Wednesday, November 10, 2010

An actual update?

After months of biting my tongue, I guess it's time for full update. No surgery talk, just what's been going on. I'm still not quite ready for spilling about what's ahead. Maybe soon. Maybe not until we discuss specifics with the neurosurgeon on the 23rd. Because until then, I doubt my mind will be fully wrapped around the idea.

So, on to the latests...

As some of you know, we've decided to wean the ketogenic diet. We are in the very last stages now, and the anticipation of resuming a typical diet is growing by the day! Oh, I can't even imagine how much more simplified our life will become! Don't get me wrong, as each month passed, it did get easier...BUT, the fact that we will hopefully soon have the freedom to just go without an ice packed cooler with pre-made meals is going to change everything. No more strict windows of opportunity to get out and get back before mealtime. Trust me, as difficult as that's been, it much more stressful (for me) to line up, weigh, prepare, and pack food for an errand or outing. And I've tried to really stick to our schedule...Which, between Austin's naps and various therapies, it's not always easy to make it happen -whether I pack them or have to prepare it when I get home. I used to have days I would set aside to prepare the majority of meals for a week or two. I would freeze them and reheat them as needed. But, once we decided to start the wean, I've just been winging it everyday -especially since we starting lowering the ratio on a regular basis. Plus, I've gotten into such a rhythm that it doesn't take me nearly as long as it used to to get something whipped up. :) I remember the very first meal I made here at home. It took me nearly an hour to make his breakfast (egg, cheese, butter, cream, & applesauce)!! Now, it takes less than 15 minutes. Like I said, much easier! ;)

Another big one. We FINALLY (and I can't stress that enough) made it through the Zonegran wean. He'd been on that one for nearly two years. It was just one of those questionable ones that we would always second guess. The difference is absolutely remarkable! He's so much more alive now! That's why included so many photos. He keeps smiling and I keep snapping! I'll get 10-20 per sitting and when they're all smiles, it's impossible to delete! I've waited too long to get those again. Makes my heart all warm and bubbly. :)

We've also noticed quite a difference in cognitive and motor development since the wean. In addition to his brighter smiley faces, he's reacting to so much more. Initiating interaction, responding to requests and gestures, communicating his needs better...just to name a few. He's also starting to climb and has a new found need to explore his surroundings more. Before a couple months ago, I could strap his helmet on and let him go in his playroom with a gate at one door way and ottomans blocking the other. He'd stay there completely content. Or, I could leave him in his extra large play space (super large play pen) and he'd be fine there too. Oh, man...not now! He lets me know when he wants out of the play pen, and when I put his helmet on, he either reaches for my hand to help him climb over the ottomans or tries himself. He can climb onto the couch unassisted now (which takes encouragement, because he'd much rather be climbing OFF the couch) and has his route he likes me to take him throughout the house. (Because of the seizures, he still can't do this freely. When his drops came back last October, we had to start holding his hand again on the hard floors.)

So, how are the seizures after the Zonegran and diet wean? Well, they're not worse. But, he's most likely going to have surgery so they're very much still ongoing.

Saying goodbye to the diet is a little bittersweet. I'm dying for this to be over, yet a little sad to admit it was a failure for us. We saw so much potential in the beginning. Nearly two months of no drops was wonderful and to be honest, we probably wouldn't be weaning if they were still gone. With or without other seizures. The drops are what makes this 100x harder. The drops are what keeps him restricted and limited. No seizures are okay, but those complicate our already complicated life to an extent only a parent dealing with this would understand. To not be able to buy certain toys because they are a safety hazard, to have to make sure every seat has a shoulder harness, to have to pad everything imaginable, to have to carry him all the time or have him in a stroller because he cannot safely walk on his own has been indescribable as a parent. That's all I can say...there are no words to describe what this life is like with these drops seizures occurring on a daily basis.

THAT is why it's been so difficult for me to comment much on the possibility of surgery. Our life has been so full of accommodations that just letting him be is hard to fathom.

Austin loves getting his arms rubbed and tickled. He'll hold them up to you if he even senses your hand is nearby. In this case, he was holding it up for Bailey to rub. She obviously wasn't interested. ;)
But, I helped him out and got some giggles. lol

This was last night after an extensive play session. Don't know what got into the kid, but he decided to run sprints across his playroom until Chad intervened! We're still getting used to Austin sweating (he couldn't sweat while on Zonegran which we had to take very seriously as he could get easily get overheated. We had to strip his clothes off and his head was soaking with sweat (under the helmet). I just had to snap this new Nick Nolte 'do! lol

So his sweet little face has been breaking out since being on the diet. No one knows exactly what's going on, but it pops up and clears up on a regular basis.

I got him some awesome sensory balls for his bday. He LOVES the texture and I LOVE that I can usually get some belly busting laughs out of him when I rub them on his hands!

Flashing a smile full of Goldfish. He's finally on a low enough ratio that he can have them again. He enjoys every last one of them!


blogzilly said...

Sounds like all changes for the better, but as you know it only means slow changes and incremental differences, and I understand exactly what that is all about. While the seizures and the delays are still with you and the surgery is still hanging out there and so much uncertainty about everything, its tough to really enjoy even the most joyful moments, but you do take them when you get them, and you appear to be doing that, and fighting off the bad ones as you have to.

From the perspective of being on the outside of your life looking in, your doing all you can do under the heaviest circumstances. I'm hoping that the surgery will bring some kind of relief from the drop seizures. I really am.

kirstenpetree said...

I'm sorry I am asking this, but I thought he could sit up and walk and everything, is he not able to do so anymore? I just wondered since most of his photos are laying down.

Sorry the diet didn't work but I know the excitement of weaning it!! It is so much easier not to have to weigh everything and worry about all that!!

Holli said...

Kirsten, he can. It's just not as easy to get many facial expressions when he's running around. He's usually going full speed and I'm not that quick with the camera!

kirstenpetree said...

Ok good! I was worried!