The Ride

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.