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 ago...it 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.

11 comments:

Zoey's mom, Heather said...

3 months? Is there not magic and beauty in that milestone, or what? And the pictures of her ... well, those speak volumes in and of themselves.

As a mom to a child with off the charts, ADHD and few other DX thrown in there as well, I can all too well relate. We have tried a plethora of drugs. A VERY long list. Finding the balance between controlling the behavior and not losing them to the fog, is a task but certainly doable. Given what you all have been through with seizure meds, this will be a whole new ballgame but one I know you will find your way through.

I look at the milestones Sophie is reaching and I look at where she falls on that really awesome little chart that Danielle posted, and I stand in awe of her progress and her accomplishments despite everything she has endured. Amazing.

A long and unfair road for sweet Sophie but one that remains inspiring to us all.Thank you as always for sharing the journey with us.

happy's mommy said...

I can't believe how TALL she looks! Tell her I said to STOP GROWING! And I mean it! ;)

And you know I'll be picking your brain when our turn comes for the ADHD meds. Some days I'm ready to try. Other days...I just hate the thought of another drug. I wish we could just get rid of them all!

xo

Love you guys!

...danielle

Lori said...

Sophie, you look AWESOME!!! love the spiky doo.

Elaine, Emma is on Straterra 25mg (she's 8 yrs and 45 lbs)She was diagnosed w/ADD it helps her at school to focus. We tried Vyvance and Concerta, both make her nutso. It took a few tries but are finally happy with the Straterra. She HATES swallowing a pill but she does it.

Nora was diagnosed last month w/ ADHD but we havent' tried meds yet. I am hoping we can find something that will allow her to sit for more than 30 seconds to attend to a task. I don't know how we will hide a pill for her to actually take it. She's pretty good at knowing when we are trying to pull one over on her.

I hope Sophie finds the right dose and that it helps her focus.

Hugs
Lori

Jackson's Blog said...

Amazing! So happy to read the fantastic update on Sophie! She looks beautiful...and so tall! :)

Anonymous said...

Soph, you look absolutely wonderful. Love you!

blogzilly said...

Another great milestone for her and all of you. Nice to hear such peace in your voice the other day and thanks again for all you do. Can't wait to 'out' ya...;)

Tammy Orahood said...

Hi Elaine, We too have moved on to ADHD drugs. Henry is on Adderall and I do think it helped. First, we tried regular, then Extended Release, and now we are switching to extended release in the morning and an extra dose in the afternoon at school since his impulsivity tends to happen in the afternoon. I have noticed a huge increase in his ability to do things on his own since the surgery, such as the computer, leapster etc. I'm just so happy to be able to try a stimulant drug since he's seziure free!

Mrs. M said...

She is beautiful! Miracle Girl!
Oh, the ADHD....it's so hard. So hard.
We started meds in July with our oldest son and it was so so difficult for me to go that route for a multitude of reasons. For W its the hyperactivity which is the root of all evil. And nothing was working enough so he started on Vyvanse in July and after the first two days of horrible frightening side effects, which disappeared, he has done fairly well. There are still some concerns...but sometimes I wonder if it's just me being hypersensitive.
Good luck with this ADHD journey. It's a tough one too.

Anonymous said...

how is sophie doing? Havent seen an update to this blog....just wanted to checkin and see if everything is ok :)

Anonymous said...

Please give us a brief update soon.

I know your hands over runneth and there are not enough hours in the day. But we would so enjoy an update. There are a lot of us that care.

CB

Anonymous said...

please send us an update on Sophie - we would love to hear how she is doing.

Thank you and blessings.