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Wednesday, January 16, 2013

Our Hero

So much time has gone by since my last post that I don't even know where to begin.  With the holidays life got hectic, and I put off writing about June.  I have a list of blog topics I planned to write about, but today I will just stick with an update on June. Overall, she is doing pretty well on the ketogenic diet and is tolerating it well. Although she continues to have seizures daily, they are not as frequent as before we started the diet.  A few weeks ago we switched from a breast milk, olive oil, and soy formula mixture to a strictly powdered formula. Since switching to the formula, we have seen a big improvement in June's development and a decrease in seizure activity.  We think the problem with the diet before was that we weren't entirely sure how many carbohydrates were in my breast milk - it can vary. So while we thought June was on a 4:1 ratio, we were not certain.

Some of June’s accomplishments over the last few months are listed below.
  •  June mimics us and is making different sounds.  This makes us optimistic because it shows she is taking in information, processing it, and then sending it back out.  Her neurologist was particularly pleased about this.
  • Her head control continues to improve.
    • She can lift her head and look side to side when she is on her tummy.
    •  She can stand in her bouncer for short periods of time. She needs assistance to make sure she does not whip her head from side to side, but she is improving.
    •  When I hold her she is starting to push off my chest and look around.
    •  When she sits supported on my lap or against the couch she is able to keep her head steady for longer periods of time.

  • She is more aware of her surroundings and is easily comforted when Matt or I hold her.
  •  She loves her bath whereas before she would cry the entire time.
  • She calms to music, especially Ella Fitzgerald & Louis Armstrong.  Her favorite song is "Isn't It a Lovely Day." She is also a fan of Jack Johnson, Nora Jones, and Otis Redding.  Random I know, but their voices calm her.
  • She is tracking objects more smoothly and consistently.
  • June sleeps for longer periods of time, and we are trying to wean her off her swaddle.

I would like to take a moment to point out how huge it is that June has made so much progress.  I don't always fully appreciate how difficult it must be for June to grow and develop given all the chaos in her brain.  I recently came across a blog post from another mother of a baby with Infantile Spasms where she showed a picture of a baby's EEG with Infantile Spasms and a picture of an EEG from a baby without Infantile Spasms.  I thought it was extremely powerful, so I am going to borrow from her post to show you the difference.

This is a picture of a normal EEG.  Notice how it is pretty and organized.

This is a picture of an EEG pattern consistent with Infantile Spasms.

Given how unorganized the activity is in June's brain, the fact that June can mimic us, lift her head, respond to music, and differentiate between Matt and me is truly amazing.  We are so proud of her.   I know I've said this before but I'll say it again. I am in awe of our June.  Since she came into this world 8 months ago, her personality has been fighting to come out.  And she has managed to do it.  I sometimes wonder that if I was fighting the same illness, could I be as strong as June?  She must get her determination and tenacity from her Daddy because I am quite certain I would want to give up.  All of our babies with IS and other forms of epilepsy deserve a round of applause because they are in all senses of the word heroes.

June in her bouncer.


  1. So amazing that she is making such progress! Also, I am so glad to hear that her seizures are less frequent than previously. It is so important to rejoice in every bit of progress she makes!

  2. Genny - glad to hear things are progressing for the better! I know you are getting lots of love and support - stay positive.
    Much Love! Sarah