soren rogers

G-Tube 1 Week Update

2011-12-27T07:32:00.001-08:00

So I was going to write yesterday about how great everything has been going. Soren had been getting more and more comfortable, recovering from his surgery. I was getting more and more adept and giving him his feeds through the G-tube. Why, in 5 days, I could crimp, flush, and feed with this tube like a master. (Those of you who know G-tube language get what I mean.) In fact, I could see how this was going to make my life significantly easier. I could do the feeds by myself, no sweat!

We were so optimistic and pleased with how things were going, we decided to head to Bed, Bath, and Beyond to get new pillows. Yay us!

But then, as I was wheeling Soren to his room to get dressed for our outing, he caught his arm through the 6 inch G-tube sticking out of his belly, yanked on it, and pulled it out. It was horrible and petrifying for us. Soren was immediately in terrible pain.

Now, in all honesty, G-tubes come out all the time. They warn you that this can happen. People can grab them and pull them out. The trouble is, Soren only had his surgery a week ago, so he's obviously still healing. In three months, everything would be different. He'd be healed. He'd have what's called a Mic-Key button put in which is more flush to the skin and less prone to getting pulled out. And, in the event that it was, I'd have been trained to just pop one back in.

But yesterday when Soren pulled this out, we knew exactly what our next course of action was. Get to the ER! Stat! See, the hole where the G-tube goes in can close up rather quickly and then you're back to square one, having to start the process all over and have surgery again. I was told that we had to get a new tube in within 15 minutes (turns out we had more time than that). But with that information, we loaded Soren up in the car and headed immediately to the ER two blocks from us.

Turns out December 26th, the day after Christmas, is one of the busiest days in the ER all year. But when I told them what had happened, they tended to Soren immediately. They told us not to worry. That this happens all the time. But, once again, Soren had surgery a mere 7 days before, which complicated the ease of fixing this. And because we weren't at Children's where they specialize in kids, this ER didn't have the proper G-tube. But they did the next best thing, putting in a Foley to keep the hole open. And then, the nurse did the best thing ever. She gave Soren a surgical binder (a girdle) to wrap around his tummy so he wouldn't accidentally yank the tube out again. It's brilliant! Why weren't we given this before?

After we got the Foley in, we headed straight to Children's. Yes we visited not one, but TWO ERs the day after Christmas! They also assured us that this happens all the time and that they could just pop a new tube in. Until, like the other hospital, they realized his wound had not healed up yet to allow this simple procedure.

The thing is, when they cut this opening for the G-tube, the cut through your abdominal wall and your stomach. But then they don't sew up the gap between your abdominal wall and your stomach. Instead, the body naturally heals these two areas together over the next 3 months. But now, there is a gap and if you put a new tube in, you want to make sure you've landed the tube in the stomach and not in the space in between. If that's where you put it, then the feedings go into your Peritoneum, you can get an infection, and die.

So, the ER doctor couldn't just pop this in. We needed a doctor from the GI team. So we got a great doctor who came and did that. However, she warned us that if it didn't work, Soren would need to get admitted again and have surgery again the next day. But, she did easily get it in (thanks to the Foley from the 1st ER). Our next step was getting Soren' X-rayed to check that it did, in fact, land in the right place. Everything checked out a-okay and, 5 hours after this endeavor began, we headed home.

And while everything seemed peachy keen, the problem is that in changing the tube, they changed my skill in using it. This tube is shorter, so crimping is more difficult. The parts don't fit together as well, so I need an extra set of hands to make sure tubes don't pop out. And I'm now incredibly jumpy whenever Soren moves his arms.

So I'm actually hoping I can take Soren back to Children's today to see the GI nurse to get advice. I can't continue with the tube like this. And hopefully when I post next I'll have better news.

Amy

G-Tube Update

2011-12-21T12:16:00.000-08:00

Yesterday was really rough for Soren. Lots of pain from the surgery site. So he was getting regular doses of morphine, which seemed to help briefly.

And he was REALLY hungry, which was also making him frantic. He was wringing his hands like crazy and any time he got close to touching his belly, he'd flinch. It was hard to watch and not be able to help him.

He didn't get Pedialyte until about 4:00 pm, which means he'd gone about 48 hours without anything in his belly. He then started getting his Keto Cal a little later and the real calories started hitting. He finally got a bit happier.

With the food in him, he actually had a good night. And this morning he's been giving a few smiles and flirting with the nurses. He's getting back to his silly self.

Here he is happily watching Cars. Next up, Kung Fu Panda!

Amy

G-Tube

2011-12-18T18:35:00.000-08:00

I'm writing from Children's Hospital the night before Soren's surgery for his G-Tube. We came in a day early so that Soren could get IV fluids the night before his surgery. Like any other surgery patient, Soren won't be allowed to eat or drink anything after midnight tonight. But because Soren is on the Keto Diet, it's important to make sure that he is well-hydrated prior to his surgery. This will help prevent seizures tomorrow and help him through being "food-free" tomorrow.

I would explain the whole thing to you all, but quite honestly, it's all way more complicated than I can understand. The best I can understand is that Soren has to have specific IV fluids to make sure he's hydrated but also to make sure that he isn't thrown out of Ketosis. So (and I'm hoping I'm getting this right) there will be a certain level of glucose, but not as high as a patient NOT on the Keto Diet would get. The nurses will be checking Soren's glucose level to make sure he's a-okay.

After the G-Tube is put in, we will give him his Keto formula through the G-Tube. At first, this will be half-strength and then we will build up once he seems ready.

About the G-Tube and our decision to put it in. This has been a long and hard decision that we've debated for years. When Soren started the Keto Diet over a year ago, we started thinking about it all the more. One of the challenges with the Keto Diet is that you have to get every bit of food and drink in for it to be balanced and thus to control the seizures. Plus, when Soren started the diet, we had to add more fluids to his daily intake because it is a high-fat diet. We have to make sure that fat is moving through him and not clogging up the system.

Soren has always been a good eater. BUT when he doesn't feel like eating, he defiantly holds the food in his mouth and then dribbles it out. With the Keto Diet, this can get REALLY frustrating. When this happens, feeding him can take forever. Also, Soren's never developed the skill to feed himself or to drink from a cup. He can only drink from a bottle that someone feeds him (he doesn't hold it himself). So, now that Soren is 8 years old, holding and feeding him has become really physically challenging on my body. During the times that Soren chooses not to eat solid food, I feed him his diet via formula through a bottle. But sometimes he doesn't even feel like drinking and dribbles that out as well.

Add on top of that trying to get his meds in which are essential. And if Soren is sick getting fluids into him is even more important yet even more difficult!

So, we finally came to the conclusion that we had to get Soren a G-Tube. Part of the reason this is hard is because, other than his seizures, Soren's a really healthy kid. The thought of putting something foreign in his perfect little body was really hard for us. Plus, we've heard both good and bad stories about the G-Tube. With a foreign object, there is always risk of infection. Also, if we don't continue to feed him by mouth regularly he can lose that skill. (So we plan to feed him regularly, but give him liquids via the G-Tube.)

But, finally, the good outweighed the bad, and we decided to do the surgery. It's worked out well that he's having it right before Winter Break, so we'll have that time to learn about the G-Tube and practice with it before Soren goes back to school. I know his teacher and aids will do a great job helping him with it. Overall, our goal is life improvement for everyone involved--Soren and us.

Please think good thoughts for us as we venture into this next stage of our journey with Soren.

Amy

Thanks for the Donations

2011-12-16T17:00:00.001-08:00

Hello everyone,

I want to thank you all for your generous donations on Soren's behalf over the years. Thanks to you all, we've gotten Soren numerous Stem Cell Treatments and were able to get our awesome Accessible Van.

I also have to thank the Talbert Family Foundation, who very kindly and generously made Soren one of their Talbert Kids, allowing you all to make Tax Deductible Donations.

But the time for donations for Soren is now over. Soren's account at the Talbert Family Foundation is now closed allowing them to offer their support to new kids in need.

Thank you so very much for your kindness. It has meant the world to us and our sweet boy.

Amy

Ketogenic Diet: One Year

2011-10-17T05:41:00.000-07:00

It's been a little over a year since Soren started the Keto Diet. And I must say, it's been totally worth the work and I've actually gotten good at the whole measuring, heating, and mixing of the foods.

As we came to this one year anniversary, Soren did hit some bumps in the road. He was cutting 2 molars and 2 front teeth which caused him to get an ear infection. We of course didn't figure this all out for a little bit. The week before we figured it out, Soren was wringing his hands like crazy to the point of breaking his skin. We still didn't know about the ear infection, but his nose started running so we gave him pain-killers. We thought he had a cold, took him to the doctor, and confirmed that he had an ear infection. But still, no fever so it was unclear if this was a cold or not.

Then that same day, we went to the dentist who told us about his teeth and that teething can cause ear infections! So we started Soren on antibiotics. Then, as happens in our family, ALL of us caught colds, causing Soren to feel even lousier!
Through this (the teething, the ear infection, the cold, the antibiotics), Soren did have seizures. But only one a day and only two for the week during the two weeks of this ordeal.

The even trickier part for me is that during this, Soren decided he didn't want to eat solid food. His mouth just wasn't happy about eating. So I had to do his Keto Cal shakes (a specially formulated powder) or this special Egg Nog. The nice thing is that both of these are totally balanced ketogenically. The bad thing is that I was afraid Soren would forget how to eat during this ordeal.

Finally we got through it all. We were on the final wean of his Depakote--only half a pill once a day. I was nervous after this bad round of stuff, but I braved it and took that last dose out. Sure enough, he had some final withdrawal seizures. But now he is totally off the Depakote. Yay!

And then yesterday I finally braved giving Soren solid foods again. I was hoping that he would eat it and not hold it in his mouth as he is prone to do or dribble it out as he is prone to do after holding it in his mouth forever. It was a slow start and he did indeed want to hold that stuff in for a bit. I feared I'd have to switch to a shake yet again. But we both toughed it out and he finally ate it all like a trooper.

AND, during all this, Soren turned 8 years old! Whew! It's been a busy, exhausting, rather stressful month. But, as usual, we made it through. Now Soren is back to being his babbling, energetic, sometimes smiling and laughing self. And we are confident this will get even better.

Amy

End of Summer Update

2011-08-26T13:38:00.000-07:00

It has been a busy summer and, thus, I have not gotten around to posting.

The great news is that Soren is still doing really well on the diet. But, of course, there have been some bumps in the road.

June--Due to an ear infection, Soren had to be on 3 rounds of antibiotics. During this time I, somewhat foolishly, tried to continue to wean him off Depakote. It was down to 1 morning and 1 evening dose. I cut the morning dose during this whole antibiotic thing. Soren had a few strong seizures, so I assumed this was related to the Depakote and put the morning dose back.

However, at this same exact time, I started him on his 3rd antibiotic. The doctor who prescribed it was from an Urgent Care in Carpinteria. Super nice doctor, but I don't think he fully understood the Keto Diet (why would he?) and the antibiotic prescribed had too many Carbs in it! So, I took him off this as well.

Once I put the Depakote back and stopped the antibiotic, the seizures stopped. The question was, which of these was really affecting Soren?

July--We went to the neurologist and discovered the possible answer. Being on antibiotics can lower one's seizure threshold! So being on 3 rounds of antibiotics can REALLY lower one's seizure threshold. (not to mention that the ear infection itself lowers the seizure threshold)

Now that Soren was clear of his infection, she encouraged me to continue Soren's Depakote wean. So I eliminated the morning dose, and we didn't have any side effects. In fact, Soren didn't have any seizures in July!

August--I was now ready to drop out Soren's last evening dose of Depakote. His doctor advised me to give him half for a couple weeks before cutting it out completely. She warned me that Soren may have withdrawal seizures at this point. And, sure enough, I started the wean on Sunday and he had 2 big seizures this week. Poor guy!

The other thing I had to do this month was get Soren's blood drawn so they could check how things are going on since he's been on the Keto Diet.

One benefit of the Keto Diet has been that Soren's had a lot more energy and "tells" us when he likes or doesn't like something.

The problem is, when he doesn't like something, he puts up quite a fuss! This makes drawing blood REALLY difficult. I mentioned this to his neurologist and she gave me the okay to give Soren some "relaxing medicine" to mellow him out. So I did that this morning and the blood draw went off without a hitch.

School starts on Monday and I think Soren's really going to be happy to be back. We're just not as fun and exciting as all his friends.

Amy

Keto through Colds

2011-06-03T13:16:00.000-07:00

Hey all,

Today I was going to very happily post how well Soren is doing. And then he had a big, awful seizure during breakfast. Poor kid. What a way to start the day!

Still, the boy is doing great. Especially considering he's been sick for about a month! He caught a cold Mother's Day weekend. Despite that, he didn't have any seizures. Until the NEXT weekend! That seizure marked the end of a 6 week stint with no seizures! Not to shabby!

Especially since just a few days later, I found out that Soren's cold had led to a raging ear infection in his left ear. So the fact that he only had 1 seizure through that was very impressive. So Soren went on antibiotics to clear the ear infection. (And probiotics to help his tummy)

But then on the day of his last dose, last Friday, he caught ANOTHER cold! We went in for an ear recheck this past Tuesday and while the infection in his left ear was better, he now has one in his RIGHT EAR!!! So another round of antibiotics was started. Soren is clearly feeling better. Still, this has taken quite a toll on him, so it's no wonder he had another seizure.

We're hoping with this round of antibiotics we'll get him all cleared up and healthy going into the summer. (Of course, I just caught my 3rd cold of this year. Ugh!)

A note on getting through colds on the Keto Diet. We can't use regular, children's meds because they have sugar in them! So, no Dimatap or Motrin. Instead he got Tylenol suppositories, nasal decongestants, and Vicks Vapo Rub. And for his antibiotic, we can't do the liquid stuff. Instead, I crushed up non-coated pills and put them in his food. Yuck!

And then there was the challenge of getting fluids in him. Turns out, Soren loves warm chicken broth, which is allowed on the diet and really seemed to sooth him.

All in all, though, Soren is doing great and has been quite a trooper through a tough time.

