I
have been updating Facebook quite often and have not been blogging. I know many of the readers are the same so I
won’t go into great detail about the past few weeks.
Poor
Peyton has been thru quite the battle with the seizures. At the end of March, she starting having lots
and lots of seizures again. Her ketones
were good and we didn’t know what was going on.
With the help of her neurologist, we increased her Onfi dosage and
started her on a new drug called Banzel.
Things have definitely calmed down with the seizures but we are still
seeing more than we like. Of course, if
we had our way, she wouldn’t have ANY, but that doesn’t seem to be her journey
right yet. Her overall mood was pretty
ugly during the bad seizure days but who can blame her. She would be so tired from all the seizures
wracking her poor little body and would finally doze off only to be jerked awake
again by another stupid seizure. There
is nothing more helpless than watching your child seize. There is NOTHING you can do, NOTHING you can
say. You just have to watch it and then
when it’s over, all you can do is love on her and tell her it’s all ok. They stun her, they confuse her and they make
her angry. I hate them. They are mean.
On
a brighter note, Peyton continues to show us her little personality. She is quite the princess and is very vocal
with her likes and dislikes. For
example, she really likes her cartoons and please don’t get in her face when
she is watching them. She really likes
her Kush toy that she can mash on and it vibrates and makes music and please
don’t try to distract her with another toy when she is playing with her Kush
toy (unless it’s a really cool toy, of course).
She doesn’t like being dirty and really likes how she feels right after
a bath. She likes being carried around
the house so she can see what the rest of us are doing and recently we
discovered she enjoys riding thru Wal-Mart while we push her in her kid
cart. She doesn’t like loud noisy crowds
and the buzzer at basketball games tick her off but she is pretty tolerant
since she seems to know she is there to see her big brother play ball. She
likes (no LOVES) her Daddy. He is hands
down her favorite person on the planet and when she is upset and no one else
can calm her down, he can. I pretend
like it miffs me that she favors him, but it doesn’t really. It’s just further testament to the great dad
that he is and how lucky we are to have him. I always like making these like/dislike lists
of hers because it reminds me how far she has come and how thankful we are that
she has likes and dislikes and that we are getting the chance to see her little
personality.
Oh,
another dislike – don’t be messing with her hair unless your name is Mimi and
you have a full understanding of how to style that wild curly hair of hers!!
We
love her always and will treat her like the princess that she is forever.
