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.

Striving for Acceptance

It’s been a few weeks since I wrote an update on June.  To be honest, it’s because I’ve been having a tough time.  When I decided to write this blog I wanted it to be a way to update our family and friends about June, but I also wanted to use it as an outlet to process the pain that comes with caring for a baby with special needs.  I didn’t want to use the blog to vent my frustrations. I wanted everything I posted to be written with intention and meaning because after all I’m doing it to help heal.  

All that said, it took a lot of restraint to not use the blog as a place to release my emotions.  I can’t tell you how many times I sat down to write with tears in my eyes about my anger, sadness, and fear.  My plan was to post everything I was feeling so I could get my emotions out for the world to see because I couldn’t handle them inside me anymore.  I wanted them to be someone else’s problem. Thankfully, I’ve moved beyond that stage of grief for the time being. 

Nothing in particular happened to set off a spiral of negative emotions.  In fact, from a big picture perspective, it’s actually been a good few weeks – the diet is going well and June is still making progress developmentally. I think it was a combination of small situations that fed off the other that led me to feel down.  First, we have seen a lot of improvement in June’s development since starting the diet, but as time’s gone on, the progress has slowed.  It hasn’t stopped, but it isn’t as drastic as it was in the beginning.  While I think that is normal and to be expected, I felt discouraged.  I wanted it all to happen as quickly as it did initially. 

Next, June had another EEG which showed she is still having seizures.  I knew it was going to show that because I could still see her having them, but I was hoping for some improvement which the EEG did not show.  Now, it is still too early to make any assumptions, especially since June was not in optimal levels of Ketosis when she had the EEG, but I still felt disappointed and scared. 

On top of that, I was surprised at how difficult Halloween was for me.  When I saw all these kids running around in their costumes all I could think was, ‘Is that going to be June? Is she ever going to run up to our neighbor’s door and say “trick or treat?”  And the truth is, we don’t know.  That is a hard pill to swallow, especially for me.  Uncertainty terrifies me, but unfortunately that is my world…. that is all of our worlds, actually.  I just seem to be more aware of how uncertain life is than I did before all of this happened and sometimes I want to go back to being oblivious to how vulnerable we all are.

Last, as June gets older and the developmental milestones become more apparent in babies her age, it is difficult to see that she is not reaching them.  I’m struggling with accepting that June is following her own timeline.  In yoga we are taught to focus on our mat.  This just means to accept where we are in our practice without judgment or criticism.  So, just because the person next to me has loose hips and can do double pigeon while saying how good it feels doesn’t make her better than I am because I can’t even do half pigeon without wanting to cry.  I am trying so hard to take that lesson in yoga and apply it to my life with June and her development, but it is challenging.  I can’t help but get sad when I see babies June’s age or younger doing things that she can’t do yet.  It just doesn’t seem to be clicking for her yet and I am struggling with just being okay with where she is right now because the fact of the matter is I don’t have much control over that anyway.  I can provide June with optimal situations to thrive through things like occupational therapy, audiology, and speech therapy, but that is all I have control over and that can make a momma feel powerless.  So, all of this combined is why I’ve had a tough few weeks. 

But I want to end on a positive note with some good news to report. June had a behavioral hearing test this week, and it showed she is responding to noise 15-20 decibels softer than she did on her previous test.  At home, we’ve noticed June reacting more to sound since she started the diet, but it is encouraging to see that reflected on a test.  It’s amazing to watch her hear things for the first time.   Last week she was looking at herself in the mirror and she squealed, then she paused, looked at the baby in the mirror, and then started to cry because she scared herself.  It was the most precious thing I’ve ever seen.  I wish I had it on video!  Since then, she’s warmed up to the baby in the mirror and now smiles back at her when she squeals. 

Yesterday in an interview on “Katie” Michael J. Fox said,  “my happiness grows in direct proportion of my acceptance and inverse proportion of my expectations.”  That resonated with me for our situation with June.  We had so many expectations and none of them included what we are dealing with now.  In my wildest dreams I never thought I’d spend most of my days of June’s first year in doctors' offices and hospitals.  I thought I’d be in playgroups.  But the more I resist accepting our situation, I think the unhappier I will be.  Acceptance won’t happen overnight but maybe I can slowly release my grip on my expectations.