Amy

Keto Update: 7 Months

2011-04-10T12:57:00.000-07:00

Soren is going in for his 7 Month Keto Check-up tomorrow, so I figured it was about time I did another update!

The great news is that Soren is continuing to do fantastic on the diet. When we decreased his calories to 1000/day, we got his seizures down to 2-3 a week. These seizures usually happened on Sunday and Monday, which indicated to me that they were triggered when Soren wasn't burning as many calories as he did at school (and then he was still ramping up on Monday). I even tried to increase his activity on the weekend, but I just couldn't get him as active as he is at school.

His Keto dietitian gave me the okay to drop Soren down another 100 calories bringing him to 900 a day. This meant adjusting all his menus, but it was totally worth it. Soren had 2 weeks without any seizures and then had one last Saturday. But now he has gone another week without any. So clearly this drop in calories has made him more ketotic. And with deeper ketosis, we have better control!

Because of the decrease in seizures, Soren is continuing to get more expressive. He is now making amazing noises that he never did as a baby. He's experimenting with his voice and really working on communicating. If only we understood Soren Speak!

Another bonus is we are getting smiles and laughs back again. He seems to give much more at school than at home. But even we've gotten a few good rounds of giggles recently.

My next goal is to get Soren off Depakote. He was on 3 pills twice a day and I've gotten him down to 2 twice a day. We'll see what his neurologist says tomorrow, but I'm hoping over the next 4 months I can get rid of it completely!

Here's a little sample of our chatting boy while he was working in his Kid Walk.

Amy

Keto Update: 4 months +

2011-01-23T09:52:00.000-08:00

I have a calendar where we mark how many seizures has each day. And there was a definite increase in December compared to the prior months on the diet. Still, it was less than before we even started.

Now, this could have been caused by a few things. 1.) We started weaning him off one of his meds. Granted, we were taking this VERY slow (only dropping out 1 of the 6 pills he had during the day), but coming off anti-seizure meds can be rough, even if you take it slow. 2.) The diet wasn't quite tweaked as well as we wanted, which is also possible because it's new! or 3.) An unexplained crappy month of seizures.

So, before his next neurologist appointment, Soren had his massive amount of blood work done. (which no matter how well I plan, always finds a new way to be horrible)

At Soren's last neurologist/dietician appointment, we discovered that Soren was not as ketotic in December as he was in October. He definitely was in ketosis (I knew that from the urine ketostix), but the blood work is, of course, more exact and provides real numbers.

Now, less ketosis means less seizure control. So finding out the cause is REALLY important!

But WHY was he less ketotic? I was feeding him the same exact foods. And Soren doesn't go around grabbing a cookie or a handful of chips. Well, the other thing we noted that was Soren, like many people during the holidays, had put on some weight. About 3 lbs. Again, this is the opposite of how the diet is supposed to work. If anything you lose weight!

The most likely answer is calories. Soren is on 1200 calories a day. Now, personally, I've thought this was kind of high from the beginning. (Actually, he started on 1300 and we dropped it after the 1st month.)

I mean, Soren's not running around like most kids. He's just not burning calories like a typical 7 year old. Plus, in December he was out of school for a chunk of the month (and specifically when I got his blood work done). So, he was probably burning even fewer calories because getting wheeled around in his chair while Mom Christmas shops is less than aerobic.

The solution? Drop his calories another 100.

And while I wanted to continue weaning him from Depakote, we decided to pause until we could determine if this calorie drop helped decrease his seizures.

I am happy to say that it appears to be working. I haven't seen any seizures for 4 days, which is our longest stretch in a while.

So let's cross our fingers that this calorie decrease makes Soren more ketotic and he gets better seizure control!

Amy

Keto Update: 3 1/2 Months

2010-12-27T17:06:00.000-08:00

Sorry for the terrible delay in this update. I think I kept waiting for things to settle down with the diet and Soren's seizures, but since they don't seem to be, I better do an update on the current state of things!

Soren is doing fine on the diet, but his seizures have increased compared to that wonderful 2 weeks without any activity. He's having 1-2 a day, ranging from very mild to big whompers. Still, it's less than he was having prior to the diet, so that is good. And he seems to recover quicker than before, which is also good.

And while we don't have the seizure control we'd been hoping for, Soren continues to be much more happy and alert. He's making lots of interesting noises, really making use of his voice. We get more little smiles and he is taking fewer cat naps. So we still feel that the benefits of the diet are outweighing the inconvenience.

I think the trickiest factor in full seizure control is making sure Soren eats and drinks every bit of the diet. There are days where he'll eat just fine, but then he won't drink the cream at the end of his meal. Without drinking this, he isn't getting a fully balanced Ketogenic meal. And without this, seizures are more likely to occur (which is what we are witnessing).

However, there are two ways to get a fully balanced keto meal into him. Through the KetoCal shakes and through a special Egg Nog recipe (heavy cream, egg beaters, and vanilla). Whether he drinks one drop or the whole bottle, eat sip is Ketogenically balanced. So, since Soren is on Winter Break from school, I've decided to try an experiment. I'm going to put Soren on an all-liquid, fully balanced Keto Diet to see if we get better seizure control.

The only hitch I can see with this is that Soren will get bored with these two meals of Keto shakes and Egg Nog. The good thing about the shakes is that I mix them with Powerade Zero, which has many flavors for variety. So we'll see if Soren is hip to this and if it decreases his seizures.

I will report the findings of this latest experiment as soon as I have them!

Amy

Keto Update: 2 Months

2010-11-12T06:17:00.001-08:00

Two months in, I have to say, Soren is still doing remarkably well on this diet. Our total number of seizures from October 11-November 11 was 16! Considering Soren could previously have 16 seizures in a day, that's flippin' awesome!

This low number is because we have a GREAT 2 weeks of seizure freedom. It was amazing to see how much more alert and vocal Soren was during this weeks. We started seeing more hits of smiles and laughs. He was interactive and happy.

And it wasn't only Soren who felt this way. All of us were so much happier. Suddenly we all realized that we didn't tense up every time Soren made a suspicious sound. We didn't have to run over to Soren when we heard him seizing. We didn't have to make hash-marks on the seizure calendar. It like we could all breathe a little easier.

Then he caught a cold and with the cold came the seizures. Still, even though his defenses were down and the seizures returned, there were significantly fewer than prior to the diet.

The bummer was that after the cold, the seizures didn't immediately go away, which is what I was hoping. They did, however, taper down. But the hard thing was that we had that sadness back. He'd have a seizure and our hearts would sink. And we had something wonderful to compare this feeling to because of those 2 weeks.

BUT, we have now had 2 days without seizures. So we're crossing our fingers that this streak will continue and that we can all find that happy place again.

Amy

Keto Update: 1 Month

2010-10-11T12:55:00.000-07:00

We are at the 1 month mark on the Keto Diet and I am happy to say that things are going well! It took a bit of adjustment for everyone. Soren was not accustomed to the new flavors of his Keto Cal vanilla formula beverages. I was not used to having to give him fluids after school (and frankly, he was a little thrown by it as well). Getting temperatures right on the drinks was tricky--not too hot or too cold. Realizing that when I prepare meals in advance and stick them in the fridge, the butter in the meal hardens up so I have to give it some "softening time" before feeding Soren.

But we're adjusting well and the results are really positive. Week 1, Soren had 38 seizures (ugh). Week 2, 19 seizures (hmmmm). Week 3, 17 seizures (is this worth it?). Week 4, 9 seizures! In fact, I didn't see any seizures for 4 days! He had two very quick ones this morning and bounced back from them really fast.

Also, Soren's energy level has increased and he's "chatting" more. Because the meals are so small, he begins insisting on them when it's meal time and wolfs them down. He wakes up bright eyed.

The only hitch we've run into is that he's gaining weight! Despite the heavy fat content, this is NOT supposed to happen because he's in ketosis, which burns the fat. And gaining weight (as long as it's not growth related) can impeded seizure control.

But the dude has a belly now! And, his PT has noticed that he's not standing as well as he was prior to the diet. It's as if his muscles can't handle this new weight gain.

So we met with the dietitian today and I'm going to try and cut 100 calories from his snack. I honestly don't know if this will fly. Soren comes home from school HUNGRY. I mix the Keto Cal with very warm water and Powerade Zero. So now, it will just be warm water and Powerade! Ugh.

But, if it works, good things will most likely come from it. First, the weight loss. Second, he could go even deeper into ketosis. And because of those two, he could get even better seizure control!

Wish us luck on this next "adjustment!"

Amy

Keto Update: Two Weeks

2010-09-27T12:15:00.000-07:00

It's been 2 weeks since we started the diet and, after some rough going, things have leveled out.

The hardest adjustment for me has been fluid intake. Soren still drinks from a bottle. But he doesn't hold the bottle. So I have to hold him and hold the bottle for him. And while this can be a very sweet time for us, the boy is now 7 years old and keeps on growing! However, I stopped growing many years ago so he's beginning to swamp me. Because of this situation, I would give Soren a bottle of milk in the morning and in the evening. Thus, I knew that Soren was getting 16 oz. of fluids into him a day.

This is not a lot of fluid. I know this. I would try now and again to get a bottle into him after school, but this was hit and miss depending on what therapies he had on any given day. But, in starting the diet, Soren's nutritionist feared (rightly so) that Soren was rather dehydrated. So she wanted me to DOUBLE his fluids.

That meant 2 more bottles. That meant 2 more times I would have to find in the day to sit down and hold him while he drank. Now, Soren can do this in 10 minutes or he can be a pill and take 45 minutes. So the thought of doing this made me incredibly anxious. It would be like having a newborn again.

Plus, one of these bottles HAD to be at lunch time. Now, this is all well and good on the weekends when Soren is with me. But on the weekdays when he's at school? How was that going to work? Soren is REALLY picky about who he allows to give him his bottle. I feared I would have to drive up to school every day for lunch for this, which would really cut into my already packed days.

Fortunately for me, Soren goes to a great school where they love him to pieces. I told his teacher our predicament and she said that his aid would gladly give him a bottle at lunch. I breathed a sigh of relief. Could this possibly work?

Well, the first week of the diet was definitely the roughest. After our 2 1/2 days in the hospital, Soren and were both beat. That night, I was trying to get his last bottle into him, and Soren would not drink. I broke down in tears, wanting to give up then and there. But then Aaron held Soren for an hour while Soren slept on him, out cold. When Soren woke up, he was refreshed and ready to drink and did so lickety split.

The next day, when he went back to school, I showed up to see how Soren was doing with the bottle. He was NOT drinking. So I sat down with him and fed him 80% of the bottle. I then handed him back to his aid and Soren drank the rest down for her. Now that we did that "transition," he's doing a great job for her.

So now Soren is a great job at eating the food and, for the most part, drinking his drinks. He's much more alert, which could be from the diet or the added hydration--or both. He is still having daily seizures, but they are fewer. Only 1-3 a day versus 10-20 a day.

We are going to give the diet a full 3 months and assess the situation then, deciding if the benefits are worth the work. We aren't going to mess with his meds in any way so that we will know, as well as we can, if and good or bad stuff is connected to the diet.

But I will continue to keep you posted on the progress or set-backs we encounter.

Amy

Other Advantages from the Diet

2010-09-15T09:36:00.000-07:00

Since the beginning of Soren having seizures at 6 months old, the goal has obviously been to get seizure control. With that control, Soren's development and cognition could hopefully proceed. Not that he would necessarily become a typical kid. But without seizure storms attacking his brain, things would have to at least get better. This is all we've ever wanted. Yet, despite all our efforts, it's been impossible for us to achieve.

From what I have gathered of the kids on the Keto Diet, 1/3 get seizure control, 1/3 get a decrease in seizures, and 1/3 have no improvements and stop the diet.

But my Fellow-Roommate Mom in the hospital had a friend who visited whose daughter has been on the diet for a year now. And while her daughter hasn't gotten any seizure control and has actually had to increase meds, she has had great cognitive gains. This little girl went from not being able to read prior to the diet to being able to read since starting.

This is something I had never heard. Progress with seizures? Wow! Now, don't get me wrong. I want these flippin' seizures to stop! Soren turns 7 next week. A decrease or stopping of seizures would be a pretty sweet birthday present. But if he can start making gains despite the seizures, I will be quite thrilled.

Amy

Keto Diet: Hospital Day 2

2010-09-14T14:07:00.001-07:00

I have been told that Day 2 of the Keto Diet is supposed to very hard. The fat starts hitting the system, which can make the child nauseated. Also, because of the lack of carbs, the blood sugar drops and the child can become lethargic.

Well, Soren's blood sugar is actually higher than they expected but he's been sleeping all day. Now this could be because he was a party-boy last night, chatting until the wee hours. It could also be that he's annoyed with this whole situation and has decided to shut down (a common response for Soren).

Either way, while Day 2 hasn't been horribly hard (thank goodness), it hasn't been easy because Soren is so sleepy he's not eating and has been dribbling out a lot of his fluids. The upshot is a frustrated Mommy.

Soren has had some seizures today, which is to be expected. But they are fewer and less intense than usual.

Now if he would just wake up to eat and drink!

Amy

Keto Diet: Hospital Day 1

2010-09-13T13:55:00.001-07:00

Our first day started super rough. At home, Soren had to start the fast and start drinking a special Keto Shake made up of KetoCal (this vanilla-flavored powder stuff), Applejuice, and Water. Despite telling Soren about it and that he would be drinking a different drink from his usual whole milk, he was clearly not pleased.

Soren is still bottle fed. I popped some of his morning meds in his mouth as usual (he's really good about swallowing these down) and put the bottle nipple in his mouth. Some of the fluid flowed in his mouth and he then chomped his front teeth down on the nipple. This is NEVER a good sign. He always gets a mildly annoyed, devilish look in his eye as if to say, "What the hell is this crap?!"

And then he held it in the back of his mouth. Just waiting. Letting the pills dissolve. Giving me a look like, "I can hold out longer than you, Mom!" Then he began dribbling it out the sides. Remember, I'm supposed to get every drop in the boy. And especially today, because this is all the hydration he's getting!

