Tuesday, May 25, 2010

Rusty

That long break from the internet made me a little rusty. Collin's doing well this week. We have a light therapy week, so we're enjoying taking walks in the mornings and swimming in the Water Way Babies pool. Collin's ketones have skyrocketed after going back to olive oil. Man, I love being right. He seems averse to having anything in his mouth right now, which makes practicing oral feeds a little tough. It may be his last two teeth coming in, because he's also been grinding like crazy this week.

Here are a few pictures I've neglected to share over the past couple of weeks:

Here's Collin trying on DeeDee's sunglasses. I think he really pulls it off.






We met some friends in the park for a bocce tournament and Collin had a great time cheering everyone on.




And here's Collin being a picture hog at Aunt Tess and Uncle Kevin's baby shower.

Thursday, May 20, 2010

Direction

As we in my family now say whenever we call at an unexpected time: Nothing's wrong.

Collin stopped having seizures last week and has bounced back fairly quickly. He's happier and more vocal again and has been doing some great things in physical therapy with rolling and lifting his head. We're weaning him off of clonazepam finally and he is now on all real food. I calculate his meals using the Ketocalculator program, then carefully measure and weigh the ingredients for the next day's 5 meals (plus an extra just in case I, you know, shoot half of a meal on the ceiling). This means that Collin is officially off the feeding pump. He gets all of his meals by syringe, which is portable and more flexible. We have also started Collin's full dose of branched chain amino acids (BCAA). At first, I was worried that they were having an adverse effect because his ketones dropped quite a bit earlier this week, but then I realized that I had also switched from olive to coconut oil around the same time. Since switching back to olive oil, his ketones seem to be rising again, so we will be keeping an eye on that.

All that to say: we're fine. I just needed a break. Mother's Day ended up being a little harder for me than I anticipated, not because I don't love being Collin's mom, but because there are just a lot of emotions to process and expectations to adjust when your child is facing so much more than you could have anticipated. It changes their experience as a child and consequently yours as their mother. Plus, Collin was in the worst of his seizures around Mother's Day, I got sick, and was running too low on sleep. So we fell back on the healing powers of 'laying low.' We canceled all appointments, therapies, and unnecessary responsibilities for a week to allow us to focus solely on the basics: Collin, each other, eating, and sleeping. That's right, internet didn't make the list. It shocked me too, at first. It was a very good thing, though, and we emerged not only better rested and relaxed, but with clearer minds and a bit of direction.

Because we're coming to a point where we're starting to look down the road (just a little ways) and think about what we want our lives to look like. The downside of living only in the present, while it is totally necessary during 'survival mode' times, is that you can feel kind of stranded where you are. Like there's nothing to move toward. And that's just not true. Of course, we don't know a lot about what has caused Collin's challenges and we consequently have no idea what his future holds, but we do know what we want for our family: a normal life. Normal for us, anyway. With friends and family and play groups and vacations. With hobbies and date nights and just eating up all the little pleasures of a simple life. Yes, there will be complicating factors that wouldn't be considered normal to some people, but that's okay. Yes, there are lots of things we could be afraid of, but what's the point? It doesn't make us any better prepared and it doesn't benefit any of us in any way.

This might seem like an obvious goal, but it has taken us a while to get here and we're still just on the brink of it. I guess it's kind of the acceptance stage of the grieving process. And as far as making it to that goal, we don't have a clear cut plan to execute. I think it just helps to know where we're going.

Wednesday, May 12, 2010

Okay

Just a quick note to let you know that we're okay. I haven't felt like doing much writing recently, but we're all fine.

Collin is still seizing daily, though the number of seizures has dropped slightly. We are in the process of adding branched chain amino acids to his diet and I have also decreased the amount of cream in his food so that his diet isn't quite so dairy-heavy.

Aside from that, we're just plugging along, trying to take it easy and get some sleep. I'm thinking a few things through that I will share soon if I can ever get them straight in my head.

Thanks for the calls and emails checking on us. We don't take that for granted.

Saturday, May 8, 2010

Wrong Again

Oh well. I should be used to this by now, I guess.

Collin seized it up all night last night and had some doozies today.

I'm frustrated. And weary.

Friday, May 7, 2010

Best Guess

Well, judging by the 20+ dirty diapers over the past two days, I would say we've been dealing with some kind of tummy issue here. I'm thinking he and I had the same mild 24 hour virus, because he went from one seizure Monday to 3 seizures Tuesday (mostly at night -- the same night I felt so bad) to 21 seizures Wednesday. Tuesday and Wednesday, his ketones were a little lower, which sometimes happens with pain or discomfort, and he was having a dirty diaper during almost every seizure (this isn't stuff you can call your pediatrician about for advice, folks).

