end of the week and such…

February 14th, 2014
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I wanted to give you a little update on Noah. The outpouring of notes, texts, little gifts and all around love and support for our family during this time has been beyond.

We got the results of the EEG and MRI he had a few weeks ago – you know, before he broke his arm. And the great news is that the MRI was completely normal. The not-so-great news was that the EEG showed “elevated brain activity”. The neurologist (who we now officially adore) recommended that we start Noah on medication, but after some more conversation thought it would be even better if we would agree to do an at-home, 48-hour EEG. This would give him  a longer and more detailed picture of Noah’s brain activity, and maybe even pinpoint those times of “elevated” activity too.

Of course we agreed and spent an “interesting” weekend with our wired-up boy (and yet more “Madagascar”….).

noah

We were told that it would take a week or so to get the test results back and so we put it toward the backs of our minds for the time being.

And then two days later the doc called, asking me to come in right away. Apparently that elevated brain activity that he observed during the first EEG was present for pretty much the entire 48 hours.

Stop.

I called Mike (who was away on business) and we both had the same exact reaction:

Of course.

noah

See – we’ve been having issues with Noah of late – issues that are erratic, inconsistent and unpredictable. He is, for the most part, this amazing, funny, congenial little boy. He loves school and brings nothing but joy to our lives. But then there are moments – mostly at school, mostly with peers – that reveal a Noah that struggles inexplicably. And no one – not us, not his teachers, not his doctors – has been able to to identify what it is or why it happens.

This test result – as alarming as it sounded – was the first piece of news that finally connected some of the dots that we’ve heretofore been unable to do. And it was also a relief. Because now we could finally – finally – put our little guy on a path to solving some of these issues.

The doctor was amazing – so comforting and so optimistic. He described the EEG as an “electrical storm” in Noah’s brain, which would explain why he – as bright and capable as we know he is – has not made progress in certain areas that we’ve felt certain he should.

We are starting him on medication and are so hopeful that this will be the answer we’ve been looking for.

Of course, Noah has no idea that he’s been experiencing this, and through it all – the broken arm, X-rays, IV’s and many hours in waiting rooms – has been the sweet, delightful boy we love so much.

Though by no means a perfect parent, the one thing I’ve always prided myself on was “knowing” my kids – really knowing them. And this has been such a stressful situation mainly due to the “not knowing”. Why couldn’t I crack this code? And so – ironically – the seizure that set this all in motion was truly a blessing.

noah

Over the moon for this little guy.

Have a wonderful Valentine’s Day!

(Almost forgot this week’s Babble links!)

Got Leftover Chili? Here’s What to Do!
D.I.Y.: Homemade Mounds and Almond Joy Bars
18 Chocolate and Coconut Recipes
Winter Fruit Salad
Almond Recipes – Sweet and Savory

18 Responses to “end of the week and such…”

  • it’s crazy how some of these great challenges in our life often become such great blessings. you just gotta stick it all out and be patient – easier said then done, right? anyway, SO happy you have this news and start to move forward. been thinking about you guys a lot. lots of love!

    • sherisilver says:

      Thank you Jane – it’s so weird – you get so “in the moment” that you don’t really stop to think about the enormity of it all. Which of course, is best because THAT would probably stop you in your tracks if you did. xo

  • Hi Sheri! Just read your blog about Noah. So sorry that you and Noah have to go through this but what a blessing that now you have some answers!! Wonderful to have great doctors and Noah is blessed with having a sharp mom who knows her child! Good luck and keep us posted!!!

    Janet

  • Sheri, you touch and enrich my life with your every post. Thank you for letting me be a part of your life albeit vicariously. Virtual hugs to you.

  • Your Mom and Dad have been keeping us up to date with Noah. Sorry the little man has these problems, but glad you finally have some answers. Just remember he has this whole Florida fan club pulling for him. Also for his Mom and Dad who will need a vacation when it gets under control. Bye for now and hope we get to see you down here soon.

  • Sheri,
    I was overwhelmed with emotion for you when I read this. The clarity, the relief, the gratitude for that doctor. This is all good and is well on it’s way to being better and better.
    Love to you and yours,
    Shalagh

  • Oh Sheri! I’m so sorry for all your family has been going through! It had to be so frightening! I get emotional just reading this post. I’m relieved and grateful that you are finding some answers and will be thinking of you and sending you so much love!!! Stay brave!
    xoxo,
    Jen

  • Jessica Baron says:

    Sheri, Laura Londin’s mom here. I am moved by your wonderful parenting and perceptive inquiry and action. Wishing you all strength. Noah is fortunate to have you as parents.

    • sherisilver says:

      Thank you so so much for your kind words. Having wonderful friends like the Londins has made going through this much easier.

  • Carol Papalas says:

    Wow, Sheri!

    I’m happy that you have such a wonderful doctor, one who has been able to discover the source of Noah’s issues. I am really hopeful that the meds will help. Keep us abreast of all that happens. Your Noah is an extraordinarily lucky boy to have such caring parents.

    Carol

  • I’m glad your baby boy is well and that the doctor had a great bedside manner so many docs out there that don’t care, it’s routine to them as far as they’re concerned “no big deal” grrrr!!! I may not be a parent but maternal instinct kicks in no matter what – I know this because I take care of an elderly parent (like a child) so thank goodness you were lucky to get doc that genuinely cares about parent/patient fears and feelings. By the way I’ve never met you, only read your posts and comment half of the time but from what I’ve learned through your posts there is no doubt in my mind your an outstanding Mom and so is your wonderful baby boy
    Marti

    • sherisilver says:

      You are so, so nice. Truly. And yes, we are unbelievably lucky to have met this doctor who is as caring and warm as he is an expert at what he does. We’ve certainly met our share of the “other” type. Not fun. xo

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