So I took the nipple out and we continued out stand off. And then Soren did something he's NEVER done to me before. He peed on me getting my lap and his side soaked. Now, granted, this had to do with the angle of his body and that his diaper was gapping. But it seemed like such defiance!

Then he sneezed. Fortunately, it wasn't a spray sneeze. And at the end of his sneeze, he swallowed all that was left in his mouth. That was the BEST thing that could have happened. Suddenly he realized that I wasn't feeding him poison. In fact, the look he gave me told me that he kind of liked it. He then proceeded to drink the rest of the bottle down without incident and I got all his meds in. Whew!

Granted, I then had to bathe him and hose myself off a bit. But we survived.

Since then, all has been running smoothly. Soren has sucked down his past 2 shakes with no problem. We have snuggled and all is forgiven. And we only 3 more shakes to go today!

We are now in Huntington, checked into a very large room we're sharing with another family starting the Keto Diet. This is actually rather nice, since the other boy's Mom knows WAY more than me (she's done the diet before). As usual, I'm learning off other people's experience!

Soren is about to get hooked up to the EEG/Telemetry to monitor his seizures and we will really be on our way!

Amy

Keto Diet Step 3: Calculating and Measuring

2010-09-08T19:52:00.001-07:00

The next step was for me to get trained in the Keto Diet. And the first part of this was buying a scale that measures by the gram. Every morning when I turn this on, I have to calibrate the scale to make sure that it weighting properly.

Next, I needed to make up Ketogenic Diet menus for Soren. Thankfully, I am working with a lovely dietitian at the Epilepsy and Brain Mapping Program in Pasadena who led me to the Ketocalculator site where she had done a number of these for me already and taught me how to do it myself.

And it's kinda fun. You choose a category--protein, fat, carbs--and punch in the what goes in recipe--egg, butter, avocado, lime juice, salsa. Then you put in how many grams of each you think you might need to get the correct ratio.

Soren is going on a 4:1 ratio. Now if I'm understanding this right, the 4 in this is the amount of fat to the 1 which is the amount of protein and the carbs added together. And I would try to describe the next part of the calculations, but frankly it baffles me. Basically I sit there clicking numbers up and down until everything adds up correctly.

Here's a sample menu for Tilapia Avocado

5 grams of lime juice
21 grams of tilapia
18 grams of butter
24 grams of avocado
60 grams of heavy cream (to drink, not to mix in the food)

So the next step is for me to measure this out on the scale. And I must do this EXACTLY. Don't go up to 21.1 grams of tilapia! But this part is kind of fun too (at least right now) which is a surprise since I am the LEAST scientific person I know!

Last, I mash up all that deliciousness and get Soren to eat EVERY BIT!!! As in scrape the bottom of the bowl and get every morsel in you can. And this has to be done at THAT DESIGNATED meal time. If he doesn't eat the whole thing, I can't feed it to him later. The "good" thing is that the meals are so small, Soren will probably wolf it down in seconds. The bad thing is I'm afraid he'll be hungry (though being in ketosis is supposed to curb your appetite).

Next up...Soren goes into the hospital for his controlled fasting into the land of Ketosis.

Keto Diet Step 2: Learning About the Diet

2010-09-08T18:36:00.000-07:00

So with Soren having passed the blood test, I bought the Ketogenic Diet book and started reading up.

The main question on my mind was, "Why does the diet work?"

Simple answer: They don't know.

The longer answer is that fasting has been used since biblical times. I guess Jesus didn't actually heal the boy with epilepsy, he just didn't feed him. "No loaves and fishes for you!"

But seriously folks, fasting has been used for a LONG time. Many years later, the doctors at Johns Hopkins worked on doing it in a controlled fashion. One of the key parts of that is going into ketosis. Now, when you're in ketosis (which is what happens on the Atkins diet), your body THINKS you're fasting and starts feeding on your fat. But on the Atkins diet you're eating WAY less fat, thus you burn your stored fat and lose weight. On the Keto Diet, you're eating a VERY HIGH amount of fat. And for some reason, in some people, this can help control seizures.

Early on, there was only one version of the Ketogenic Diet. But now there are variations. There's a modified Atkins Keto Diet and a Low-glycemic-index Keto Diet. These versions are WAY less restrictive than the real Keto Diet. However, the problem is that if you don't get seizure control using either of these versions, it doesn't mean that you wouldn't get control on the real Keto Diet. However, if you don't succeed on the real Keto Diet, than no other versions of it will work.

So we could have inched into the whole Keto Diet experience, doing either the Atkins or Low-glycemic-index versions. But that seemed silly. So instead, we're jumping right into the deep end and doing the full-on Keto Diet.

Next up, more on actually performing the diet.

Amy

Keto Diet Step 1: Blood Work

2010-09-03T12:43:00.000-07:00

People have been asking how Soren is doing on the Keto Diet and I realized I should do an update. He actually hasn't started the diet yet because there are some steps you have to go through beforehand and the first of these is blood work.

They basically have to check and make sure what Soren's levels are on various things so they have a baseline. Plus, they check if he has any metabolic disorders which would prevent him from being a candidate for the diet.

Now getting blood work sounds easy enough, right? Wrong. The amount of blood for all these tests was just crazy. The lab said they would have to do them in-house so they wouldn't have to draw as much from his little body.

Because we were getting blood work done for both the Keto Diet and to check his med levels, Soren had to be fasting and not had his morning meds. So back in July, Aaron took Soren in to get this done. It went smoothly, Soren was a trooper, blood was drawn.

But that was just the beginning. They also needed a fasting/med-free urine sample. Now, Soren doesn't just pee in a cup like you and me. Instead, we have to put this goofy urine collection condom thing over his penis and wait for him to be inspired. The lab didn't have these things at this location. So the next week, I had to drive to their other lab in Azusa to get this. Oy!

Long story short, they gave me 2 baggies, I tried two mornings, Soren was not in the mood to pee. So then I had to get another from his pediatrician's office (just a short drive to Pasadena). I delivered the pee and figured all was good.

But then I got a call from the lab saying that they didn't draw enough blood for all the tests. We we needed to go, yet again, with Soren food and med free. We arrive only to be told by the lab tech that they don't have the kit for one of the blood draws. What the...?

Well, now that's all been resolved and Soren is signed up to start the Keto Diet on September 13th.

But in August, I started my Keto Diet training, which I will fill you in on in my next entry.

Amy

Keto-Time!

2010-07-14T14:20:00.000-07:00

For the past year (maybe longer) Soren has been having a really hard time with seizures. Currently he has anywhere from 2 tonic seizures to a cluster of 26 seizures a day. Sometimes even a combo of both.

We've been playing with meds. We never wanted Soren on more than 3 meds. Currently he's on 4. I'm weaning him off one so he'll be back at three. Ideally, he'd only be on 2. Well, ideally he'd be on none.

Which leads me to the Ketogenic Diet. The Keto Diet--where you put the body into a state of ketosis as in the Atkins diet--works really well for certain kids with seizures. We almost did it about back in 2005, but then we started Lamictal and Soren had a really good, almost seizure-free year. It was amazing!

So we put off the diet. For 5 years. And we've avoided it because all we've heard from parents is what a HUGE challenge it is. You have to weigh EVERYTHING. You have to get every bit of food into your child. I just wasn't up for it.

But after this year, with the encouragement of our new doctor, we've decided to give it a try. I mean, weighing food may be a pain, but watching Soren seize like this daily is far worse. Plus, since Soren only eats what we give him, the only "hard" part will be the food prep.

So now I'm trying out high-fat, low-carb foods on him. Giving him heaving whipping cream to drink. Adding sour cream to his avocado. Mixing ground bacon into his eggs cooked in butter.

After we figure out foods he likes, I'll learn to weigh them properly. And after I master that, Soren gets checked into the hospital for a 3-day detox off carbs.

If this works, his seizures will decrease! If it really works, he'll be seizure-free. If it works for a while, we will hopefully be able to decrease his meds. Some kids are just on the diet, seizure-free, and completely med-free. That would be amazing! Soren has been on AEDs since he was 6 months old!

But for now, I'm playing with the foods and asking, "Would you like some extra fat with that fat?" and answering, "Why, yes, I would!"

Amy

Update on Senate Bill 1051

2010-06-03T10:08:00.000-07:00

Thanks to the outpouring of support from all of you, the Diastat bill (SB 1051) has passed through the Senate Education and Health Committees.

Unfortunately, this past week, Senate Leadership put the bill in the "suspense" file, placing it on hold due to STRONG UNION OPPOSITION. Both the California Teachers Association and the California Nurses Association oppose this bill. And while I LOVE TEACHERS and NURSES, their unions opposing this bill only hurts our kids with epilepsy.

But, there is still hope because Senate Leadership has the power to free this bill from the Appropriations Committee. And YOU can make the difference!

Please help kids like Soren by taking less than two minutes to call Senate Leadership urging them to free the bill and protect the 63,000 California school children with epilepsy.

Contact Information:
Senator Steinberg (Senate Pro Tem President): (916) 651-4006
Senator Christine Kehoe (Senate Appropriations Committee Chair): (916) 651-4039

Message:
I am calling to support SB 1051.

If they ask for more specifics, say ask them to please release this bill from Appropriations and protect children with epilepsy.

THANK YOU ALL SO MUCH!!!

Amy

Support Senate Bill 1051

2010-05-26T12:26:00.000-07:00

Hello everyone,

Today I have something very important to tell you about.

Senate Bill 1051.

This bill would allow for VOLUNTARY training for non-medical school staff to administer Diastat, a life saving drug, for seizure emergencies.

What is Diastat? Diastat is a safe and easy to use medication, FDA approved for use by non-medical caregivers such as parents, teachers, babysitters and the like.

Why is this bill important? Well, if a child with Epilepsy is in school and begins having non-stop seizures (also known as Status Epilepticus or just Status) Diastat can be administered via rectal syringe to stop the seizures.

However, under the current rules, only a medical professional is allowed to administer this. Now Soren is lucky in that his school has a full time nurse.

But as we know, many school do not have school nurses on site full time. So in the event of a seizure, they have to call 911. For our kids, by the time the ambulance has shown up, the seizures will have gone on WAY too long and done WAY too much damage. Thus, children with severe seizure disorders, like Soren's friend Camille, cannot go to public school because of this "only nurses" rule.

With the passing of this bill, non-medical staff can volunteer to be trained to give this medicine in school.

Now the nurses union wants folks to believe that only nurses have the skills to administer this. But this is totally bogus! I--who have no medical background--have been "trained." Meaning I read the directions, gloved up, got some lube, and put the syringe up Soren's rectum!

And there is no way to give the incorrect amount because the syringe is set to the appropriate dosage for the child. Frankly, it couldn't be easier!

But to pass this bill, I need your help!

The bill is up for a vote in Appropriations tomorrow (5/27), following difficult, but successful votes in Education & Health. Hundreds of letters from supporters helped lend courage to our elected officials in the face of formidable union opposition.

But now YOU can help by taking less than two minutes to call the Senate President (Darrell Steinberg) and the Appropriations committee chair (Senator Kehoe) to log your support. They will ask for your name, your city and your position on the bill.

I just did it and it was super easy. I called to say I wanted to state my support of Senate Bill 1051. They asked for my name, my city, and my position on the bill.

If YOU are in support, PLEASE call TODAY:
- Senator Darrell Steinberg (916-651-4006)
- Senator Christine Kehoe 916-651-4039

This bill does not impose a fiscal burden on the state and without the passage of SB 1051, thousands of children will be placed at risk of brain damage and death.

There is overwhelming support from the medical community (CA Medical Assoc, Assoc of CA Neurologists, UCLA, USC, Stanford, etc), as well as parents and teachers and nurses who work directly with children in the schools.

If we are successful tomorrow, the bill will go to the Senate Floor for a full vote and then hopefully to the State Assembly.

If you want to learn more, Steve Lopez wrote an article (in LA Times today) which discusses the issue and mentions Soren's two good friends Clayton and Camille.

LA Times Article

Please help children like Soren get this life-saving medicine available in the schools!

Thanks!

Amy

Still Struggling

2010-04-22T12:18:00.000-07:00

Despite our best efforts, Soren has been having a rough time this past month with his seizures. We thought we were seeing some progress. We brought back Lamictal and started hearing him laugh again.

But they laughs are gone again. At least for us. I hear that he laughs at school. Hmmmm.

And his seizures, though brief Tonics, are WHOMPERS! I wouldn't be laughing if these things hit me either! They actually elicit a vocal "HUH!" out of him they hit so hard. It's like he got socked in the gut. Which I actually think it might feel like because his stomach muscles contract and his arms and legs stick straight out.

He also seems to know they are coming sometimes. Sometimes he's fussy. Sometimes he "talks" more. There's clearly more awareness. I just wish I knew what he was experiencing.

There are dogs that can sense seizures coming on in people. I wish I had that sense! Or that Aaron and Mo weren't allergic to dogs. Or that I didn't have enough on my hands without adding a dog to the mix. Or that they gave those dogs to people as disabled as Soren. Unfortunately, none of those wishes are going to come true. So we just have to be there for Soren when the seizures hit.

Clearly we need to work on the meds some more. Hopefully we can decrease these seizures. Hopefully we can get that laugh back.

Amy

New Neurologist, New Results

2010-02-27T09:17:00.001-08:00

Soren has been with the same neurologist since he was 9 months old and started having Infantile Spasms. His doctor is one of the top in this field, dealing with many chi;dren who have hard to control seizures. During our time with this doctor, Soren has had many changes in his seizure type and we have juggled medicines trying to get control.

But this wonderful doctor is retiring so Soren got passed to a younger neurologist. I didn't feel she had the experience to deal with Soren's seizures. As much as she tried, she didn't seem to be able to think outside the box. And Soren is WAY outside the regular seizure box.

So we made a change. At Soren's pediatrician's recommendation, we went to a new neurologist. And I have a really good feeling about her. She sat down with me and Soren and went over my 22 page history of him point by point. She marked-up this history, noting med changes. I could see her brain trying to figure out the puzzle that is Soren. She told me drug side-effects that I didn't know about that have been contributing to his recent struggles.

