"When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!
Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less"
We have been waiting for the results of genetic testing for our sweet Victoria .
Wolf-Hirschhorn syndrome is an extremely rare chromosomal disorder caused by a partial deletion (monosomy) of the short arm ("p") of chromosome 4. Major symptoms may include extremely wide-set eyes (ocular hypertelorism) with a broad or beaked nose, a small head (microcephaly), low-set malformed ears, mental and growth deficiency, heart (cardiac) defects, and seizures. Because the amount of genetic material deleted varies, the symptoms of this syndrome vary from case to case.
We received this diagnosis with utter faith and trust.....no tears or sadness. Such PEACE.
Seven days before we received the results of her genetic testing we almost lost our daughter. She was life flighted from our local hospital to the nearest children's hospital. She had very aggressive fast moving sepsis. Her body was shutting down.
We don't know why God saved her.
We don't know where our faith would be if He had chosen to take her. We like to think it would not waiver.....but truthfully we don't know.
We do know that HIS timing is perfect. Almost losing a child put life back into perspective. Wolf-Hirschhorn Syndrome?? BRING IT ON!.....our daughter is ALIVE!