We just got home from Gabriel’s follow appointment. We met with 4 different people in total.  It went very well. In general we have determined that he has had an 80% reduction in seizures since starting the ketogenic diet!

The doctor emphasized many times it takes at least 3 months to know anything. He was saying it in an encouraging way! Seems like it is very good that we are seeing results so quickly. For now G will stay on the diet and all the medications.

Gabriel was the exact same height and weight as when we left the hospital about a month ago. This means he gets an extra snack each day! Since they want him to grow, the nutritionist are going to adjust his calorie intake up about 5%. In our world that will mean an extra snack sometimes after nap time to keep ketones up through the night.

We also met with a neuro psychologist whose team will be working with us to monitor Gabriel’s development.  We are excited that he seems to be back to himself in language, cognition and motor skills. It is nice to know we have a lot of support.

Our last stop was to get his blood drawn. I am totally amazed at how well he handles getting his blood drawn. He doesn’t cry, fuss or scream at all. Today he just sat next to Chuck and watched the entire process. His  brow furrowed and his lip puckered a little..but he held still while she filled 3 viles.  (Amazing, in contrast, to the struggles we have getting medicine in him everytime!)

Thank you everyone for asking, checking on us, reading our blog, caring and praying! Today has been a gooooooood day!

On Sunday I gave Gabriel a couple of mothers day cards to sign. He wanted to keep the pen, so I gave him a blank piece of paper. Before leaving him alone I  reminded him “write on paper”. About a minute later I hear him say “I write my name (Pause)….on my leg”. I turn the corner and sure enough both legs are covered in black pen marks!  I can’t help but smile!  There he goes being all 3 again….pushing the boundaries just to see how much he can get away with. Needless to say the pen had to go to time out.

This was the 2nd incident this week that I found myself with wonderfully conflicting emotions! Soo frustrated because we have been over the “write on paper” bit about 70,000 times….at the same elated that the my sweet boy is wanting to write and telling me about it!

The first incident was on Wednesday morning as he was getting dressed to leave the house. I was holding the shorts he was stepping into, and he bent down and bit me! Twice on the arm!

I immediately sat him down and said “No! We do not hurt each other in this house. That hurt Mommy! Tell Mommy “I’m sorry, I won’t bite”

to which he replied…”No I not! I go to time out.”

He then took about 5 backwards while saying “I walkin backwards”.

Sits down for 3 1/2 seconds, stands up, walks to me, gives me a hug while saying “I sorry”

Seriously melt Mommy’s heart! He not only figured out his wrong but knew what to do to fix it.  The best thing is these were 2 things that had been BIG headaches for me several months ago before doose hit our lives. Makes me feel normal 🙂

Things with the diet seem to be going well.  He has not had any  “big seizures” in several days now. He does continue to have 1-3 little head drop or quick partial falls a day. My husband reminds me these are still seizures and our job as his parents are to advocate for NO seizures.

We go for his follow up appointment with the nutritionist and doctors tomorrow afternoon. I am slightly anxious…just because I don’t know what we will find out or if things are going as well as we hope.