Thursday, June 11, 2009

A great substitution...

Instead of waking up in the middle of the night with a cluster of seizures...

Sophie now wakes up babbling nonstop.

It was 3am but it didn't matter. The sweet sound of her voice was mesmerizing. I only wish I had my video camera to catch the sounds but I didn't want to do anything to distract her.

She started off by saying "BarBarBarBarBarBar....neeeeeee". She always said "Bar" for Barney (her most beloved thing to watch on TV). And she always said "knee" when naming body parts. I have worked with her for months trying to get her to put the sounds together but she couldn't...until the other night.

Then she started to put all kinds of sounds together. Like "MaMaMaMaMaMa....meeeeeee" and "DaDaDaDaDaDa....meeeeeee". This went on for at least 30 minutes.

Right before she fell back asleep, she said "Bar....nee". Just a short pause between the 2 syllables. Hmmm...I wonder what she was dreaming about.

Day 13...Still NO SEIZURES!!!

Yesterday, Uncle Jason came over to watch Elsa so I could take Sophie to preschool. Later that afternoon, Grandma Debbie came over to play with the girls until late that night. Then that evening, Stephanie brought us dinner. This morning, Aunt Colette came over to watch Elsa so I could take Sophie to therapy and also to play with the girls. Later this afternoon, Jake came over to play with the girls and bring us dinner. THANK YOU all for being here for us.

13 comments:

LizGorman said...

I just love to read this blog! It is so great to find such inspiration. It is amazing the progress Sophie is making so soon after such an enormous operation. Keep sharing the good news!

Anonymous said...

Such good news!! What a joy every morning must be to you and Brandon. It's amazing to think about all the little things in our everyday lives we take for granted!!

Keep up the good work Sophie. We can't wait to see you in a couple of weeks.

Love,
Aunt Barb

baby trevor's mommy said...

Okay...that's it. Camera by the bed! I wanna hear her too!

XOXOXO

...danielle

blogzilly said...

That is great news. Has anyone outside your immediate circle, who maybe doesn't get exposed to Sophie as often, made any comment regarding her progress since the surgery, comparatively I mean? Is she at that stage yet where people are noticing major change or is it something that you as the parent are able to see because of your more regular exposure to her.

Anonymous said...

WOW!!! This just brings tears of JOY to my eyes!!! You are all such an inspiration! What an exciting time for you guys! OOHHHH we can't wait to see you!! Couple more weeks and Julia will get to meet her "Sho-she"!!!! Love ya,
Laura, Matt, Sara, Ryan & Julia
((((((((HUGS))))))))

Holli said...

What a sweet sound to wake you up!!

Leaps and Bounds!!!

Adesta said...

It's sounds like those that make it completely ok that you are awake at 3 am!!! I love waking up to my 2 month old cooing in her bed...it's so sweet sounding...

I'm so happy for you all! {hugs}

Reagan Leigh said...

So exciting!! I'm sure you'll be amazed with the new stuff she's doing each and every day! Very exciting!

As far as the neurotonin, apparently it's one of those medications that has the tendency to worsen myoclonic seizures (similar to vigabatrin which gave Reagan non-stop twitches). Reagan's spasms occur less in defined clusters and more in individual spasms which is similar to myoclonus...I guess that's why she's more susceptible to that side effect when she takes those drugs.

Sophie's Story by Elaine said...

Blogzilly...Everyone that sees her comments on how bright her eyes are. A friend of mine who hadn't seen her in awhile said that this was the first time that she made real eye contact with her. That Sophie actually looked her straight in the eyes for a few seconds as to check her out.

Melanie said...

AWESOME!

enough said....

I am so happy for you.

Anonymous said...

Dear Sophie,

You are a remarkable little girl!! Your Aunt Tammy has shared so much with me and this is my first to view your story by your Mommy. What great joy to hear of your progress and knowing you have all the love, strength and support from family and friends. Keep up the babbling and smiles...you are the Sunshine!

Love,
Eva

Marc said...

It's so nice to hear that all of you are doing so well - we are so happy for you!!!

Heather said...

Caught up on the last few entries and we are beyond thrilled for the progress and the amazing firsts this child is experiencing.Wow!Prayers continue for more everyday miracles for sweet Sophie.