Off the Ketogenic Diet...Next Stop....yummy food!

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. 

Thank you for the continued prayers for our sweet girl, even when there is not much in the way of updates.