September 9. 2015
"If one of the side effects of keppra weren't irritability, would she be a baby with a constant toothless grin?! If it weren't for topamax would she be a bit quicker cognitively?! How much of the Sonzee bear that we know and love is actually Sonya?! How much of her are we missing out on?!"
While I think it is "safe" to say that we won't ever be
able to differentiate whether all of her personality is due to a specific drug
she is currently taking, a long lasting side effect from one she is no longer
taking, or if she is acting just as a non-medicated Sonzee bear would, I have
so much to say to the me from one year ago.
Sonzee is practically on a non-therapeutic dose of Keppra as we continue
to wean her slowly. At her highest dose over the past 17 months, she was
on three times the amount she is currently taking. She is on Sabril and
RSHO hemp oil and is experiencing the best seizure control of her life (poo poo
poo, chamsa chamsa, knock on wood, and every other possible superstitious
saying from every culture) at 23 days 13 hours and 15 minutes (as of the
writing of this post). She is the happiest little girl, with the most
beautiful and amazing open-mouthed tooth filled smile. She attempts to
giggle and makes a Sonzee exclusive little laugh. She plays with her feet
and interacts with everyone. She loves to be silly and her personality is
shining. She has been off Topamax for 6 months and immediately we saw her
cognitive abilities enhance with the elimination of that drug. HOWEVER,
100% of the Sonzee bear that we have known and loved IS ACTUALLY THE SONZEE
BEAR.
All of the medical
choices we make on this journey we obviously make for her, so she can be the
best little bear that her little body allows her to be. Every smile,
every laugh, every milestone she achieves is due to her being her no matter what medication she is on,
no matter what obstacle that drug puts in her way and no matter how amazing it
helps to make her. Every tear, every setback, and every hurdle she has to
overcome and reattempt are all because of who she is. I want my old self
to know that we were not missing out on anything that she had not shown us
because at that specific time, that was not who our little bear was.
There will come a
time when I know this post will serve me well. I hope that when I reread
the words I am writing I am taken back to this specific moment in time.
The time when our days were filled with less tears of sadness and more
tears of joy. The time when we started to meet our little bear like we
would any typical 19-month-old child of ours. The time when we celebrated
every little tiny moment of positive outcome as if it was going to be the last,
but hung to the hope that it would not be. The time when we worried that
our days such as this could very well be numbered, but we would rather
experience them this way regardless.
It has been 363
days (give or take) since I wondered who my fourth child was. I wondered
who she could be without the assistance of an anti-epileptic drug, yet would
never allow myself to give the okay of letting her not take one. Today, I
am celebrating who our little Sonzee bear is DUE to the seizure control she has
been blessed with while also on a drug that I once worried would take so much
of her away. To that, all I have to say is what a difference a year can make.
Mommy bloggers, Join me @ Top Mommy Blogs

No comments:
Post a Comment