I see that it’s high time for a Peyton
update! Where does the time go?
A lot has happened since October!! She turned 3 and we celebrated as much as she
would tolerate.
She is smiling more and more and
more. This brings us indescribable
joy.
She is now completely weaned off the
Ketogenic diet. She was having horrible
issues with constipation – we tried everything and the problem persisted and
she was miserable ALL the time. With the
blessing of her neurologist, we began the wean and it has taken about 3 ½ months
but she is now fully weaned. Her
seizures have acted up a little, but her quality of life was being affected by
the misery she was in all the time so it really has been the best
decision. She stayed on the diet for 3
years and we are eternally grateful for what it did for her while she was on
it, but we are sooooo happy to be off of it and introducing new foods to
her. She is enjoying it too and smacks
her lips when she sees the food coming.
She is a happy girl and we get those smiles pretty often now.
We had a check-up yesterday in Chapel
Hill with her neurologist and Ed and I both left feeling like it was the best
appointment we had ever had. We have always
really liked and respected her neurologist, but yesterday it was clear he had
been thinking about Peyton and her situation and thinking of different avenues
we could take. He stayed in the exam
room for over an hour with us just going over all the different options now
that she is off the diet. We decided on
a round of steroids to start with.
Steroids are generally used to treat Infantile Spasms, which Peyton had
in the beginning. The Steroids were very
effective in treating the Spasms. Sometimes
steroid treatment can also be helpful in treating Tonic Seizures – which is the
seizure type Peyton has. We will do this
for 2 – 4 weeks depending on how she responds.
After the steroid treatment, we are going to try a different
medication. We will see how all this
goes and then go back in 4 months to have a routine 24 hour EEG and to see the
neurologist again.
Developmentally, she is still progressing. Slowly, but she is still further along today
than she was six months ago or even a month ago. She continues to play favorites with us. Blake is her most recent favorite. He has been spending time “playing” with her
and she just eats it up. We realized that
we all spend a lot of time caring for and loving on her of course, and we sometimes
forget to just play with her. Blake’s
specialty is having fun so they have become the best of friends and she is
happy when Blake is nearby. Not to say
she doesn’t love Mackenzie as much because she does, but Mackenzie is more of a
mommy figure and caregiver too. Nobody
better to snuggle with then Mackenzie, but play time is all about Blake.
