Life
with Seizures is a Roller Coaster – you learn very quickly that good days
without seizures do not equal the end of the seizure nightmare. Any parent of a child/baby/loved one with
seizures can attest to the fact that the unpredictability of seizures sets you
on edge all the time and any twitch, startle or strange movement makes you
positively sick to your stomach. The
moment you become too relaxed and get accustomed to not seeing seizures, they seem
to come roaring back.
After
the 17 day run of no seizures (which we are still so thankful for) Peyton
started having a few seizures here and there and suddenly on Saturday, her
seizure count for the day was 18. On
Sunday, she had 12 and 7 already today.
Her ketones have been small to moderate instead of large so this may be
a contributing factor. We are working to
get those large ketones back because that is when we typically see the best
seizure control.
We
are also concerned that because of her recent growth spurt, her phenobarbital
levels may be low. I have an email in to
her neurologist to see if we can get her levels checked asap.
Hopefully,
we can get some control back and see less and less of these awful seizures
until we don’t ever see another one.
This
is the bummer news so now I will share the not so bummer news.
She
is smiling DAILY!!! Over the past 20
months, we have seriously wondered at times if we would EVER see her smile consistently
and now we are getting daily smiles.
Those smiles are like balm to the seizure wounds.
She
sits in her kid cart and plays with toys on her little tray. I used to sit and wonder if she would EVER
play with toys.
She
is trying to roll over and this is going to happen, I KNOW it.
She
is my hero…..every day.
Still
taking this roller coaster ride one day at a time.
On
a side note, Ed and I got to participate in a trip to Raleigh, NC to visit with
two of our local representatives and two of our Senators to advocate for Early
Intervention/Early Childhood Education.
It was an interesting visit and we hope we made a difference.
