Tuesday, November 6, 2012

finally

Oh how nice it is to sit down and write this.  Last week was insane, between 5 different appointments and little answers by Thursday I was down, way down.  I got a call from Children's in St. Paul and they said they could see EJ for a neurosurgery consult and an MRI on DECEMBER 18TH, I just about LOST IT.  I mean seriously.  Almost 2 months out without any answers, that was not gonna cut it, so I scrambled calling around to hospitals in the area, so grateful to live in a metropolitan area and have options.  I reached Gillette Children's Hospital...stating our situation and need to see someone immediately for a consult, they found me an appointment, for Monday the 5th, yes YESTERDAY.  No MRI but at least a consult.  We met with the neurosurgeon and she also agreed that an MRI is necessary to fully diagnosis what is going on, and suggested that this could be done efficiently using a "quick brain MRI" it doesn't require sedation and they could do it THAT DAY.  So, we went back at 3 and this amazing doc also squeezed us in to review the results in person right after the appointment.  I was so relieved and grateful.  The MRI was quick and easy, about 10 minutes total, a rather intimidating machine and quite scary holding his nukie in place with my arm stretched as far as I could reach to calm him while he screamed, the intensity and NOISE was insane!  But, he did great and we got the images we needed.  We anxiously awaited the results.  I was scared.  Mainly because not only were we determining if he had hydrocephalus we also were worried about any other brain abnormalities that may appear, since this can be common with "these kids" as our geneticist told us over and over and over it seemed the week prior.  (Not going back to "those people" again!)

I am scared to write this, as if the shoe is going to drop the minute I do, that's what all this bad news does to one's psyche after a period of time...but guess what?  It's awesome.  He has benign hydrocephalus, and what that basically means are the little follicles in your brain that absorb spinal fluid are immature in his causing it to collect but not cause any damage or pressure and as they mature they will begin to fully function with zero repercussions!!!!!!!!!!!  Can you even believe it???? FINALLY good news.  FINALLY we got to walk out of there with amazing news.  FINALLY.  I felt like I could breathe again.  It is such an immense pressure that you honestly don't even know you are harboring until it is lifted.  And there we looked at each other.  Quizzing her.  Asking her over and over and over, can this be true? Can it mean bad things later? How does she know FOR SURE?  She reassured us, educated us slowly on every ventricle, every part of his brain that is in tact and NORMAL.  NORMAL.  NORMAL.  WOW.  Normal, finally.  It's amazing to be grateful for something that we ALL take for granted every.single.day- isn't it?  But we are.  So grateful.  Right now, we get to breath again.  We had his spine looked over, his kidneys, heart, you name it, it's been evaluated.  That means no more surprises, right?  PLEASE tell me yes.  We should expect his gross motor to be delayed because of the size of his gourd compared to his tiny little body, it is more difficult for him to lift it, sit up, etc.  But, who cares?! HA! Perspective it's a beautiful thing.

I want to thank all of you for your love, prayers, listening ears, DELICIOUS meals, drinks poured, texts, emails, calls, hugs, from near and far.  I want to say they worked, but I know better.  I know there are too many of my friends elsewhere struggling to find their own answers and to say our prayers worked, well what does that mean about theirs?  It doesn't sit easy with me.  So I will say this.  Right now, we were fortunate, lucky, that no further complications at this point plague our boys brain or body and for that we are so thankful.  And it's not because we deserved it or earned it or worked harder, it's just luck.  I know too much now to say otherwise, but I will take some GOOD LUCK.  It doesn't mean we won't have other areas of difficult waters ahead, but we know that we can tread through them, charging forward and whatever the outcome, survive.  It means we look at any moment any of our children are all healthy and happy, and embrace every last second of it.  We had a stomach bug go through our house this last weekend and I just laugh because in years past, I would have dwelled on that, posted about it, bitched about it, and what silliness.  What a petty thing to care about it.  It refocuses your lens to see clearly all things important and worthy of fretting.  And I am thankful for those gifts as well.  Because right now our lens can go back to focusing on the mundane and silly and all the while relish in the very moment that we are given so perfectly today.

On this election day, we woke up and brought all 4 kids to vote.  To voice our opinions about how we think this country should function.  How lucky we all are to be Americans.  To live in this country and switch doctors if needed, get amazing care for our babies, provide a generous income to raise our family how we see fit.  We are all lucky today, regardless of your life circumstances I hope you too can see that.  I hope we can all remember that as election results pour in, we are united and proud.  Go vote.


11 comments:

  1. Grace I think about you and that precious little family of yours all the time. I am so happy for your news! Much Love to you all - Cathy

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  2. Such great news! Happy for all of you.

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  3. That's awesome!!! I braced myself when your new post came up and could feel my shoulders relax with every sentence I read. I am overjoyed by your news. Yay! I mean, SUPER YAY! Scratch the coffee date, I'm bringing champagne.

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    1. Holla to champagne!!!! Cheers indeed!

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  4. So good to read about the GREAT news!!! Glad E.J. Is gonna be okay!

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  5. This is amazing news Grace!! So happy for you guys!

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  6. Such great news, I am really, really happy for you...And way to push and get that appointment sooner than they first told you, you're an awesome Mom!

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  7. I'm a recent follower of your blog...I am so happy for your good news! Prayers can be amazing.

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