Monday, March 12, 2012

A whole new ballgame...

Sophie has been through a LONG list of anti-seizure medications.  I can name off a dozen without even blinking an eye.  Somehow, I have gained comfort in the knowledge that I have built up over the years when it comes to anti-seizure medications.  But now that she is seizure-free, I am changing my focus to ADHD medications.

I meant to do a whole post on Friday, March 9th...her 3 month seizure-free anniversary.  I can't believe it...3 months already!!!  Absolutely amazing.  So this is what her hair looks 3 months post-op.  By the way, I love when people ask if she got a hold of some scissors so that I can drop the "No she had brain surgery" bombshell.  For me, it's all about raising awareness.  And I hope I put people at ease by talking so candidly about it.

She is 6 years old and in kindergarten, in other words, it is important for her to have the ability to focus on tasks that are demanding of her.  But learning about a whole new set of drugs is exhausting.  There are stimulants, non-stimulants, long lasting, short lasting, side effects and the list goes on.  And, really, I don't want to have to start trialing a whole list of drugs.  I have to trick her into taking these drugs and then she doesn't have the ability to tell me how they make her feel.  I hate that.  It makes me sad to see what the side effects of these drugs do to her.  I want a magic wand to wave and have "the" drug poof from thin air.  You know, "the" one that will help her focus without having horrible side effects.

Grandma Debbie bought this for Elsa for her birthday a few months was the only one that was big enough for Sophie to still fit it.  And she loves it, though she is a crazy driver.  For the cost of these power wheels, you would think they would come with a remote control.

Pure joy on Sophie's face.  Charlie, on the other hand, is not so sure about her driving skills ;)

So we started her on Strattera.  We started with 10mg in the morning but it was making her tired so we switched to the evening.  Within an hour of taking it, she is conked out.  No late nights for her but she was always great about going to bed anyway.  This past Friday night, we increased it to 18mg.  I can't say that I have seen any improvements yet.  It has made her more sensitive, as in, the tears come streaming if she gets her feelings hurt over any little thing.

Happy belated Valentine's Day.

But, for the most part, she is happy.  She is full of imagination these days.  She has always been great at pretend play but she has taken it to a whole other level.  The other day, I heard her in the other room playing with her hand puppets when I heard her talking in this deep voice.  That was the first time I heard her change the sound of her voice while playing with puppets.  Melted my heart.

She was going to a friend's birthday party where you were suppose to wear flip-flops.  She wasn't so sure about that.  They lasted all but a few seconds on her feet.  But she had a blast at the birthday party.  Her friends in kindergarten are so great about looking out for her.  They love her to pieces and truly care about her.  In some ways, I don't want her to get any older.  I wish I could freeze her at this age.

We are working on pre-reading skills.  She recognizes all her upper and lower case letters.  She also knows the sounds of most of the letters.  Fine motor skills are still very difficult for her.  But luckily (for her...I know how important it is for others), handwriting skills are not as important as they use to be.  We will continue to work on pre-handwriting skills (circle, squares, etc), but when the time is right we will introduce an adaptive keyboard.  Her expressive communication is still one of her strongest areas.  According to the chart below (thanks to Danielle for the posting this), I would say that she is solidly in the 4-5 year age range and would be in the 5-6 year age range if her speech was more fluent on a consistent basis.  Because you should hear the sentences and words that flow freely and naturally when she is playing with her Wizard of Oz hand puppets.

Thanks to Wee Talk Speech & Language Services, LLC for the above chart.

Friday, January 27, 2012

She is doing GREAT!!!

Oh goodness, I am horrible.  Sorry for the lack of updates.  Life has been...well...crazy but in a good sort of way.  I mean, I am a stay-at-home mom of three kids.  One that is recovering extremely well from brain surgery.  Another that is a keep-me-on-my-toes-sensory-seeking two year old.  And a just turned four year old that is a highly demanding momma's girl.  Between that and me having a hard time letting Sophie out of my sight, I have been physically and mentally exhausted.  It's hard for me to even think beyond what is right in front of me.  

But all of that has changed this week.  At the end of the day today, it will mark Sophie's first full week back at school.  Her energy level is there and so is my comfort level.  I know I have said this before but she is just AMAZING.  She really is.  I am just in awe of her.  She is one determined little (umm big...but it's hard for me to accept that she is getting so big) girl.

She remains seizure-free.  There isn't a day (or night) that goes by that I am not incredibly grateful for that.  A huge weight has been lifted from me.  It's hard to even think about my emotional state of mind prior to surgery.  Or, actually, prior to finding out that she was a surgical candidate (because the few weeks prior to surgery is a whole other story).  I will never be able to find the words to express the heartbreak of having to hold my child every single night while she had a cluster of seizures.  It was like clockwork.  Usually around midnight and then again around 4am.

My heart still pounds a little faster when I hear her moving around in the middle of the night.  Usually, she is just fishing for my hair.  Once she finds it, she will fall right back to sleep.  Yep...she sleeps with me.  But I feel my comfort level growing there too.  I think she is ready to sleep in her own bed again.  She was a great sleeper until she was 18 months old.  That was when the drop seizures started and she would wake up in the middle of the night with bloody lips (even with all the padding I put on her crib).  So she started sleeping right smack dab in the middle of Brandon and me.  And she stayed there until she was seizure-free after her first surgery (when she was 3.5 years old).  Then back to her own bed she went until her seizures relapsed eleven months post-op.

But this time is different.  It just has to be.  I am once again filled with so much hope.  Seizure-freedom seems so real.  So permanent.  Why not?  Right?  Miracles do happen.