Are you ready for another miracle?

Another...as if there haven't been enough?!

I am completely and totally blown away.  Overwhelmed in the most wonderful way.

This morning I received a phone call from a woman named Nancy.
Nancy is the Center Director for Texas Scottish Rite Hospital for Chidren in Dallas Tx, and the National HPE Project Director.  This wonderful woman is the person who has supplied us with all sorts of research and information and the opportunities to connect with Holoprosencephaly researchers for evaluation of Sam's condition.  Not only has she been extremely helpful, she has been completely accessible, to the point that one of the times I emailed her and got the automated reply of "I will be out of the office until Friday", I *still* got a follow up personal email from her answering my questions within hours of sending the original email to her.  Totally unheard of.

Back to the phone call.
The phone rang, caller ID read "TX Scottish Rite", and suddenly I couldn't breathe.  I was almost too scared to answer the phone.  We had been told it would be 6-10 weeks to hear back on MRI evaulation by the research group, so we were hoping to hear back by the end of the  year.  I saw the caller ID and my first thought was "oh no-usually people hear back via email....is something really wrong?  Did they lose the scans?  Why would they call?"  I took a deep breath and answered.  It was Nancy.  She apologized for taking so long to get back with us about Sam's MRI.  All I could think was that this is weeks earlier than I anticipated, and honestly, I hadn't even thought about it for the last couple of weeks!  (could I really be learning patience after all?!)

Then those words came;  "The researchers have had a chance to review Samuel's MRI scans that you sent us."

Yes!  The moment we've been waiting for!  Was the prenatal diagnosis of semi-lobar correct?  The most recent guess of the less severe lobar HPE?  What is it?!

"After reviewing everything, well, Samuel doesn't have Holoprosencephaly."

What?

I squeaked out a "really?"
"Yes.  There are of course the enlarged ventricles, and the other things that it looks like you've been made aware of, the fused fornices and such, but there is no fusing there between the lobes that qualifies as Holoprosencephaly.  You will still be looking at challenges and delays from the other things, but all those things you worry about with HPE kids, you don't need to worry about those anymore.  This is your holiday gift this year!"

My holiday gift?  Wow, talk about an understatement!

Samuel does not have Holoprosencephaly.  Wow, it is surreal to say that!  Since 6 weeks before he was born, that has been his label.  He is 18wks old tomorrow.  That means that for 24weeks, that little label has been wrong.  The radiologists, neonatologists, neurologists.....all felt like they saw HPE.  And yet today we have been told that the leading researchers on this malformation, the ones that have perfected reading the scans of children with this condition are saying it isn't there.    If that's not a miracle, I don't know what is.

My little baby boy that was given a less than stellar chance at 18 weeks gestation, whose odds improved as his hydrocephalus stayed stable and he was given the diagnosis of HPE, but who was still given just a 60% chance of making it through his first month of life, is now 4 months old and thriving.  Thriving.

I am absolutely floored.

I haven't taken the time to blog the neurology appointment we had two weeks ago-hopefully I'll get to that soon.  There are other issues going on in his brain still. but to have this host of likely problems removed is amazing!  The shorter life span, lack of speech, severe physical impairments....wiped off the list for now.  Who knows how the Hydrocephalus will effect his brain, or what the added diagnosis of Rhombencephalosynapsis will mean.....  Today it's ok to not know.  Today it is more than enough that this adorable little creature snuggling in my arms has had one more challenge removed from his life.