She then laid out a plan for his meds. Decreasing things here, adding things there. And then she wanted to see us back in one month--also noting that I could call her nurse any time if we had troubles.

The great thing is that these changes are having a wonderful effect on Soren. While he's still have a seizure now and then, I haven't seen them everyday like before. He's also much happier. We hadn't seen smiles or heard laughs from Soren for a year. This past month we've gotten both and it's like getting our sunshine back. He's much more alert, eating better, talking more. It's amazing.

It's good to know that even when you have a kid with seizures as tough to control as Soren's, hope is still out there!

Amy

One More Word on One of My Least Favorite Words

2010-02-07T20:44:00.000-08:00

The word "Retarded" and "Retard" continue to be in the news thanks to that charm-boy, right-wing icon Rush Limbaugh.

And what's sad is that Sarah Palin--a supposed "comrade-in-arms" for children with special needs, the woman who asked for the FIRING of Rahm Emanuel for the use of this same word, says that Limbaugh's use of the word "retard" while "demeaning and crude" was also "SATIRE."

First of all, here's what Limbaugh said...

"Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are loony tunes. (Amy note: I guess if you redefine "retarded" as "crazy" it's not a slam against people with learning disabilities. Just people with mental illness. THAT's okay, right?) Limbaugh continues, "And I’m not going to apologize for it, I’m just quoting Emanuel. It’s in the news. I think their big news is he’s out there calling Obama’s number one supporters f’ing retards."

"So now there’s going to be a meeting. There’s going to be a retard summit at the White House. Much like the beer summit between Obama and Gates and that cop in Cambridge."

When asked about this quote, Palin defended Limbaugh saying he was using "Satire" because he was quoting Emanuel's use of the word.

But I think this is a load of crap. Yes, Limbaugh was using the word because Emanuel used it. But Limbaugh's comments were not satirical. They weren't even the asinine, off-the-cuff comments of Emanuel.

Limbaugh's use of the word "Retard" was exactly what Palin is SUPPOSEDLY against.

Limbaugh used it NOT as a poorly chosen adjective to replace "stupid" as Emanuel did. Limbaugh used it to be MEAN. He used it, in my personal interpretation, specifically and purposely calling these liberals retards. His goal was to insult these people by comparing them to people with with developmental disabilities. It was supposedly meant as a, "Ha, ha! Those guys really ARE retarded." Well, you know what, they're not! And just because you supposedly mean it as a joke doesn't make it any more acceptable.

He then called Emanuel's meeting with a group of advocates for the disabled a "retard summit." Okay, what is satirical about that? That was PURPOSEFULLY cruel against advocates of people with special needs. He used it EXACTLY the way Palin ACCUSED Emanuel of using it (which he didn't). He used it like the "N-word."

It was NOT satirical. It was purposeful. Purposefully mean. He tried to couch it, changing the definition to be "kooky" and "loony tunes." But that is NOT what was intended in the use of that word. And Sarah Palin KNOWS it.

Unfortunately, I think that her speaking out against Emanuel originally about this word was really just a convenient political move. Now that she has to speak against a hugely popular conservative, she can't be as FIRED up about the use of that previously heinous word.

And now, more reports of conservatives using this word are coming out. David Carney, a campaign adviser to Rick Perry, was recently quoted using the word. And Sarah was quoted with a similar soft-pedaling admonishment once again merely calling the use of the word "crude and demeaning." Guess she can't stand behind her convictions for her child quite as strongly when it interferes with her political agenda and her own party uses the word. Sad.

But the point is, LOTS of people use this word. Liberals hot-heads like Rahm, conservative hot-heads like Rush, women in the hair salon, children on the playground, and even at one time, me.

But we shouldn't.

And maybe I, as a parent with NO political agenda, can ask that whenever you have the instinct to say that word, stop and think of Soren.

When you want to say, "that's so retarded" or "what a retard" realize that to ME, you are saying that my son, who has been BRANDED by this word, is stupid. That he is dumb. That he is worthless. And, thus, worth less.

Think of this boy. This boy who, sadly, doesn't have the words to defend himself. But he has me. I will speak for him. I will always speak for him.

Even when-and especially when--those who SHOULD won't!

Amy

Sarah, Rahm, and "Retarded"

2010-02-03T08:48:00.000-08:00

I'm sure lots of you have been hearing about Rahm Emanuel using the word "retarded" recently and Sarah Palin's Facebook response. If not, you're hearing about it here.

Let me say upfront that I am not a fan of Sarah Palin. Though I'm not sure that I'm really a fan of Rahm Emanuel either.

But politics aside, Sarah is a mom of a child with special needs, so her perspective in this situation cannot be denied. Having a child with developmental delays myself, I understand Sarah taking offense to Rahm's use of this word. And I actually appreciate her speaking up about this misuse.

However, in all honesty, I'll bet you dollars to doughnuts that prior to the birth of her son, at some time in her adult life, Sarah used the word "retarded" in much the same way. Why am I willing to make such a bold wager? Well, because I used to use this word this way!

I've written about this before but it's buried deep in this blog. So let me state it again. Before Soren was born, "retarded" was part of my vocabulary as an adjective used in place of "stupid" or "dumb." For me, "retarded" had more "Zing!" so to speak. It seemed like more of a rebellious word. And I'm quite the rebel.

Then, after Soren's delays became known, I actually CONTINUED to use it! With some defiance, I must say. I was, like, "You're not taking that word from me just because my son has developmental delays!"

Guess I was the one who really had a lot to learn.

As Soren's delays continued and I became more immersed in the special needs community, I began to accept how inappropriate and hurtful this word is, even when folks say it casually like I used to. For those of us combating the diagnosis of "Mental Retardation," or "MR" as it's commonly referred to, this word has deep resonance. And its misuse is like a knife in the gut.

Most people I know merely use the word the way Rahm did. As an adjective. But because I used to say, "That's so retarded" for years, when I hear others say it now, I just let it slide.

But then there are the times it's used as a noun, as in, "What a retard." Now that one REALLY gets me. It's really hard NOT to say something.

But it's also almost impossible for me TO say something. My fear is making people feel uncomfortable or awkward about my situation. Or making them self-conscious when they speak around me. I was actually in the hair salon today writing this and overheard a woman say it! But I said nothing. I just took the hit and let the wound heal.

And while I agree with Sarah speaking out about this, I disagree with her comparing "Retarded" to the "N-word." Now this is a personal issue, so maybe that's REALLY how she feels. But I don't really think so. I think her comparing "Retarded" to the "N-word" just guaranteed it to stand out more when the press picked up the story.

For me, the two words incomparable. In my life, the "N-word" was always meant as a slur. It always meant as mean and hateful. But "Retarded" has had more of an evolution into its current "inappropriate" status.

I liken "Retarded" to the word "Gay." Now when I was young, lots of people, including me, said, "That's so gay." And it was, obviously, meant as an insult. Well, as the years passed, people began to realize that the gay community takes offense at using this word this way! And rightly so! Thus people in general have stopped using "Gay" in this manner.

So, yes, I am glad that Sarah Palin spoke up about this. Awareness must be raised that the casual use of this word can be very hurtful to people. Maybe this is a step in that direction.

Amy

Disneyland with Soren

2010-02-01T09:36:00.000-08:00

Aaron and I have always loved Disneyland. That love was easy to pass along to Moira. Soren always comes along, but we're not always sure how much he enjoys it. It's bright, it's noisy, it's overwhelming! But yesterday, he really seemed to like it all, staying awake for the majority of our visit.

He's a big fan of the dark rides: Peter Pan, Pirates, Alice, and the Tiki Room. He LOVES the Tiki Room. Always has. Yesterday, he was actually taking his one nap right before we went in. But once the lights dimmed and the birds started talking, Soren peeked his eyes open. And when the music began, his eyes were wide open and he was kicking, talking, and watching. Watching him enjoy it makes it my favorite.

We also did Buzz Lightyear, which we've done before. Usually we go to the special wheelchair transfer area and unload Soren, sitting him on our lap for the ride. But this time, the Cast Member asked if I wanted Soren to stay in his chair. The Buzz ride has ONE car that has a ramp to roll a chair into and a little seat next to it for the other person. And as luck would have it, it came by right when we arrived.

Always eager NOT to lift Soren, I wheeled his chair in and sat beside him. It was SO awesome! Soren was much more comfortable and got a way better view of the ride. This time he was really looking around at all the amazing colors. He was a little annoyed with me helping him fire the blaster, but oh well.

But the BEST thing that happened was on the Haunted Mansion. This has always been one of my favorite rides. I remember riding it over and over again as a teen one time when there were no lines at Disneyland. But I always wanted to see where the "Doom Buggies" went after you hop out onto that conveyor belt/people walk thing. I used to imagine jumping back into it, hoping the Disney folks wouldn't notice (which of course they would and then I would have gotten in big trouble).

Well, because of the kids, I hadn't been on the Haunted Mansion for about 10 years. Moira wasn't ready for it until this year. So we decided to brave it. But we had no idea how it all worked with the wheelchair. I mean, you leave out a different area than were you start in the Doom Buggies.

The first part was completely the same, going down in the room with "no windows and no doors." Then when it was time to load into our Doom Buggy, they slowed the conveyor down a bit so we could get Soren out of his chair. (NOTE: I now know that one of the reasons the Doom Buggies stop during the ride is because of this!) So we rode to the end, where we usually get out. But this time they stopped the ride and told us to stay in our Buggies.

Then my childhood dream came true. They started the ride again and we got to go "behind the scenes" in our Buggies! It was such a simple, silly thing, but it made me so happy! And just so you know, the Buggies just loop around and come back out to pick up people.

And as if that wasn't enough to give me my dork-fix, we got a bonus! To get to ground level and out of the ride, we rode the elevator back up! So we got to see the paintings go from stretched back to normal. It was so cool!

I've gotten quite an education since Soren came into my life. And yesterday it was a fun education, Disneyland-style.

Amy

Hungry Boy

2010-01-12T19:09:00.000-08:00

Here is a lovely photo our friend Sabrina took of Soren. If you live in L.A., she'll take your photos! Check out her website...

Sabrina Photography

On to Soren...it's been a little be of a rough start of the new year for Soren. During Christmas break, he caught a cold that led to an ear infection. So he had a little delay returning to school. But now he's back to his chatty, hungry self.

Which leads me to the funny thing that happened yesterday. I send Soren's lunch with him to school every day. Monday morning a prepared avocado and salmon and put it in the fridge. When the bus came, I put the container in his lunchbox and sent him off.

When Soren came home, I had to give him a snack to get his antibiotic in. Before I got the food ready, every time I walked by Soren, he opened his mouth hoping for food. I thought this was odd since he had such a big lunch. So I fed him his snack, which he devoured.

That evening, I was preparing Soren's dinner and looked in the fridge for some squash I'd cooked. It was just a tiny bit of squash that I was going to mix up with some egg. But, for the life of me, I couldn't find it. But I DID find the avocado and salmon that I'd made that morning.

Poor little boy. I sent him to school with about 5 bites of squash for lunch. No wonder he was opening his mouth like a baby bird after school. He was starving!

Needless to say, he wolfed down his dinner really fast. But I felt so bad. Soren doesn't have any words to tell me he's hungry, but was giving me the only sign he knew--an open mouth--to clue me in. Good thing I had to give him his antibiotic!

Amy

UPDATE on EEG

2009-12-03T14:26:00.001-08:00

Well, Soren did his job and had 2 seizures this morning. I did my job and pushed the button when these happened so that it made a little mark on the EEG and he was clearly recorded on the video. The doctors then did their jobs and looked everything and gave us the info.

Soren IS NOT having Juvenile Spasms. He is having Tonic Seizures. This is actually good news because Spasms are a pain in the butt to control. Plus, as I mentioned earlier, they wreak havoc on your vision.

So we are dropping out his Lamictal and adding Topomax. And he will continue his Depakote and Clobazam. We'll see if this combination works better than the other to control the Tonics.

But we are now safely home. Soren still has some leftover junk in his hair despite my giving him a hearty scrub. It was a stressful 24 hours, but we did well!

Amy

EEG Telemetry at UCLA

2009-12-02T08:21:00.000-08:00

Today Soren is going in for a routine EEG Telemetry test at UCLA Medical Center. The test should be about 24 hours. I believe I've written about them before. It's a prolonged EEG with the combination of a video camera filming Soren. The EEG is to measure his brain's seizure activity. The video is to monitor what happens to Soren visibly on the "outside" when the seizures occur.

So our goal today through tomorrow is for Soren to HAVE seizures! As I noted in a previous post, Soren is apparently having Juvenile (Epileptic) Spasms again. These were previously called Infantile Spasms, but because Soren is now 6, they have a new name. Soren now has a new neurologist who wants to confirm that these are, in fact, the kind of seizures he is having. Spasms have a distinct pattern called Hypsarrythmia.

We believe these seizure returned over a year ago. Despite trying new combinations of meds, we still don't have full control. However, he's only having 3 a day. Only, you say? Well, considering he used to have hundreds of these a day when he was a baby, 3 is a vast improvement.

And the Spasms knock him out less than the Tonic-Clonics he used to have. He tends to have a quick one, be fine for about 10 minutes (resuming his activity from before the seizure) but then he conks out (is post-ictal) after that 10 minutes. This makes it very tricky when the seizure comes right before I feed him. I'll get the meal started, and then he'll pass out.

However, Spasms REALLY do a number on your vision. Soren's vision was actually improving nicely a little over a year ago, but then the Spasms returned and his visual gains were lost.

So, we want to confirm that this is what he's having. If they are, we will try some different meds (unfortunately, these are meds we tried years before that did not work at that time). If they are NOT, we will also try different meds, since they ones he's on aren't really doing the trick.

To prepare for this test, I can't give Soren any solid food today until he's hooked up to the EEG. They'll have to sedate him since he's such a wiggle-worm and you have to get the leads in the right places for the test to be accurate. So I got Soren's meds in with clear liquid (juice) today. Not his favorite. My boy likes his milk.

