Tuesday, December 7, 2010

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."


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.



Brad Ball said...

Amazing... this is wonderful news. We are so happy for you guys!

iloveowen said...
This comment has been removed by the author.
PrayforNathan.org said...

Cate you have no idea just HOW amazing that is. HPE is about the toughest challenges there is. When you remove the HPE, you have a brain that can function, learn, improve. This really is a miracle and absolutely wonderful for all of you. Removing the HPE also removes many medical issues (that Sam's not having anyways)!

Since he still has the hydrocephalus and other challenges, I would recommend you get him started with other therapies as soon as you can!

There was a study done where kids who received therapy as early as 2 months made substantial developmental gains as opposed to kids who started at 6 months, a year, etc.

Some of the best therapies out there are feldenkrais and HBOT, if you can do these for Sam, please try it!

And if you saved his cord blood, Duke has a protocol to reinfuse him with the cord blood.

The more you do, the earlier, the more thorough his recovery and the less developmental delays due to any of his brain challenges.

Best of luck!

XLMIC said...

Absolutely overjoyed by this news! I can only imagine how you all must be feeling. He's THE Miracle Baby! Okay, going to go dry my eyes now. :)

Laurie said...

Oh, that's so awesome! I am so happy for you and your family, what wonderful news. :)

~LL~ said...



I cried when I saw your facebook post

I cried when I read this

I like crying over these things

I love you all!

Lisa said...

SUCH wonderful news! Sam is a miracle, a beautiful wonderful, smoochable miracle!

From all the little Hunt's in Huntville said...


Kelsey said...

Miracle! So happy for you and Sam :)

Rheanna said...

His whole life has been one amazing miracle! Thanks for sharing his story with us. I think I need a daily reminder of how precious life is!

Tricia said...

amazing news

The Balls said...

Christmas Miracle!! I can't tell you how amazing that is to hear, I can only imagine how you and Aaron feel! Hooray!!!

Colette said...

Oh wow .. what fantastic news and actually brought tears to my eyes! Wonderful Sam, your miracle, its just amazing! My parents were told when I was born (many moons ago..ugh!! I dont like remembering how old I am now once I passed the big 40 a couple of years back! ;) ) that I would have many problems too being born with Spina Bifida, not to expect too much developmental wise, I would need to go to a "special" school, would probably never sit up, talk, the list went on! But my parents stayed postive, sat me back up when I'd slide down, read book upon book, and ok, I was never able to walk, but when starting "ordinary" school at 4 yrs old I was reading and writing and ahead of most of my school mates who had no disabilities and ahd turned into a right wee chatterbox!! So yes I had other challenges physically, thanks to my parents, I have grown up to be an independent woman, work, drive and lead a very "normal" and happy life, so I am so thrilled about your news. Stay strong and positive and those miracles will keep on coming! Love to Sam and you all! :) xxx