Memorial Day Party

We've been going to the same Memorial Day Party for many years. It's thrown by a great family, the husband of which I used to work with, so it's a gathering of my former co-workers who have all become good friends. When the parties started out, some of us were married but none of us had kids. Now most of us are married and kids are running around all over the place. Now that we don't all work together, it's a chance to catch up, see how much everyone's kids have grown, and compliment each other on the fact that, despite our children growing, we all don't look a day older.

For me, it's also a chance to show how well Soren is doing. When he first started attending, he was not doing well at all. He had just started having seizures about 3 months before. He was floppy and we were very overwhelmed. But each year Soren came back, everyone would comment on his progress--more alert, better strength, moving more.

This year when we headed off, I was feeling a little sad, feeling like in the year that had passed, Soren hadn't really moved ahead much. I figured that, like the year before, we would sit on a blanket and I would either let him stretch out or sit him up figuring I would have to support him a lot. I was feeling rather sorry for him and myself (boy, I'm fun at parties, hunh?)

But when we sat down, I put him between my legs in "ring sitting" and then I sat back as Soren supported himself for a good 40 minutes to an hour! I was stunned. There was only one time when he toppled over onto my legs--and that was near the end when he was tired. I didn't need to touch him, I was not reminding him to hold his head up, and he just sat there like a big boy. I don't know if anyone else was impressed by his progress, but I was blown away by it.

Clearly I had not sat like this with him in a long, long time. So the credit for his progress doesn't go to me. It goes to Soren's therapists and his teachers. They push that boy to the limit. I went to school the other day and Soren was sitting up against a wall--he was crumpled over, but I know when he was first seated there he was sitting up. And I know he could pull himself up if he wanted. His teachers put him in this position a lot--this way he can't fall back and rolling forward onto a soft mat is quite harmless. And he can sit there on his own for a long time!

Oh, and the credit also goes to Soren. Despite hating to work, he works very, very hard. He may not like it, but he does it, and he's changing because of it.

But back to the party. It was great to see everyone's kids running around. Sometimes this makes me sad because Soren isn't running with them. But I was so happy with what he was doing, I didn't think about what I wished he was doing.

That day one of my friend's sons asked his mom a very good question about Soren. He asked how much fun Soren has in a day. He was very concerned about this. She told him that while Soren may not have fun like other kids, when he's not having fun, he lets people know it (and boy is that true). But Soren was sitting there, looking around, observing as he does. He was outside with the breeze blowing and people laughing. Though he was sitting, he wasn't stressed about it. He was in the middle of the action, which he enjoys. So as fun goes, I think Soren was enjoying his version of it. But it was a good question that really made me think.

Amy

A Disturbing Discovery

About 3 or 4 months ago, Soren started waking up with a lot of pain in his hips and legs. He would wince in pain and do these silent screams when we would try to stretch him out or pick him up. But once he was up, he was fine. He would kick his legs and become his happy self again. We had no idea what was causing the tightness and pain. I asked his teachers and therapists to keep an eye out for this as well but they hadn't noticed anything.

Then last month, one of his Physical Therapists noted Soren wincing when she was working his legs and hips. So I took him to his pediatrician who did X-rays and everything looked fine. He suggested doing blood tests but thought it actaully might be seizure-related. I thought this might be possible, but it seemed strange since he was only having seizures one or two days a month. And then he had gone that 40 days without anything but still had these morning aches and pains.

But then the other night at 2 am, Soren woke up hungry having not eaten well the day before due to the excessive heat. When I put him back to bed, he started doing this rhythmic facial contortion and body crunch--a seizure. Aaron and I then realized that he has probably been doing this at night, sight unseen, for these past months. Thus the 40 days we thought were seizure-free were merely daytime seizure-free, nighttime seizure-rific (that's not a technical term). The good thing, if there can be a good thing when it comes to seizures, is that Soren seems to recover from these better than other seizures. Still, no seizure is a good seizure.

So what to do? Well, we're going to do blood tests just to confirm there is nothing going on considering all the drugs we've pumped into this boy. Then we're going to work on pumping another drug in! We decided to finally try the Clobazam. I have a small stash of 40 pills provided by another parent. But to get more of this non-FDA approved drug, Soren's neurologist needs to write a letter of medical necessity (because it is a form of Valium) and a prescription. Then the one pharmacy in the US that is allowed to distributed this drug is given this info and sends the meds from New York to UCLA. They then send it to us.

This all may take 2-3 weeks because Soren's doctor is out of town. And I'm sure when he returns, he will be swamped with many requests. In the mean time, I'm checking if we can wean Soren off either the Zonegran or the Lamictal that he is now on.

I'll keep you updated.

Amy

The Comeback Kid

I just gotta say, Soren amazes me.

Sunday, he's got a fever, he throws up, and he has 3 seizures.

But then he sleeps. Like a log. Not a stir. It's what all of us should do when we're sick as hell. And he does it like an Olympic Champion. Soren is the Gold Medalist in Sleeping When Sick.

So then when he wakes up, he eases into drinking clear liquids. With his fever gone, the next day he's like a new boy. He can eat. He's perky. I make him do nothing the entire day and he actually seems a bit peeved, giving me looks like, "Seriously, Mom, I am so bored!"

By Tuesday he's back at school. When he got home, he was giggling his butt off. Today he was awake and happy, went to school, went to horse therapy. It's as if Sunday never happened.

When I put him to bed tonight, he was happy and healthy. That's my boy. He is the champion, my friends.

Amy

40 Days, But Not Counting

Soren made it a full 40 days without seizures as of this Saturday. But then on Sunday he woke up quite cranky and a bit warm. He had his milk and then proceeded to throw up everything in his tummy. Aaron got him into the bath where Soren had a 2 minute seizure. Thank goodness Aaron was right there to keep him safe.

Soren was conked out for most of the morning. When I checked his temperature, it was at 103. We worked the rest of the day to get it down, using Tylenol suppositories and oral Motrin once he was awake. In between that he had two more tonic-clonic seizures so I gave him Diastat. Finally around 4:00 he woke up and drank Pediasure, which he kept down. I got more of that and some chicken broth into him. His fever didn't break until 10 pm.

Today he stayed home with me and was both fever and seizure free. Still not that interested in eating, but I can't blame him. Otherwise he's been in good spirits, barely sleeping. So far none of us have gotten sick.

So our new count begins today, Cinco de Mayo (and Soren's great grandfather Art's birthday). Maybe we can make it to 50 days this time!

Amy