We won't check in to UCLA until 11:00. We'll probably be in the room by 1:00. Then we need to get him knocked out and hooked up. After he wakes up, I can feed him. I have no idea what Soren's mood will be going without food for this long. The only time he really doesn't eat is when he's ill. Should be interesting.

Then we hang out in our hospital room all day through tomorrow. I'm not supposed to leave the room because I'm officially the camera woman for this shoot. When the seizures hit, I have to make sure they get that visual!

So, it's against my usual way of thinking, but today and tomorrow I'm actually hoping for seizures while he's hooked up and on camera. The sooner he has them, the sooner we get to go home!

Amy

Soren Update

2009-11-16T14:33:00.000-08:00

Almost a year ago, Soren started having Epileptic Spasms again. We have struggled through this year, playing with meds and diet to try and get control. Unfortunately, we simply haven't. While these seizures are fewer and far between than previous seizures, these are really hard on Soren's vision. And any time he has seizures, progress made is erased. I actually realized that I haven't heard Soren laugh in a long, long time. I fear that either the seizures or the meds or the combination is wiping these out.

Not hearing your child laugh is really hard. I mean, I know he's a content boy, but when he used to laugh, it really drove home that he was happy. That he found things amusing.

So we will continue on our quest to get seizure control. Soren's neurologist is retiring, so maybe fresh eyes will think of something new that will help our boy. And hopefully his infectious laugh will return.

Amy

Happy 6th Birthday, Soren!

2009-09-22T20:43:00.001-07:00

My handsome boy, Soren, celebrated his 6th birthday today!!!

Hooray!

I sent him off to school with Birthday Brownies, which were greatly enjoyed (especially by Soren, who loves the chocolate).

For his birthday, we got Soren a cool new piece of equipment called a Straddle Sitter. It is so AWESOME! Soren can sit up well enough, neck and trunk-wise. He just needs that balance in the back. And this totally does it for him. He can sit in this for over an hour. Of course, at therapy, he was being a pill and scooting his butt forward so I had to keep adjusting him. But normally, I don't have to do anything. He'll happily sit while we watch T.V., cook, or whatever.

In the afternoon, Soren had music therapy. Here are some pictures...

HAPPY BIRTHDAY, SOREN!!!

Soren's Amazing School: College View

2009-09-07T16:32:00.000-07:00

The Glendale schools were supposed to start last Monday, August 31st. However, due to the fires, the schools remained closed until September 4th. Those were a looooong 3 days!

But my big boy returned to school on Thursday, happy and rarin' to go!

At the end of the year, Aaron and another dad started working on the website for College View School. It is now up and running and looks really great.

Check it out at...

College View School

Go to the Videos section and you will see an amazing video made at Soren's school last year, showing "A Day in the Life" at College View. It's really amazing.

Amy

Safety Bed

2009-08-10T14:35:00.001-07:00

Soren didn't used to move too much in bed. For safety's sake, we put a baby gate on his bed, but we never really felt he needed it. We'd lay him down on his back and he would stay there. Sometimes he would turn to his side, which would lead to him getting on his belly, but that was about it.

Until about a month ago. Now that boy is wiggling and scooting. He gets on his belly, often trapping his arm. And how he's insisting on pushing on the gate.

Not being a small child, as the gate was intended to protect, when Soren puts his weight against this gate, it moves. He's gotten himself wedged between the mattress and the gate. And he's fallen out of bed. Twice.

He did this last night and so now I'm looking into safety beds for kids with special needs. As usual, this will be a BIG ticket item, so we are working on the insurance procedures.

But if any of you parents of special needs kiddos has experience--good or bad---with any of these beds, I would love to hear it. Since it is a pricey piece of equipment, we hope to get one that will last a LONG time! Any advice would be greatly appreciated!

Thanks!

Amy

New Class, New Teacher

2009-07-09T19:32:00.001-07:00

Soren's school has a summer session, and since Soren is 5 going on 6, he was moved up to the next class. This made me a little nervous, since he has been with the same teacher since he was 3. She is awesome and challenging and has been so great for Soren.

But it seems that Soren is adjusting. It took a couple days. I got some notes back saying that Soren was doing some heavy napping. This is his way in a new situation until he feels it out. It's a defense mechanism.

He started in the new class on June 29th. And now, on July 9th, he seems to have adjusted. He went from being attentive 75% to 80% to 90%. That's pretty darn good for our boy!

And he's really seeming to respond to music. His previous teacher noted this when a Marimba band came to perform at the school. Now his current teacher is noting that Soren is responding to music as well. We've been doing some music therapy for the past 4 months or so, so maybe this is waking up some senses.

Anyhow, in the end, while change is scary and sometimes hard, it's also hopefully for the best and helps move things forward.

That's what I'm hoping for my mysteriously musical little boy.

Amy

Quick Update

2009-06-28T21:38:00.000-07:00

Ah, once again I have been neglect in my blogging duties. I apologize. I've been very busy. Here's a quick update...

1.) Soren is now off the anti-virals after we decided they were not the appropriate mode of treatment.
2.) While on the meds, I did get into the habit of feeding Soren breakfast and a snack, which he chowed down with great abandon. Turns out the poor boy was hungry! In the past month, he's gained almost 2 pounds due to this calorie increase.
3.) I took Soren off avocado. But he ended up having a few seizures anyways, so I brought it back.
4.) I discovered that Trader Joe's Edamame and Egglant Hummus are delicious. Soren thinks so too!
5.) Soren's seizures/spasms have been few and far between.

Soren's still staying off cow's milk and cheese at the moment since we actually think this may have helped decrease the seizures a bit. Actual allergy testing may be in Soren's future.

That's it!

Amy

Making New Habits

2009-05-28T16:39:00.000-07:00

We all know it's not easy to make new habits and very hard to break old ones. Which is the struggle I am facing now.

Soren is now on an anti-viral medicine. It is a medicine that is to be given three times a day. I give Soren all his meds in the am and pm. And I don't want to bother his school with the middle dose if it ends up not being permanent.

So I'm doing it. Or I'm trying. But this is very much not in my routine, so I'm struggling.

There are various components to my struggle.

1.) The lunch meds...I do well on the weekends, when I feed him lunch. But then when he's back at school, I forget to give him his afternoon dose when he gets home from school. Ugh.

2.) I'm also supposed to be giving him a multi-vitamin, something I've been incredibly lax about doing. I think I gave it to him one day and then have forgotten since.

3.) Soren is currently on 5 meds (3 anti-seizure, 1 antibiotic, 1 anti-viral) In the morning, I used to just plop the pills in his mouth, give him his bottle, and have him swallow them down. Now there are so many, he's choking! And it's not a big breakfast kinda guy.

4.) Due to the diet changes, I need to make sure that Soren is getting in enough calories, so I need to add more food.

So this is the habit I'm trying to form.

1.) Feed Soren a little breakfast (emphasis on little) just to get the pills down. Some banana and Rice Krispies, maybe some Cream of Wheat (if it's allowed). Just something that will do better and no choking.

2.) Feed Soren a little snack after school. Usually he gets off the bus and I just let him chill in his vision box until dinner. But today, having forgotten his lunch meds at Feeding Therapy, I fed him a snack. Now, mind you, he had CHOWED DOWN at Feeding Therapy.

Well, clearly the boy was hungry, because he then wolfed down the snack, pills and all.

Wish me luck. I am a creature of mainly bad habits but I'm hoping these good ones will stick.

Amy

Okay, I'm Back!

2009-05-18T12:03:00.000-07:00

Sorry I have fallen off posting yet again! Life has been crazy-busy work work (yay!) and illness (boo!). Soren had a stomach bug right after Spring Break, then a week later he had a fever, then that Friday, his fever returned and wouldn't break. Finally I got him into the doctor and discovered that it was an ear infection. Got Soren on the mend, and then Mo got a cold!

The good news through all of that for Soren is that he had very few seizures---something that is very rare in that situation. We are now seeing a neuro-immunologist who has recommended I take Soren off dairy and put him on anti-virals. I did the dairy first and the lack of seizures continues (last one we saw was Mother's Day). I started the anti-virals today, so we'll see if there is any change.

Next I need to remove avocado, which is going to be hard. 1.) Because Soren loves it and 2.) Because I have very little cooking imagination. But we have a great cookbook on delicious and healthy foods for babies. I will delve into it and see if I can widen Soren's repertoire.

I promise to keep you updated on any changes!

Amy

Depakote

2009-04-01T05:39:00.000-07:00

We started Soren on Depakote a few weeks back and are getting some really good results. While we weren't thrilled with the thought of having Soren on 3 anti-epileptic drugs again, with the looping Juvenile Spasm Clusters, it was clearly necessary.

Our original plan was to keep him on as low a dose as possible. The theraputic dose for Soren is 2 pills twice a day. There's no way to split these pills, so I started him on one full pill. It immediately cut down the clusters, just giving him one spasm now and again. But within 5 days, the clusters were back, so we brought in the morning dose.

Again, things got better. We went longer without clusters this time. But then they kicked back in, so we went up to a full dose in the evening. That was last Thursday and the clusters are gone again. I've seen one or two spasms, but nothing really bad. I'm hoping that once this is fully in his blood, it might do the trick. If not, I'll go up that last bit.

I'm pleased that this has knocked down the clusters. Hopefully we have regained some seizure control!

Amy

Seizure Update

2009-03-07T09:26:00.000-08:00

So as I wrote previously, on December 3rd, Soren started having what I thought were Absence seizures. They started the night I started Soren's Zonegran wean, so I knew that the two were not related and continued to wean him.

As the wean progressed, the "Absence" seizures grew in length and frequency. Finally, the weekend of February 21st, Soren started having these seizures in clusters. So I contacted his doctor and got the okay to increase Soren's Lamictal dosage.

However, his doctor was concerned and fit Soren into his very busy schedule to check him out. I knew that the chances of Soren having a cluster in front of Dr. Shields were slim, so I video-taped him seizing and burned it onto a DVD. I'm so glad I did, because sure enough, Soren seized in the waiting room, but was happy as a clam in the exam room.

Turns out these are not Absence at all. They are Epileptic or Juvenile Spasms. Now Soren used to have Infantile Spasms, but since he is no longer an infant, they have a new name. Dr. Shields was clearly bummed about this development because we have been on all the "go to" drugs for Spasms. We discussed bringing him back on Zonegran, but I was confident that it would do nothing.

Instead, we have increased his Clobazam by have a pill in the evening. In a couple days we will add another half to the morning dose. If that doesn't work, we are going to start a drug Soren's never tried called Depakote. I know from other parents of kids with Spasms that the Clobazam/Depakote combination is a good one.

I'm hoping the Clobazam increase does the trick, but we'll see what happens. The good thing is he recovers from these just fine--bouncing right back as if nothing happened.

Amy

Little Loops

2009-03-01T21:21:00.001-08:00

Hey all,

I know, it has been FOREVER!!! I apologize, but life is busy.

The "little loops" I am speaking of are the Absence loops that Soren has been getting into. They started last weekend (Feb. 20). I noticed it when I was feeding Soren. He had an Absence and recovered. Then he had another. And another. This went on for a solid 3 or 4 minutes. I was actually fearing I was going to have to give him Diastat.

But then, as oddly as they started, they stopped. He was fine, alert, and finished eating as if nothing had happened. He did the same thing on our drive home (we were in Scottsdale). But it passed and all was well.

So I sent an email to Soren's neurologist on Monday and got the okay on Friday to increase his Lamictal by 25 mgs on the evening dose. So we'll see if that has any effect. I'm a little doubtful because the Lamictal doesn't appear to do much, but I could be wrong. I hope I am.

I'll keep you in the loop on the loops.

Amy

Soren in the Kid Walk

2009-02-11T20:34:00.000-08:00

Okay, I apologize to those of you who are my Facebook friends and also Soren's blog checkers. I am repeating myself. But this is a new piece of equipment we are considering getting for Soren.

It's called the Kid Walk by Prime Engineering. I shot some video, but it's too big to post here. So here are the pictures. Soren is seating on a bicycle-type seat and then strapped in around his waist and chest.

We took Soren's socks off because he loves to explore the world with his feet. We then wheeled him on the carpet because of the texture. Soren loves to kick, so he pushed against the carpet, propelling himself backwards.

This is super cool because Soren gets to move himself through space. Usually Soren hangs out on the floor and kicks, but he doesn't really go anywhere. He can roll from side to side and kick so much he moves across the floor, but otherwise, not a lot of movement. And in any other piece of equipment, it's us rolling him.

In this, Soren gets to do his own thing and he was really happy doing it.

Amy

One Week To Go!

2009-02-01T19:12:00.000-08:00

A week from today, Soren will have his last dose of Zonegran. I am really looking forward to this.

For one, I keep almost blanking on his morning dose because now it's down to 1 pill, only in the morning. Since it's so irregular, I'm beginning to forget.

Second, I'm thinking (and hoping) that the Absence seizures are subsiding. I saw 2 very brief ones today. I mean REALLY short--if I'd a blinked, I'd a missed 'em. And we spent the ENTIRE day together. I even checked in with Aaron to see if he'd seen something I hadn't.

So I'm going to get Soren off this drug and give him a little time to get it completely out of his system. If he's still having some Absence, I'll check on upping his dose of Clobazam. He is clearly growing, so an increase might be needed.

But if they subside, I'll do a happy dance and call myself "Lucky Mama."

Amy

Withdrawal

2009-01-23T08:21:00.000-08:00

Soren has continued to have the Absence/Tonic seizures. And while he still bounced back super fast as if nothing happened, they have also gotten stronger and are lasting longer.

I'm hoping against hope that this is all due to the withdrawal of Zonegran. Soren is now on 25 mgs morning and night. The night dose is being dropped on Sunday. And the last morning dose will be eliminated 2 weeks after that. In my fantasy world, once all of this drug is out of his system, the seizures will dissipate.

He has been extra chipper yesterday and this morning. Yesterday after school he was talking and talking. They had done a film shoot at school, so I wonder if he was trying to tell me about how exciting it was. Then at Mo's gymnastics, he started laughing so hard, he had Mo's class busting up as well.