Wednesday evening, we gave him one extra clonazepam because he had not been able to sleep longer than 25 minutes at a time in almost 24 hours due to the seizures, and that seemed to give him the nudge he needed to get over the seizure threshold hump and into sleep. He fell asleep in his highchair at 7:00 pm and stayed there until we transferred him to bed at 10:30. That whole time, we were whispering and tiptoeing and moving as little as possible, because just as a seizure will wake him from sleep, getting startled from sleep can bring a seizure. And, strange as it may seem, I kind of enjoy those times. There's a kind of excited relief that maybe the seizures are gone for a while. The house is so quiet and you're not worrying about all of the other things that need to be done. It's kind of like when a blizzard or thunderstorm ruins something important but then you realize that you're okay and start making the most of it by reading by candlelight or scrounging the stuff for hot chocolate. We carried Collin's highchair into the living room and took turns taking showers and watched Lost together. Then Kyle gave me the best gift ever and slept downstairs with Collin so I could get a good night's sleep finally. I don't think I moved from 11 till 6.

Then yesterday, the seizure count dropped to 2. The dirty diapers slowed down, too, and even though he had a seizure during each nap, he actually took naps and was alert in between. No seizures yet today, but that doesn't necessarily mean anything.

The thing is, there is hardly ever any way to tell what you're dealing with in the midst of it all. Partly because you don't have enough information yet, and partly because you can't think straight and constantly find your mind wandering off to dark places where it has no business being. Time and perspective are what usually give you a better idea of what has gone on, but who wants to wait for that?

Wednesday, May 5, 2010

No Idea

I wish I could say that Monday night's seizure was a fluke.

When I laid Collin down for his afternoon nap yesterday, he started seizing again -- a mixture of tonic and tonic-clonic seizures. There were just a couple in the afternoon and one or two at bedtime. I had to beg out of the first part of my Collin duty because I got really ill all of a sudden (something I ate, maybe?), but when I took over at 2, he started having one or two an hour for the rest of the night and neither one of us slept from that point on.

Of course, I'm full of speculation as to what might have brought this on all of a sudden - more teeth? a tummy bug? transition to food? Who the heck knows. Not me. So we have put him back on a Tylenol/Oragel regimen and are just hoping that he will be able to get to sleep at some point so he can start building his seizure threshold back up. No luck so far today. He fell asleep on me about an hour ago, but then woke up with a seizure after ten minutes. He's been awake since then, even though it's obvious that he's exhausted.

This has also postponed the clonazepam wean we were planning to start this week. Collin has been officially off of Keppra for a while now and was doing so well that we had decided we were ready to start the next (and last) wean. We're not holding off because we think he needs the clonazepam, but rather because we don't want to aggravate his seizures by giving his body one more stressor to deal with.

So, the best thing that could happen in this house today is two big old fatty naps - one for Collin and one for mama. Keep your fingers crossed for us.

Tuesday, May 4, 2010

One of Those Days

At one point this morning, I just stopped for a moment to look at the walls and ceiling and estimate how much of Collin's morning meal I would need to replace.

That's a pretty good picture of our day so far. I won't go into all the details, but it involves a finicky syringe shooting pureed cream/beef/green beans with the force of a fire hose. Twice. Because I'm a slow learner, apparently. And when I finally got what was left of the food in a syringe and Collin's tube plugged in, it didn't latch, which I didn't discover until later, when I found him sitting in a puddle of food and medicine. The fiasco ended with me wiping down the counters, cabinets, ceiling, walls, and floor, washing everything that was sitting out, giving Collin a bath, and taking a shower. Because not only was it in my hair and down my shirt, but also the creases of my eyelids. And, naturally, the face of the shower head fell off while I was cleaning up.

Collin had a seizure last night, which is what I blame for the catastrophe. He had been exactly two weeks seizure free and then, seemingly out of nowhere, had a seizure at bedtime. I am fully aware that one seizure in two weeks is a dream compared to the dozens he used to have in a day (hundreds if you count back to spasms), but as I'm sure other parents of kids with seizure disorders will attest, the first seizure after a seizure-free period is like a punch in the gut. This made for a lousy night's sleep for all involved, and so I was not at my prime this morning.

Clearly.

Monday, May 3, 2010

Proof That Muscle Weighs More Than Fat

Collin is in the 10th percentile of weight for length.

And the 75th percentile for fat stores.

Sunday, May 2, 2010

Oh Well

I woke up yesterday morning to a clap of thunder, and that cinched it. I had been wavering on whether or not to tough the race out with my foot and the rain, but when lightning entered the picture, it made the decision easier.

Rest assured that, as soon as my stupid foot heals, Collin and I will be running our own, private Hope & Possibility 5K right here in our neighborhood, and we'll be sure to post pictures. Thanks to all of our fantastic supporters.