Monday, October 08, 2012

Rough Waters

For some inexplicable reason, Soren has had an increase in seizures September and October. It's incredibly frustrating because we are doing everything right and when he's not seizing, Soren is so happy and engaged. So when the seizures hit, it feels incredibly cruel. Often these seizures happen upon his waking up in the morning. We'll hear him cry out and he'll seize having a Tonic Clonic seizure for a good 4 minutes.

Because this was happening too often, we increased his evening dose of Lamictal last Monday after getting the okay from his neurologist. Since Soren has been on the same dose of Clobazam and Lamictal for quite a while now, it seemed logical that he might have outgrown the dose (the boy has packed on a solid 6 pounds recently).

This Saturday, Soren was happy and smiling. I was away the previous weekend so I think he was just glad to have everyone at home. That afternoon, we planned to go to a Music Festival, figuring it's something we all could enjoy. But right before we left, Soren had another massive seizure and then was wiped out. We still went to the festival. Soren just slept through most of it. And when he woke up, he looked painfully hung over. So we headed home.

I tried not to get too frustrated by the Lamictal not doing the trick yet because it needs to build up in his system. But then, after waking up smiley and babbling this morning, Soren had another big seizure. It's just the most heartbreaking thing to watch and so horrible as a parent to not be able to fix it. Before the bus picked him up, he was awake again, a much braver person than me.

So we'll continue to hope that the Lamictal will kick in. Otherwise, we will once again try something else.


Sunday, August 12, 2012


The past two weeks, Soren attended a day camp called CommuniCamp.  It's for non-verbal "kids" (ages ranged from 5-24) to help teach them how (or build upon their existing skills) to communicate with iPads and Talkers (switch activated recording devices).

It was truly remarkable.  There were a variety of kids in there with serious developmental disabilities.  In the past, I'm sure it would have been easy to just "write them off" figuring they have nothing to say.  But these kids understand far more than folks give them credit for.  It's just that they are fighting through other challenges their bodies have given them--sensitivity to noise, stimming (uncontrollable repetitive body movement), spasticity or hypertonia, and seizures.  Despite all these challenges, a lot of their brains are quite "in tact."

And through the hard work of these kids' parents, teachers, and therapists, these kids have developed ways to communicate that were truly inspiring.

One young woman has a talker that she wears around her neck.  She can page through the selections and ask questions or give answers.  Two campers are able to activate a switch on a Talker with their foot to answer questions.  Two others can activate their iPad via a head switch.

The two teachers at camp--Robbie and Cindy--took the skills that these kids had and built upon them in these intensive sessions from 9:30-2:00.  The kids were never talked down to and they were asked to push themselves.  And every kid delivered.

They did a variety of activities.  Challenging games like "Minute to Win It" where a timer was started by one child and then another child had to see how many times he or she could press a "counting button" before the buzzer went off.

There was also "The Amazing Valenti."  Here kids were able to show off their abilities answering questions.  One young woman has a Talker that has two buttons on it--one labeled 1 and the other 2.  Robbie would record two answer options for each button.  For instance "Plumber" and "Florist."  She would then ask the girl questions like, "Your garbage disposal is clogged.  Who do you call?  A Plumber or a Florist?"  And despite the fact this girl seemed not to listen and appeared too distracted by all her stimming, she answered the questions right every time!  She really was The Amazing Valenti!

We've been working a lot with Soren at home and at school on his iPad, trying to get him to touch the screen to activate games, turn pages, etc.  And Soren has really improved on his.  He did a great job during the Lemonade Stand activity activating his iPad.  We recorded lots of phrases asking people to come buy lemonade.  Every time Soren touched the iPad, the voice was activated and he was doing it a lot on his own.  On the final day of camp, Soren performed in a play and did a fantastic job playing the Duck, hitting his iPad perfectly when he got his cue!

But I was inspired when I saw the boy at camp that had the head switch.  At times, touching things with his hands is overwhelming for Soren.  It can take a lot of prompting and hand over hand encouragement.  And sometimes he really just wants to wring his hands or put them in his mouth.

So, at camp, we tried having him use his head to activate a switch called a Step-by-Step talker and I was really impressed at how Soren did.  He did a great job in Minute to Win It using his head, counting up to 8!  Now, this could have been complete coincidence or involuntary.  After all, Soren moves his head around a lot.  But it's one of those things that if we can work with him, we might be able to make it purposeful.  We could start on a very basic level and then, if it worked, build up to getting a button that could activate his iPad.

It's a long road and these past 2 weeks only started the ball rolling.  I was very inspired by all these kids that showed me that they have a lot to say.  I know Soren does too.  And now I know about more tools to try and help him get there.

Thursday, June 07, 2012

Much Needed Update

Soren and I went to see his neurologist and dietician 3 weeks ago. And while I was pleased that he was averaging 4 to 6 seizures a month, they wanted better.

The first indicator that a change needed to be made was his weight. Soren has been weighing in at 48 lbs. for quite a while. And he's been stuck at 48 inches. But, when we measured him today, he was at 50 inches, but still at 48 lbs. This took him from 50th percentile of height and weight to 25th. His dietician was concerned that he wasn't gaining weight.

She wanted to bump him up 100 calories on his liquid diet. I was fine with that. It just means more Ketocal in the mix. But then she ALSO wanted to add a 100 calorie "real food" snack. She was concerned that Soren wasn't getting enough food by mouth, and eating by mouth is an important skill to keep up. And while I totally agree with her, I told her my frustration with feeding him and doing the diet because you have to get every bit in. And when Soren doesn't want to eat, he just dribbles it out. So I have to keep scooping it up and re-feeding it to him. Soon it becomes a big, spit-laden mess.