Then this morning he woke with a smile. After he drank his milk he snuggled into me and listened to Aaron, Mo, and I talking about our plans. He smiled even bigger whenever Aaron or Mo were talking and buried his head even closer in to me. He does love his family.

So maybe, just maybe, his body is adjusting to the withdrawal and he's feeling better.

At least that's what I'm going to think it is!

Amy

New Year Update

2009-01-06T20:54:00.001-08:00

Happy New Year to All!

Well, our New Year's Day was way less stressful than last year. As you may recall (I know I do), January 1 of 2008, Soren had looping tonic-clonics that caused us to give him not one, but two doses of Diastat.

Amazing what can change in a year. Soren now no longer has tonic-clonics and hasn't needed Diastat in over 6 months!

He is continuing to have the Absence seizures, some now involving his body tensing up. Sadly, even Moira now knows how to identify such unusual behavior. Soren has been doing this since early December, but I was the only one who really caught them. But as the tensing has been added in, they are far more obvious. This weekend, Moira saw him do this while I was out of the room. She came to me and said that Soren did something weird. But it wasn't a seizure. She described it and I told her that, in fact, it was a seizure.

I'm hoping that the more pronounced version of these seizures is a result of the weaning of the Zonegran and that they will disappear once it is fully out of his system. We'll see. If not, I still don't think the Zonegran was helping anything, since I saw one of these while he was still on the stuff. We'll bring it up with Dr. Shields at our next visit if they are still happening.

But all in all, 2009 is starting out much better for our boy. He's happy and responsive. The way he reacts when Aaron walks into the house after being at work is so wonderful. Last night he was smiling so big he practically wiggled and kicked his way off my lap. He knows his Daddy!
EALTHY
I wish you all a happy and HEALTHY 2009!

Amy

6 Month Mark!

2008-12-27T07:43:00.000-08:00

Soren has officially been seizure-free of Tonic-Clonic seizures for 6 months! The fact that this milestone fell right around Christmas was great and the best gift we could ever ask for.

Christmas Day with Soren was really fun. Though he really doesn't seem to get the whole present thing, he loves when we are all together. He is full of smiles and wiggles. He got lots of vibrating toys this year which he's found interesting--lots of eyebrow raises. He also got bongo drums from us and drumming music that we hope he grows to enjoy. And then he had some good snuggle time with Aaron, a present both of them like.

So here's to Soren going into the New Year tonic-clonic seizure free!

Amy

Absence

2008-12-23T20:59:00.001-08:00

This is not about my absence in posting. This is about Absence (pronounced in the French "Ab-sance") seizures.

The old-fashioned term for an Absence seizure is Petit Mal (as opposed to Grand Mal).

However, for me, an Absence seizure is so petit, comparing to grand is, well, not comparable.

In an Absence seizure, the person stares off into space for any number of seconds and then returns to the scene as if nothing happened. I originally witnessed this in a neurologist's office when I was speaking with a man about Beatles music. Suddenly he stopped, paused, stared into space for a few seconds, and then came back, continuing the conversation as if nothing had happened.

Soren has been having Absence seizures recently. Now he has had these before. But compared to his Infantile Spasms or Tonic-Clonics (Grand Mal), Absence were nothing to write home about. They actually mainly happened when I was weaning him off of Zonegran the fist time.

Now I am weaning him off again. And he is having them again. Now, I would love to blame the Absence on the wean. However, I noticed the first Absence the first night of his wean. Which means it was before any weaning actually took effect. (in other words, plenty of the drug was in his body)

But since then, he's had a number of Absence seizures. They are quick and relatively painless. I mean, they are a bummer to see and freak us out. But he comes back within 2 seconds and it's as if nothing has happened.

I am hoping that, while the initial Absence were not "drug-weaning" related, that the subsequent ones will subside once the wean is finished.

We'll see. He's still a perky, happy boy who hasn't had any tonic-clonics since June (knock wood).

But I'll keep you updated.

Amy

Long Time!

2008-12-12T08:43:00.000-08:00

Sorry for my lapse again in posting. I was doing a big, time-consuming job and fell off my blogging duties.

Soren had a great, seizure-free Thanksgiving. Now that's something to be thankful for!

Since I last wrote, Soren had a neurologist appointment. Soren has remained tonic-clonic seizure-free (to the best of our knowledge) since starting the Clobazam on June 21st. So Dr. Shields suggested that we remove one of the other drugs (Zonegran or Lamictal). Aaron and I were a little nervous about this, because why mess with success. But we decided to start weaning Zonegran, taking it really slow. So instead of dropping out one pill a week, we're dropping it out every 2 weeks. If all goes well, he'll be off Zonegran in 11 weeks.

Meanwhile, Soren toughed his way through another cold. This time he lost his voice and had a nasty cough. But he's the funniest sick kid. I kept hearing him making his sad, hoarse sound as I was working. But whenever I looked at him, he was smiling and the sound was him trying to laugh.

He's doing well with his new intensive Physical Therapy, though he hates working so hard (who doesn't?). And we had an assessment for Music Therapy which was really cool. The therapist was trying to get Soren to play peek-a-boo, which Soren has absolutely no interest in. But then he heard a piano in the next room and perked up. We went over to the piano in our room and started playing, my hands over Soren's hands. He loved it! Some smiles and giggles. Very cool.

That's it. I hope to update sooner next time!

Amy

Epilepsy Brainstorm Summit

2008-11-18T21:15:00.000-08:00

Last Saturday, I (Aaron) attended the Epilepsy Brainstorm Summit organized by the

Epilepsy Foundation of Greater Los Angeles

In spite of major technical issues and speakers having to sub for other speakers because of the fires, it was an excellent conference. I wanted to share some highlights with you:

-MOST IMPORTANT! There was a detailed presentation warning about the dangers of switching between brand and generics AEDs. In a nutshell, the drug's effect on the patient will differ from brand to generic and from generic to generic depending on the individual manufacturer of the generic. Pay attention to exactly what your pharmacy gives you. Talk to your doctor. This could be the difference between seizure control and not. The Epilepsy Foundation actually has an official statement explaining how epilepsy reacts to drugs differently than other diseases. This form can be sent to insurances and pharmacies expressing the necessity to keep AEDs consistent or to have them JUST DISPENSE BRAND, NOT GENERIC!

-School nurses can train unlicensed staff (teachers, aides, etc.) to administer Diastat. The California Dept. of Education has ruled this. So don't take guff during IEPs. They handed out paperwork to back this up.

-As many folks know, seizures take a tremendous toll not only on the brain, but on the body as a whole, in particular the lungs and heart. Effects include irregular heartbeats and asphyxia. Doctors have known for awhile that Omega 3 is good for the heart. Now there is a study underway to look at Omega 3's effect on the hearts of people with epilepsy. Hopefully it will show that the Omega 3 strengthens the heart cells. Meanwhile Soren is going to be switched to Omega 3 eggs. It can't hurt and hopefully will help.

-Get a special needs trust for your kid. Put your house in a trust to avoid probate. We have the name of a couple of lawyers who handle this.

All four epilepsy centers in LA (UCLA, USC, Huntington, and CHLA) have various studies and projects underway. Some very bright minds are working on cures. Let's continue to hope.

These are just a few tidbits from the day. I would encourage everyone to attend next year. It really is worth it.

On the home front, Amy and are looking into new ways to bathe Soren. He is quite long and getting quite heavy so bending over the bathtub is getting harder. We are looking for a bathing system. (Cause we need more medical equipment in our house.) If anyone has any suggestions or experiences, good or bad, please tell us. We will keep you informed of our progress.

Aaron

Sign the Epilepsy Awareness Petition!

2008-11-11T10:49:00.000-08:00

As all of you know, our son Soren suffers from a debilitating form of Epilepsy. One of the tough things about Epilepsy is that people in the general public know so little about it. It is a disease that many either never think about or think is easily controlled by medication.

Sadly, only 70% of those with Epilepsy have seizure control. That leaves 30% suffering from seizures and the after effects of those seizures. 30% searching for the right medication and dealing with the side effects of those meds.

It is a disease with a terrible stigma. It is a disease that can be completely debilitating.

We need to raise awareness of Epilepsy. It doesn’t get the press that many diseases do. But it’s time to change that. You can help. And all it will cost you is a little time. November is Epilepsy Awareness Month and The Epilepsy Foundation needs your help! All I’m asking is that you go to

Epilepsy Petition

and sign!

The Epilepsy Foundation’s goal is to collect 100,000 signatures by December 31, 2008 to present to our elected leaders. That would definitely send a message!

Collecting signatures is a great way to raise epilepsy awareness. The more we talk about Epilepsy, the more we educate the public. So come on! This isn't going to happen by itself! We need to make it happen! Sign and help make a difference!

Sign for Soren!

Thursdays

2008-11-06T16:54:00.001-08:00

Recently Thursdays are a strangely contemplative for me. At least for about 10 minutes. On Thursdays I pick Soren up early from school to take him to Feeding Therapy. After we get home, we walk to school to pick up Moira. This is where I get contemplative.

Soren turned 5 this year. The year of kindergarten. If Soren was a typical kid, he would be going to kindergarten at Moira's school. Lots of my fellow moms have daughters Soren's age that are now attending kindergarten in these classes. I've seen them grow up through the years, but never really compared them to Soren.

But now when Soren and I go to pick up Moira, I see these lovely girls running about. I see that they look at Soren slightly confused. And I think of how it should have been. When Soren and I came to pick up Moira, those girls should have been delighted to see their friend Soren. I'm sure some of them would already have crushes on him because he's quite a handsome fellow. He might play with them happily. Or he might be shy, not wanting to hang around with the girls. Or he might have his own group of buddies to run around and be boyish with.

So I get a little sad. I think of what could have--should have--been. Then Moira shows up, we head home, and I forget about it all. Mostly. Until the next Thursday.

Amy

Peter Pan

2008-10-31T10:39:00.000-07:00

Happy Halloween! Here's our very own "boy who would never grow up." Soren was off to school today in his costume where they will have a costume parade. Trying to get a good picture of this wiggling boy is like trying to catch Tinkerbell in a bottle.

Amy

BUS-TED

2008-10-14T14:54:00.000-07:00

We have had many bus drivers since Soren started riding the bus two years ago. Our first was our best. His name is Phil and he was a seasoned driver. He showed up on time, he was friendly, and he really liked Soren. He liked him so much he stuck with Soren's route through that first summer even though he could have been moved to an easier one.

But the last September, Phil was moved to another route. Still he checks on Soren every time he's at the school. They are buds. So we got a new driver. Actually we probably had a number of them until we got Ebony. Ebony was sweet. She loved to hear Soren's laugh when she drove, which for some reason he did often when he was with her. She watched as our ramp was being built, anxious to see it finished. Loading Soren up was much more difficult before the ramp. She was also looking forward to the red curb because people were parking into my driveway space making it really hard for Ebony to get the bus in. But just as the ramp was finished and the curb was being painted, Ebony moved back to Ohio due to the economics of L.A.

Next we got Mr. Grouchy. Now I don't know Mr. Grouchy's name because he never told me. He was clearly bitter about being a bus driver and let it show. I could barely get a hello from him and I'm a friendly gal. When he returned to pick Soren up after Spring Break, I asked if he had a nice vacation. He grumbled at me quite angrily that he didn't have a break--he had to work--as if this was my fault.

Mr. Grouchy trained a number of people to try and take over the route. First there was Mr. Dimbulb. Mr. Dimbulb had a tendency to trip over the bus lift as he was backing Soren onto it. Often he couldn't work the lift because he had trouble maneuvering the buttons while using his reading glasses.

The first day Mr. Dimbulb was on his own, without Mr. Grouchy, he showed up 15 minutes early. He was lucky I was ready with Soren because, had it been bath day, I wouldn't have been. I told him he was REALLY early. I tried to tell him that, while this was fine, he had to tell me BEFORE he showed up early. He acted like he couldn't understand my English. He then tried to tell me that this time worked better for him--that he was changing the schedule. As he left, I really questioned sending Soren off on the bus with him. I called the bus dispatch to tell them about my interaction, asking if they could find someone who spoke Spanish to make it clear that he needs to tell me if he's changing the schedule. The folks there told me 1) That he's not allowed to change the schedule and 2) He speaks perfectly good English. He couldn't have gotten the job without that. So he was totally hosing me pretending he couldn't understand or talk to me!

That afternoon he was LATE. Really, really, really late. So late I was freaking out fearing that I had made the worst mistake of my life letting him take Soren that morning. I called dispatch to see what was happening. Turns out the bus lift broke down and then had to get him a new bus with one that worked (would have been nice if they called). Hearing this I was pretty confident that the lift was just fine. I had seen Mr. Dimbulb fail to work that lift so many times I figured he just thought he broke it. He finally showed up with Soren, safe and sound.

The next morning Mr. Grouchy was back driving the bus. I asked what happened to Mr. Dimbulb. Mr. Grouchy said he was reassigned. Yeah, right.

Next we had a young gal who was nice enough and showed up on time more or less. Whenever Mr. Grouchy had to substitute for her, I got the feeling he didn't like her. She was gone when summer school began and Mr. Grouchy became our driver for the summer. That was a long, grouchy summer.

This fall, a nice guy--let's call him Mr. Nice Guy--showed up to take over Soren's route in a big bus. The first day he was late. But every day after that he showed up on time and dropped Soren off by 3:00. He was a seasoned pro, he had a good sense of humor, and he liked Soren. I was really happy with this change.

But good things just don't last in the bus driving world. Last week Mr. Nice Guy was training another new gal to take over Soren's route. She drives a small bus. She's also very nice. But, being new, she is doing everything VERY SLOWLY. She's not on time with pick-up or drop-off. Once she gets Soren on the bus it takes forever for him to get his chair tied down. And when she drops him off, we're in the house a good 5 minutes before she finally leaves.

The glorious part about this new bus driver happened yesterday. As I mentioned in my previous post, we had 5 feet of our curb painted red so that nobody would park there. This way the bus would have room to pull in and load up Soren. Well, yesterday some joker dropping off his kid at Moira's school decided to park not only in the red all the way to the edge. I thought of going out and explaining the situation, asking him to kindly move his car. But I just wasn't in the mood to get yelled at or had eyes rolled at me.

