Saturday, October 25, 2008

What will the future hold?

Alyssa's first genecist ~that we had by default~ Dr. Z offered no hope to us regarding Alyssa's condition. I think if a person lives life based on statistics then surely dissapointment will be overwhelming. However when hope and faith lead in life statistics are just numbers the real proof is in the living. I fully assert that doctors do not have chrystal balls and cannot see into the future. Predictions or educated guesses lead them and medical needs direct them but in the end it's the sovergnity of God that alone holds the outcomes. Many times the training and gut instincts doctors have are inline with what God has in store and then there are the times where God reigns so supreme he renders the opinion of a doctor mute.
I wonder could this be one of those times?

We were told Alyssa has full Trisomy 18, and not to expect her to survive more than a few days at best. Then we were sent home on hospice~ a choice made so that our child could die at home with our love~told not to expect her to live a month. At 2 months we really questioned her diagnosis were they sure it was full T 18, maybe it is mosacic. Alyssa's major organ systems are "healthy", she is fragile but appears healthy. Somethings has got to be off right?...

We decided because we felt as though we had too many unanswered questions about Alyssa's genetic make-up and we were not pleased with Dr. Z; we'd look for a new genecist. It's not because Dr. Z was the bearer of bad news that we decided to change but CHOP did make a significant error (without apology to date) in the report regarding our daughters' genectic make up. While the error didn't affect her diagnosis, it was something that is significant. The CHOP report in that area is wrong and this mistakes still needs correction. Now it's left up to us to back track and get the correction made. Anywho we want to work with someone who we deem to value our daughter's life even if she has a diagnosis that is incompatible with life...

Dr. S with Einstein/duPont (not CHOP) is our new doctor and it's official Alyssa has full Trisomy 18. We are glad to have this concrete answer. Dr. S the geneticist is personable and a good match for us. She will follow Alyssa, so we expect to develop a relationship with her. Upon Dr. S's initial evaluation she finds Alyssa to be healthy!

She used the word healthy~the word I was trying to stop using...Dr. S indicated that apnea and infections are the significant issues now. We've (Alyssa has) overcome the first big hurdle making it this far. She see's Alyssa being a long term survivor. My mind is trying to reconcile that I have a terminally ill child who is as "healthy" as my healthy children. Yes she is small and fragile but she is stable. She could survive till 1 years old, or 4 years old or God grant it 22 years old! There are several families with T18 kids of various ages. Yes I know the statistics and I also see that those "not compatible with life" have found a way to make!!

There are many hurdles to jump between now and 6 months let alone a year or more but hope..having hope is a wonderful thing. These kids are wonderfully made..whether or not speech utters from their lips, or steps abound from their feet..they are wonderfully made and a gift.

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