So we struck a deal. The snack is "bonus" food. Get as much as we can into him. If Soren's not in the mood for a snack, just feed him what he's interested in and move on. This really alleviated my anxiety about the snack. And Soren has REALLY been enjoying it (most of the time). The hope was that adding these 200 calories would 1.) help him gain weight and 2.) help control seizures.

To further aid in the seizure control, they also wanted me to put Soren back on Carnitor. Now, Soren was on Carnitor back when we started the diet originally. I had to crush up these fishy smelling pills and feed it to him with is food. Needless to say, Soren was not a fan of this nastiness. So, I discontinued giving it to him. But now that we have the G-tube, I could give it to him easily by injecting it!

I started him on a half dose, 3 times a day on a Tuesday. Then Soren--and everything coming out of Soren--started smelling fishy by Friday. He had a big seizure on Friday. Next he got REALLY cranky. That Saturday, Soren was clearly having discomfort. He had another big seizure in the morning. So, after giving him his morning dose, I decided to pause on the Carnitor. Especially after I read that the side effects can be stomach pains and nausea! He had another large seizure that evening. But on Sunday he was on the mend and by Monday he was his happy self again.

Thus, no more Carnitor. It doesn't agree with Soren's system to the point of giving him seizures. That's counter productive! But our boy is back, doing hard work, eating his snack, happy and smiling!


Monday, April 23, 2012

Vote for Trynity!

This month I am asking folks visiting Soren's blog to Vote for Trynity! Soren's friend and classmate Trynity is in need of an accessible van so that she can be transported in her wheelchair from home to school to therapy. To help achieve this goal, I have made a video and submitted it to a contest in the hope of winning her family a van. But in order to do this, we need your votes! Go to: (Sorry it doesn't actually link. Just cut and paste. Blogger changed their format and it totally sucks now.) There you can watch the video and then Vote for Trynity! If you put in Promo Code 889, we will get 5 votes instead of 1 vote. So put in the code! Thanks so much for your help! Amy

Saturday, March 03, 2012


Soren got his MIC-KEY button put in a week ago and I LOVE this "upgrade" in the G-Tube experience. Now instead of a 6 inch tube sticking out of his belly (which made me very nervous) he has this small little port. When it's time to feed Soren, I pop the port open, attach a tube that locks in (yay!) and do the feeds. It's quite slick. I'm still keeping Soren in the binder around his belly because I'm afraid Soren will rub his belly and accidentally pull out the button. I know how to put a new one in, I'd just rather avoid it!

And now that we got the upgrade with the MIC-KEY, we also got an upgrade on the Keto Cal that Soren uses for his Ketogenic Diet. Previously, we had cans of Keto Cal and this stuff doesn't really mix up all that well. So, with the G-Tube, insurance will cover the LIQUID Keto Cal! While I do have to give this stuff a good shake (REALLY FATTY!), it's much smoother and actually less prep than measuring out the powder every day. I do find it ironic that insurance would only cover this stuff when Soren got the G-Tube when it's actually formulated to drink and smells like vanilla cake mix. And I actually just tasted it and that's what it tastes like too! But Soren gets it through a tube, so the whole flavor thing doesn't matter!

But enough of all this boring, technical stuff. Let me tell you about the boy! For two months after his surgery, Soren was quiet and sad. I really did fear we wouldn't see his smile or hear his laugh again. We've gone full years without those, so I thought we'd lost them again.

Then about 2 weeks ago, Soren started smiling and laughing WAY MORE than ever before! I don't know if it's that he's finally fully recovered from his surgery (he can't really tell us if he's hurting) or if it's because he's much more hydrated thanks to the G-Tube or maybe it's that he hasn't had a seizure in 2 1/2 weeks. Possibly a combination of all those things!

All I know is that this boy now laughs and smiles and has a knowing look in his eyes. He seems to be telling us jokes in his own language and then laughing hilariously at the punch line. I was taking a chicken out of the oven last week and as it came out, it sizzled really loudly. Soren (who was in the kitchen with me) burst into laughter every time that chicken out! I think it was so loud and surprising, he just thought it was the best! Who knew a roast chicken could give such joy to a boy that's not even going to eat the chicken!

Nice to have our happy Soren back and better than ever!


Monday, January 30, 2012

G-Tube 1 Month + Update

Hey all,

Sorry I have been so remiss on updating Soren's progress. The good news is that, after all that initial trauma, he is doing really well. I must admit that I'm still a bit of a Nervous Nelly fearing that he's going to pull this thing out again. But now that his stoma is healed, I know that putting a new one in isn't horrifying the way it was one week after surgery. I actually have a replacement tube and was shown what to do. So, in a pinch, if I didn't pass out from fear, I know I could do it.

And I have to say, all the reasons for putting the G-Tube in have been confirmed. Soren got sick, and we were able to get all his KetoCal, liquid, and meds in no problem. Soren has had some massive seizures. 2 huge ones in one day last week. Again, food, liquid, meds--easy peasy.

I've also been feeding him regular food now and again to keep up those skills. And most times, he is ravenous and really pleased to be eating. But then there was that one evening he was a pill about it. I muscled through determined, even though it was stressing me out to get every bit of that food in. As I did I thought, "Yup. This is why we got the G-Tube!"

He should be getting his MIC-KEY Button in a couple weeks. You know, just as we've mastered this particular G-Tube! But everyone promises that the Button makes things even more easy. And he will be less prone to removing it accidentally.

On a fun note, we got Soren signed off to swim at school! I got him a fashionable wet suit-style bathing suit that covers his tummy so that nobody feels nervous moving him about in the pool.

That's it!