Well, while he was gone, the bus pulled up to load up Soren. The way she had to pull up totally blocked this car from getting out. I took Soren, the New Gal got him on the bus, and then the guy returned to his car.

And I just sat at my window and watched. And smiled. The clock was ticking. I don't know what the New Gal was doing. She had to be tying Soren's chair down with ropes and chains and belts. That bus was parked there for a good 5 to 7 minutes. And that guy in the car was trapped. It was so satisfying. He had nobody to blame but himself. His eagerness to do something quickly, my red-painted curb be damned, only cost him a bucket of time. I was never so happy to have a driver move so slowly.

The lack of motion was poetry in motion.

Amy

Eye Sight Update

2008-10-09T12:47:00.000-07:00

I took Soren to his neuro-ophthalmologist today and we got a really good report. Dr. Borchert was really impressed with the progress that Soren, overall, is making. He noted that he like a different kid compared to 6 months ago. Much more alert and not fighting him. He was also impressed that Soren actually took interest in watching TV, something that has developed quite recently.

On the eye front, I told Dr. Borchert that we've noticed Soren looking at us from a distance more. However when we bring him close, he loses interest. We thought he might need glasses for this. But after checking Soren, Dr. Borchert said that it doesn't seem that Soren needs glasses. Instead, he thinks that Soren's cortical visual impairment is causing the problem.

In basic terms, we all have blind spots in our vision. Due to Soren's seizures (and possibly one of his previous meds), he has more blind spots than usual. So, from afar, he might be able to see things better because he can see through the holes. But up close, things may get blocked.

The good news is, these holes can fix themselves as Soren continues not to seize and things start working better in his brain.

The bad news is, we think Soren had one of his night/waking seizures this morning. Aaron heard him making noise and just thought he was talking in his sleep. But when we went to get him up, he had that same old stiffness that's been gone for over 3 months. Now, his PT sessions have been extra rough and I know they've been stretching him really hard. But putting the noise Aaron heard and the pain together seems to point to more seizures. And while this is a bummer, at least he didn't continue them into the day. So we're going to watch this and see about increasing his dose of Clobazam if they continue.

Amy

Amy and the ADA

2008-10-07T15:30:00.001-07:00

I've been meaning to write about this for a while, but have always ended up writing about something else. I never thought I would be making use of the Americans with Disabilities Act, but use it I have and with good turn out.

We live close enough to walk to Moira's school. The trouble was, when walking with Soren, it was tricky to get across the street. Where the crosswalk is, there was a very high curb. High for the kids walking. Even a little high for my short little legs. So when I walked Mo to school with Soren, we would have to 4-By it off the curb. This was quite hard in Soren's old wheelchair/stroller. So on off-hours at school, I would not use the crosswalk and would zip Soren and I across from one driveway to the other. This was kind of dangerous because the street is a busy one. I was even given a finger wagging by the school secretary one time when I did this.

So, one day I was picking up Moira and came across another mom who was walking her son in a typical stroller. She too had to 4-By it and commented on how much easier this would be if there was a slope instead of a curb. I knew, with Soren's disability, I could actually get something done about this and help everyone crossing the street to get to or from school.

I did a little web search and found the ADA person to call in our city. I left a message stating the situation. Mike called me back the next day with the most sincere voice and earnest interest in getting this situation solved. Within a week, workers from the city were marking up the sidewalk in preparation for what is officially known as a "curb cut." Mind you, I called about this in around October of last year. During Christmas break of last year, the workers came and, by the time school was back in session, the curb cut was done and crossing the street was easier for everyone. Especially for me when we got Soren's new heavy-duty wheelchair.

The second issue came up regarding Soren's bus pick-up. We live close enough to the school that people who are dropping off or picking up their kids often block our driveway. On garbage day, people would even pull my trashcans up onto the curb and then park blocking the cans. It got to the point that I was having to police activity myself, yelling at parents who blocked my driveway. One time I came home during Kindergarten pick-up and was totally blocked. So I just sat there waiting, blocking the street, until the woman returned with her child. What amazes me is how innocent people act, as if they didn't know it was a driveway to someone's house. Or the people who actually get mad at me for calling them out (and I'm always polite).

Now, I'm sure parents did this since we originally moved in. However, I never knew about it because I worked during the day at an office. But now I freelance from home. And I have to get Soren onto the bus in the morning and off of it in the afternoon. This is decidedly hard when cars are blocking my driveway where the bus needs to pull to the side.

So once again I called Mike to see if I could have a Blue Curb painted for handicap access only. My request was forwarded to the right department and soon I got a letter of refusal--our city no longer did Blue Curbs. I got on the horn and tried to find out if this was legal according to the ADA. Turned out that lots of cities don't even have blue curbs. So I called Mike again and explained the situation more. He helped negotiate 5 feet of red, no-parking on our side of the driveway (which we share with our neighbors). This way the bus--a small bus at that time--could pull in without issue.

Now for the most part, people behave and don't block the red zone. But not always. And the universe is getting its sweet revenge on those not following the rules because now, instead of riding a small bus, Soren's bus is HUGE! It can't pull over at all due to all the cars. So it just blocks the street. I just smile and get Soren on and off the bus as quickly as I can.

But I must say that the city's response to both issues were quite quick and painless. We are really lucky to have the ADA!

Amy

Happy 100!

2008-09-30T12:52:00.000-07:00

Soren has been tonic-clonic free for 100 days! Yahoo!

In other news, we had his 3rd IEP (Individualized Education Plan) earlier this month. This is where we sit down with his teachers and therapists to see how Soren has progressed through the year and what goals we should have for the next year. I've written before that this is a big meeting where big decisions are made. This one went even smoother than last year's. Soren is going to continue getting the same services (PT, OT, Vision, and Speech Therapies) from the school or at off-site clinics.

One big change was that for one of Soren's PT sessions, we are going to an intensive therapy clinic called Joy for Kids. There Joy, the therapist, offers Therasuit therapy using a Universal Exercise Unit. We did an 3 week intensive of this 2 years ago and Soren made great progress. Joy has a contract with Soren's school district, so we decided to change his hour of school-based therapy to Joy's clinic. It means I have to drive Soren (he's taken to his other PT/OT session on the bus), but we think it's totally going to be worth it. He really needs this extra challenge to kick things up.

And with being seizure-free we have high hopes for this next school year!

Amy

Happy 5th Birthday, Soren!

2008-09-22T17:37:00.000-07:00

Soren is 5 years old today! We celebrated this weekend by going to Aaron's hometown of Enumclaw for a joint birthday with his Grandma Kris (whose birthday is the day before). The trip was great. Soren traveled wonderfully as usual (he was actually quite excited on the plane both over and back).

And his gift to himself and all of us for his birthday was 3 Months of Seizure Freedom!!!

Here's hoping this will the best, seizure-free year ever!

Amy

Slacking in My Blogging Duties!

2008-09-15T08:58:00.000-07:00

Sorry about my slacking off. As usual, things have been busy! First of all, we had the Triathlon and Team Soren did really well despite some hardships. The good news is, everyone finished safely! Eric Germansky, our lone, solo triathlete did a great job in the swim, bike, and run. Our women's relay actually came in second of all the women's relay teams. Rock on, ladies! And our men's team also finished well despite Keith getting not one, but two flat tires on the ride! But he got those fixed and powered on! The Team Soren Support Team was at the L.A. Live finish in downtown cheering our team on. It was fantastic!

Later that day, we had a party/silent auction/fundraiser honoring our athletes and celebrating Team Soren's success. A good time was had by all.

But my current great news is that Soren has now gone 86 days without a seizure. And he survived a second cold without any breakthrough seizures. He woke up stuffy on Friday with no precursor or seizures the day before. And none the entire weekend. We were a little nervous because, for the first time in almost a year, Aaron and I went away without the kids. We did a quick 27 hour trip to the Bay Area. I was a little nervous when Soren woke with that cold on Friday. But since he didn't have any seizures that day and his respite workers know how to give the Diastat, I felt okay about leaving. And Soren came through with flying colors, which made our trip all the more enjoyable!

I just gotta say, I love Clobazam!

Amy

Go Team Soren!

2008-09-06T11:24:00.000-07:00

Tomorrow is the Los Angeles Triathlon and Team Soren will be racing for our boy! Team Soren consists of Eric Germansky, who will be doing the entire triathlon, and two relay tri-teams: Chris Webb, Keith Anyon, and Ezra Weisz on our male team and Karen Wilson,
Kristen Van Rooyen, and Susan Reedy on our female team. The lovely Julie Miller had to step down from being on that team due to an injured back. Please think good thoughts for her and for all the athletes to have a good, safe, and successful race!

The Team Soren Support Team will be decked out in our official orange Team Soren T-shirts. They are awesome and I'll be sure to take pictures to show us wearing our colors!

It's not too late to donate! Please click on the donation button to your right and support Team Soren!

Go Team Soren!

Amy

High Five

2008-09-05T10:31:00.000-07:00

Labor Day Weekend we drove out to see my Grandma, Uncle, and Aunt in Paso Robles. We had a great time going to Hearst Castle, renting a boat on Morro Bay, and doing a few tastings at wineries.

I had set up for Aaron and Soren to do the Accessible Tour at Hearst Castle. It's only a 4 person tour, so there was no room for me and Mo. We did the regular Experience Tour and had a blast--Mo was quite amazed by Mr. Hearst's grand taste. Meanwhile, Aaron and the boy had an amazing private tour, getting to see new and different things where only wheels could travel. At one point, our two tours met up in the house. I could hear Soren's "Ah Oohs" before I entered the room.

Here are some pictures from the boat.

Both kids really enjoyed it. I mean, when Soren stays awake for something, that's always a good sign. And Moira got to drive the boat, which she loved.

The reason I called this High Five is because when we were at the Rotta Winery, Soren and Mo were hanging back while we tasted a few wines. A man approached Soren and, holding his hand up to him, said "Hey Buddy, High Five!" Well, Soren is not a "high-fiving" kind of guy and the man was just left there hangin'. I felt so bad. he was trying to be nice and inclusive. Thankfully, Moira saved the day and lifted Soren's arm up to high five the man.

What a great big sister.

Amy

Trip to Santa Barbara

2008-08-21T16:55:00.000-07:00

We took a lovely trip to Santa Barbara on Tuesday. We went to the Santa Barbara Zoo, my personal favorite of the few zoos I've been to. At the zoo, we each fed a giraffe. It was pretty cool. The pictures don't quite show it, but I helped Soren feed the giraffe, placing the biscuit in his hand. He did a really good job.

The picture that really shows it is of Mo feeding the giraffe.

Afterwards we went to our favorite restaurant, The Palace, and had lunch. Soren enjoyed some spicy crab cakes with avocado.

It was a good day.

Amy

Been Busy!

2008-08-18T19:37:00.000-07:00

Sorry I haven't updated in a bit. Things have been crazy-busy with the kids finishing up their summer vacation. Soren is done with summer school and has 3 weeks off before the new school year begins. So now he's in summer camp from 9-12 at his therapy center. He was a little grumpy the first day of last week. We think he may have thought he had to do therapy there. Once he realized it was camp, he had a good time.

And the update on his cold/seizure control is that he had this lousy cold for about a week and had no visible seizures!

We started the Clobazam 2 months ago this Thursday. That day (June 21st) was the last time I had to give him Diastat for his tonic-clonic seizures. We also noted that we didn't hear Soren have any night time seizures during our weekend in San Diego when we all shared a room. He does wake up some mornings with a little stiffness, but we really think this is because he's getting his legs into funny positions that he can't get himself out of.

Soren is alert, happy, a laughing a lot. People are really noticing the difference! Now if the FDA would just approve this amazing drug!

Amy

Unprecedented

2008-08-07T07:44:00.000-07:00

Soren woke up this morning very cranky. When I was giving him his milk, I noticed his nose was stuffy. I was afraid he might have a cold. Then when I stripped him down for his bath, I noticed he was a little warm. Taking his temp, it came to 100.9. Yep. Sick.

What is unprecedented is that his cold was not foreshadowed with a round of seizures. In all of Soren's life, when his defenses are down (or in the process of getting knocked down) he has seizures. We always freak, worrying why he's having the seizures, and then the next day he'll be sick.

But yesterday he was fine. He was happy. He went to school. No seizures. Just the cold today. It's gotta be the Clobazam. And I'm crossing my fingers that, for the first time, Soren has a cold--and just a cold--like any other kid.

Amy

Team Soren Logo

2008-08-06T19:02:00.001-07:00

I tried to post this yesterday when I was posting the link to

Team Soren

We have now raised over $1,500!

Thanks everyone!

Amy

Team Soren Blog!

2008-08-04T16:33:00.000-07:00

Team Soren

now officially has its own blog! There you can read about updates on Team Soren's training for the L.A. Triathlon on Sunday, September 7th.

You can also donate to Team Soren by clicking on the DONATE button either on that blog or here on Soren's blog!

You will also see our cool Team Soren logo! Check it out!

Amy

Capper-Friendly Comic Con

2008-07-31T16:47:00.000-07:00

First, let me explain the term "cappers." I heard a wheelchair bound woman use it once, talking about handicap accessible parking, calling it "capper parking" and referring to herself as a capper. I liked the simplicity and "coolness" of it.

Last weekend we all went to the San Diego Comic Con. The last time we went was 2 years ago, when Soren was 2 going on 3. While we knew about his disabilities, he was merely in a typical stroller, not a wheelchair. We had gone through the Registration Line like everyone else, is always long and annoying. Back then, we didn't even look for any sort of disabled help. I guess we weren't as immersed in special needs as we are now.

So when we went to register Friday morning, we gave ourselves a full hour to stand in line. As we headed to the Con, there were swarms of people. We actually passed the Disabled Services and kept walking, figuring we would go there if we needed something later. But when we tried to follow the able-bodied crowd to registration (which is up a LONG escalator), we were quickly directed back to Disabled Services. There we found the Land of the Comic Con Disabled. We gave them the staff our information and they went upstairs and got our passes. While we waited, we visited and chatted with other disabled folks. Within 20 minutes (probably less) we had our passes. They explained that if we wanted to go to panels, there were special places for wheelchairs and gave us little cards to put on our chairs so we could sit with Soren.

