today regarding her 22q11.2 deletion. Lucky for us, she need not see him again or any other geneticist until she decides to have children. Apparently, his main job with a child with 22q deletion is to make sure they are seeing all of the appropriate specialists and to answer questions. McKenzie is seeing everyone she should, except an eye specialist. So, we are setting up that appointment soon.
They provided information on more resources for us to tap to deal with the 22q and its related issues. He once again warned us of the possibility of many future problems associated with this chromosomal abnormality. We already knew it, but it just reinforces what to look for: soft pallet problems, emotional and pyschiatric problems, and other developmental problems. Hopefully, even if these problems arise, we've faced the worst of it in the year that has past. If not, we know we will work through it as we have been.
Thank you all for helping us through this year.
Mel
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