See Christian and Lola's ISR video!

Tuesday, January 11, 2011


It's good to write things down.

I started keeping a journal of Christian's daily activity. I write down when he wakes, when he eats, when he takes his meds, what his activity level is, accomplishments, seizure activity, and set backs.

I probably should have done this a long time ago but the whole task of writing down everything every day was daunting and overwhelming. But in December when the dietitian gave me a few papers resembling a calendar where I should scribble hash marks on each date to symbolize each jerk Christian had, that was daunting.

I couldn't run over to my little sheet every time Christian had a jerk, and, frankly, it became depressing looking at all those hash marks. And then when the frequency of the jerks increased...forget it. The papers were shuffled into a manila folder marked "Keto" and they remain there today. I'm not sure the dietitian will be happy about that but it is what it is. This is kind of my sanity we're talking about.

So I started recapping Christian's days and activities in my little journal. There you are, sanity!

I've got five weeks of journaled days and nights. It's given me a snapshot of this puzzle and I can reference really good days and look to see if there is any correlation with diet or environment. I've always been a more visual person and can memorize and learn things after reading them in black and white. This journal gives me a lot more learning moments than trying to rely on my memory. It makes me feel like I have some control in a situation is still uncontrollable.

This Keto journey has delivered us into Week 6. Christian's seizures and jerks are ever-evolving. I'd like to say I see an evening out of the activity, but if so, just ever so slightly.

I've seen other things, though! Like more head control. And me likey.

Christian has been rockin' it in the head control department. And it's really kind of all of the sudden. All of the sudden he sits in my lap while I'm supporting his midsection and he's just lifting his head. Like it's nobody's business and he's been doing it all the while. I don't have to coax him, or tickle the back of his neck, or hold his shoulder back. I guess he just decided that maybe he finally wants to know what's going on.

Now, excuse me, while a barrage you with more pictures of my son trying to hold up his big noggin'.

This is the progression of what he's been doing. He starts totally flopped down, then comes up a little more, and then holds it there...for, like, minutes! Like it's no big deal!

I love this boy! He can get his head up completely but he likes to hang out between 45 and 90 degrees. Whatever works, Dude.

And it's consistent! Every day he's keeping it up, for no apparent reason other than that he just feels like it now.

Well, I don't know if it's for no reason. It could be the Keto diet. One thing I have noticed is that throughout the day Christian will have these periods of clarity. He's interested in toys, he looks at us when we talk to him, and I don't know, but I'm thinking it might be the diet. I've heard progress in other areas can happen while on the diet whether or not someone is seizure free.

Oooh, claaaaarity!

On his good days, during tummy time, if he's supported just right, he will actually extend his arms forward to touch that toy.

One thing that's been happening the last couple days is crying. And crying, and crying, and crying. It started late in the afternoon with whimpers. Whimpers turn into whines. Whines turn into crying. And crying doesn't stop until Mommy and Daddy are holding him. Just to test if that's what makes him feel better, we put him down...and the crying starts again. So Manny and I have taken turns for the last four nights holding our boy until he goes to sleep. He certainly knows how to work us.

Thursday we're going to the Keto clinic at PCH for our check up. I'm excited because I'm hoping we'll be able to make some tweaks to this diet and get some better results in the seizure department.

Tonight I'm thankful for the sanity that journaling and blogging, for that matter, brings me. And I'm thankful for those who read this blog and keep up with my rants, raves, sorrows, struggles, and celebrations.

Tonight I am also hopeful for some things to come for our family and for Christian.


Kevin Jordan said...

Awesome news about Christian holding up his head! I love it!

Jendioguardi said...

I can't believe how far he's come and how miraculous he is. He's gotten so big and is such a joy to follow. This little guy is always on my mind as a reminder that even the smallest of soldiers can make a huge impact on the world. Such a blessing.

Post a Comment

Popular Posts