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Monday, December 20, 2010

Whip Cream and Gravy, Baby

I like gravy. I also kind of like the whip cream on top of my yummy coffee drinks. But usually I forgo the whip cream on my Starbucks Frappuccinos. Maybe I should rethink this.

It's been two weeks (yes, two weeks already) since the start of the Keto diet.

And what an emotional roller coaster it has been.

Mostly because I was warned of the sleepiness and of the possibility of Christian being lethargic, which honestly isn't much of a leap from how he is usually, so I was prepared.

What I wasn't prepared for was an increase in seizures. When you have a lot of eggs in one basket, as one friend put it, it's such an emotional blow to see the opposite happen of what you so hoped and planned for.

As I mentioned in the last blog, I've found out that increased seizures actually wasn't that uncommon. And I finally emailed the dietitian. She reiterated that it's ONLY BEEN TWO WEEKS and it's not enough time to even make adjustments to the diet. She also mentioned that she had a patient that took six months to get optimal seizure control. This is also something I've read can happen, too.

Long story short...BE PATIENT, SHAUNA!!!

I mean, in my defense, it is so hard to see more seizures, which is exactly the opposite of what we planned for. Over the last two weeks there have been a few talks with God, second guessing, researching, more second guessing, and praying and praying and praying. I finally reached my breaking point when I heard a little voice in my head. I think it's God, but maybe it's one of my multiple personalities. If so, this personality is the smart one.

I was very upset and emotional when I heard this voice say - Accept what is and be thankful for anything given on top of that.

What does this mean? It means accept what I prayed for in the beginning and that was to have Christian with us, no matter what his limitations. This is what I begged for. So accept the present and be thankful for the gravy, the whip cream, and cherry on top.

We have what is good in front of us. Everyone likes mashed potatoes, right? Well, the gravy on top is what makes it extra delicious.

Everyone likes Starbucks, for the most part (and if you don't, I'm very sorry for you). And it's the whip cream on top that makes it that much more decadent.

This is my analogy of the week...Christian is my mashed potatoes. Whatever is given to us in the form of abilities is just gravy, baby.

Why am I comparing my son to mashed potatoes and Starbucks drinks, other than the fact that he is so warm and mushy and sweet I could just eat him up? Because as soon as that little voice put things into perspective for me, my week or so long downer mood flipped a 180. It was as if someone turned on a light switch and it was all better. I could see clearly again.

And I'm sure you're thinking, "Okay, Shauna, that's nice and cute with your food analogies but how's Christian?"

Well, yesterday I think a little light switch of his own turned on. I think he actively looked at the Christmas lights for the first time this season. He's moving a little more but let's go back to the looking. He was actually looking. I would talk to him on one side and his eyes would move to where I was.  It worked on the other side. This is after a few weeks of very little active looking and a lot of his head stuck to the left. He followed his silver space blanket right away and I couldn't have been more pleased with my whip cream.

And this space blanket thing is so awesome and so big, you can prop it and make cool space forts out of it! This was pretty much ideal because it closed out most of the light, which is easier on Christian's eyes and he stared, wide eyes, at his favorite sensory toy. If you're a special needs parent, go buy one NOW! About $3 in the camping section at Walmart. Tell your friends.

I'm hoping, praying, hoping, praying, this light switch I think I saw is the beginning of something. That would seriously be just gravy, baby.


Anonymous said...

I see that spark in his eyes :)

Way to Go Christian!!!!

Karen from CT

Debra said...

Shauna, what a beautiful site (and sight!)
And what a blessing you have there: Christian is one beautiful boy!
Meet your newest Google follower.
Hope you'll swing by and visit me too.
Peace be with you!

Paula said...

Hi Shauna.. It's Paula from Matthews Friends(harrysmum). I love your website and pics of your gorgeous children. just wanted to say that it is usual to see increased seizures at first on took 6 months to tweak the diet and wean the drugs that were making the seizures worse. Then we decreased the seizures by 85%. Good luck ... you sound like supermum to me..we will help you if we can xxx

ShaunaQ said...

Thanks for reading, Paula! Thanks for the info! I've heard this. It's just really really REALLY hard to be patient. But I don't have to tell you that!

I really appreciate the feedback, though. It's so hard with this diet and not a lot of people doing it.

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