So we were ready to go. The only problem was, we still had 40 minutes to kill before the Con opened! If we'd only known! When the Con doors did open, they had the disabled folks get a "rolling" start before the able-bodied folks stampeded in.

We then went to get into a Powerpuff Girls panel. There was a HUGE line. I thought we were doomed. Then I remembered the special needs special spots. We were quickly brought in and they found a place where Soren and all of us could watch together. (I must admit, I did feel a bit guilty about this. I mean, all those folks were standing in line! For the next panels, I went alone and showed up early.)

It's rare that I find people with disabilities needs really catered to. I was really surprised and impressed by how the staff at Comic Con accommodated all of the cappers.

Amy

VOGUE

2008-07-23T15:09:00.001-07:00

OOOOH. YOU'VE GOT TO JUST....
LET YOUR BODY MOVE TO THE MUSIC...

OOOOH. YOU'VE GOT TO JUST...

LET YOUR BODY GO WITH THE FLOW...

DON'T JUST STAND THERE, LET'S GET TO IT...

STRIKE A POSE, THERE'S NOTHING TO IT...

VOGUE...

VOGUE...

Soren Sitting

2008-07-17T10:32:00.000-07:00

I mentioned a couple of posts ago about Soren sitting with me while we were at a Memorial Day party. Well, I was downloading pictures from my camera and found this one as proof!

Parents of special needs kids write to me a lot about the stem cell treatments we did in the Dominican Republic and what kind of changes we saw with Soren. (By the way, I love hearing from people so feel free to email me if you have any questions. I'm here to share what knowledge I have and offer what support I can.)

But as far as what we've seen since our treatments, Soren sitting with great neck and trunk control is one of the top things we've seen. After his first treatment, his PT noted it immediately.

Another thing is laughing and smiling. After Soren's second treatment (in fact it was that night) Soren started laughing his butt off. Prior to that treatment, I had heard him laugh 2 or 3 times. That was a year and a half with only those brief laughs. Now Soren laughs a lot. Often we don't know why. he was laughing this morning at 5:15 for no particular reason that we knew of. He was alone in his room. I'm not sure if he was awake or asleep. But something tickled him and he laughed.

Since our last treatment back in December, Soren just seems more "with it." He's more alert, stays awake longer, and seems to want to be with us more.

Do we wish we'd gotten even more? Sure. Do we wish the seizures would go away and our boy would start developing like any other kid. You betcha. But are we happy with what we've gotten? Absolutely.

Oh, and a Clobazam update. Soren is now on the full dose and (knock wood) we haven't seen any tonic-clonics. He's also been waking up with little to no soreness in his legs. Again, only time will tell. And another good thing is that he isn't all dopey on it. We see Soren's neurologist next Thursday so we'll see what he says as far as removing the Lamictal or the Zonegran.

Amy

The Ring Bearer

2008-07-14T12:40:00.000-07:00

Hello again!

Sorry for the delay in updating post-wedding. It's been a busy time! Our trip to San Antonio went without a hitch. Soren is now a seasoned traveler (and we are well-seasoned at traveling with him) so he did very well. No seizures of note, which is always our fear when traveling.

And he was a wonderful ring bearer. Here are a few pictures of him. I'm hoping to get some of the official ones soon.

Soren did his job very well. He was awake and alert. He wasn't noisy with his usual "aah oohs" that often come out during quiet moments.

The plan was for Aaron to stroll Soren down the aisle and then have Aaron hand me the rings. But Aaron had the idea of taking the ring box from his pocket and putting it in Soren's hand. Aaron then practiced assisting Soren giving me the rings with his hand over Soren's. Soren practiced this very well. Though when the time came during the ceremony for the hand-off, Soren was not very willing to open his hand for the box. But Aaron was patience and got his hand open and Soren "handed" me the rings. It was very sweet and I think got some people a little choked up.

I know I was very proud of Soren and happy he got to be part of this important day in my brother's life!

Amy

Quick Update

2008-07-02T12:16:00.000-07:00

Hello!

Just wanted to update everyone before the big 4th of July weekend. The art opening went off very nicely last night. A few pieces sold. And the art will be up for the next month at Cartoon Network if you want to swing by and buy something. Thanks to everyone Cartoon Network for all their help in hanging the show and for throwing the party!

On Saturday, Soren will be up to a therapeutic dose of Clobazam. So far so good. He's not extra loopy or anything. Now we just have to see if it stops the seizures.

Also on Saturday, my brother Patrick will be getting married and Soren will be the ring bearer. Aaron will stroll Soren down the aisle where the rings will be handed off to me (my sister and I are standing up for Patrick). I must admit that I am both excited and nervous about Soren's ring bearing duties. Will he be awake for it or will he just shut down? Will he be happy and chatty and disturb the ceremony? Or will he be angry like he was at the art opening last night? As with everything, it's unpredictable. But I'll send an update after the event! (and hopefully pictures too)

Amy

4 Soren with Love

2008-06-27T16:31:00.000-07:00

Hello all,

On Tuesday, July 1st, Cartoon Network will be hosting the art opening reception of "4 Soren with Love."

If the title seems familiar, it's because this is a continuation of the 4 Soren art show at Monkeyhouse back in January. A number of pieces were not sold and have taken residence in my garage. When I failed to sell them on eBay, I spoke to the folks at Cartoon Network to see if the art could be hung there and possibly (hopefully) sold for Soren's cause. They very generously agreed. The money raised will go to continuing payment of our new wheelchair accessible van and other various medical expenses.

The reception begins at 5:30 pm.
The address is...
Cartoon Network
300 N. 3rd St.
Burbank, CA 91502
it's on the corner of 3rd and Palm.

Hope you can make it!

Amy

Clobazam

2008-06-21T11:35:00.000-07:00

When last I wrote about discovering Soren's night seizures (which I now have the song "Night Fever" by the Bee Gees in my head but instead I sing, "Night Seizures, Night Seizures. We know how to do it.") I noted that we were looking into starting Soren on Clobazam and possibly weaning him off another drug.

Well, we didn't start Soren on the Clobazam yet because, though we had a little secret stash, we found out that getting more was a little more involved than expected. Since it is not FDA approved, we not only had to get a prescription but also had to get a letter of necessity. And since Soren's doctor was out of town, there was going to be a delay. Then that information had to get to the pharmacy in New York that is approved to distribute it. Then I had to call the pharmacy and order the drug, since we have to pay out-of-pocket. And then it had to be sent to UCLA and then to us! Whew! So we didn't want to start Soren on a new drug and then run out of it before we had our refill. The good news is that we got the Clobazam yesterday and will start bringing him onto it tonight.

I actually very briefly considered not doing this--or at least pausing. Soren's legs haven't seemed as painful the past couple weeks when he wakes up. And this past week he's been really active. Usually when we put him to bed, he stays in one spot, on his back all night. But recently he's been moving all over the bed, sleeping on his side, and even sleeping on his belly. It's been great to see the activity. And it's been a relief that he's been on his back less since we worry about skin breakdown.

But my thought to pause was completely obliterated this morning. Soren, who went to bed a little later than usual, was sleeping-in rather late. At first I thought nothing of it but then, just as I was beginning to worry that something else might be up, he had a big tonic-clonic. I then realized that he had probably had a few others earlier this morning, thus the late sleeping. When he finally woke up, I got his meds into him and tried to give him milk. But he seized again. I gave him Diastat and now his down for the count. So the Clobazam will begin tonight. Hopefully we will get the results we're looking for (i.e. no seizures).

As a side note, we did not end up weaning either of Soren's other meds. I asked and got a resounding NO (or it at least seemed resounding in the email since all it said was NO). We see Soren's neurologist in a month and will be on the full dose of Clobazam by then. We'll discuss cutting out another drug at that point.

I'll update you as things continue.

Amy

Sign o' the Times

2008-06-11T09:53:00.000-07:00

As I've noted before, Soren attends an all special needs school. We love this school--the teachers, the aids, the secretary, the nurse, the principal. They work Soren hard and clearly care for him and all the other kids.

But every time I went to pick Soren up for Feeding Therapy, I was met with this sign...

There's one as you drive in and one as you drive out, hitting you coming and going. Now, this is a common sign which simply means, "Please drive slowly, there are children present." But in the context of a school for children with special needs, it seemed like an advertisement. "SLOW CHILDREN! GET YOUR SLOW CHILDREN HERE!" Every time I drove in I was like, "Aw, come on! Really?"

I voiced this to Aaron who took action. At Soren's Open House, we approached the principal and asked if we could replace the Slow Children sign with a Caution Children sign. We wanted to include a figure that was wheelchair bound. We replaced the other sign with this...

I know it may seem like a little thing, but now when I drive into school, I smile.

Amy

LA Triathlon! Join TEAM SOREN!

2008-06-03T16:24:00.000-07:00

On Sunday, September 7th, our friend Eric is going to compete in the Los Angeles Triathlon. His goal for doing this event is to raise funds for Soren for another stem cell treatment. In addition to this, he and his wonderful wife Sue are going to throw an after-party/silent auction/rousing night of entertainment that is sure to be a blast!

We think it would be great to create Team Soren, pooling together anyone athletically inclined who is interested in doing the LA Triathlon and raising funds for Soren. The LA Triathlon offers the Sprint Distance - .6K swim, a 12 mile bike and a 5K run – and also the Olympic Distance - a1.2 K swim, 25 mile bike race and a 10K run.

If you have never done a Triathlon but always wanted to, this is your chance. We will provide you with a training schedule that will prepare you for the race as well as organizing a couple training clinics in which we will share great race tips and transition techniques.

Now, if you are interested in this, but are not up to running, cycling, and swimming, never fear! We are also putting together relay teams. So if you can run like the wind, but you can’t cycle for beans and/or the thought of swimming in the ocean makes your heart sink, we will match you up with folks who can.

But, to do this, WE NEED YOU to join Team Soren! “What do I get for joining Team Soren?” you ask. First of all, we will cover your entry fees. Secondly, we will provide you with a fantastic Team Soren shirt to race in.

We are also designing Team Soren shoes by Nike. Now, we can’t pay for these, but if you are interested in purchasing them as a team member, they will be available.

And lastly, you will get to come to the awesome after-party where you will be treated like a god for busting your butt and raising funds for Soren!

Also, by competing in the LA Triathlon, you will receive a Finishers Medal, a Tee Shirt and tons of other goodies. For more information, check out

The LA Triathlon Site

So if this sounds like something you really want to do—either the entire triathlon or just a portion—please email me at amykeatingrogers@pacbell.net. Please also feel free to email Eric Germansky at ericgerm@sbcglobal.net if you have any questions about the race.

Thanks!

Amy

Memorial Day Party

2008-05-29T10:35:00.000-07:00

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

2008-05-22T08:42:00.000-07:00

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

2008-05-07T20:26:00.000-07:00

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

2008-05-05T14:56:00.000-07:00

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

30 Days Seizure Free!

2008-04-25T11:11:00.000-07:00

That's right! Soren has gone a full 30 days without a seizure. I'm in my "waiting for the other shoe to drop" mode, but still enjoying how happy and "with it" he's been lately.

Even more amazing to me is that in the middle of this seizure freedom, we had Spring Break. And we were all over the place. We drove to Scottsdale to see my sister, went to Disneyland with friends, went to the mountain cabin of other friends. All this travel and change of routine could have easily upset Soren's applecart. I was so excited driving home from the mountains last Sunday, but didn't announce our success until we were safely at home.

Speaking of Spring Break, we really had a great time (and I know part of that is that Soren didn't have any seizures). At my sister's we played in the pool. And though Soren wasn't happy with it at first, he eventually resigned and fell asleep. At Disneyland he did much of the same until he hit the Tiki Room. That kid LOVES the Tiki Room! He was perky for it at our last visit and we thought it was a coincidence. But he seriously had slept through most of the day (except lunch) but when when those birdies sang and flowers crooned, Soren listened and watched following the lights and sound. And he was happy in the mountains. This time he either slept in the warm sun or kicked on his blanket enjoying the breeze. It was great.

We also went to see Soren's neuro-ophthalmologist during break. This cracks me up because in the waiting room Soren was awake, alert, and chatting. I rolled him into the room and he looked around with a sly glint in his eye. The doctor turned around to look in his eyes, and Soren immediately began bobbing his head and falling asleep. The kid is aware, crafty, and a big stinker!

Here's Soren at his best--awake and asleep (well, almost asleep).

Amy

One Cute Boy

2008-04-10T08:49:00.000-07:00

Okay, I know I'm biased, but Soren is one cute little boy.

This weekend, we were painting the railing and the facing of the ramp (sorry Doug, we had to do it). While the ramp was built out of beautiful redwood, we wanted it to blend into our house as much as possible so it didn't scream WHEELCHAIR RAMP when people walked by. And since our house is rather colorfully painted, it was currently standing out.

Soren and Mo joined us in the painting. And Soren just loves 1) a family adventure and 2) being outside. If we can manage both, he's usually quite happy (and if he's not, he just goes to sleep).

Well, today he was happy. He was decked out in some sort of combination between a little old man and a cool hipster--not a look many can pull off. He was rockin' some sweats, a nice cable knit sweater, and a fetching fisherman's hat. He was so animated, I neglected my painting duties for a bit to get some pictures. When Soren is feeling photogenic, you have to jump at the chance or the moment will be lost.

I took a lot of photos, but here are just a few of our silly, adorable boy.

Amy

Soren's Sweet Ride

2008-04-04T20:31:00.000-07:00

In my pictures of the van, you all got to see Soren's new wheelchair. Some folks of kids with special needs have asked me what this fine ride is.

Well, it is a Zippie by Quickie. And it is both quick and zippy! (Note that I spell zippy correctly. The Quickie folks spell it with the "ie.")

It is so very awesome. It has a super easy "tilt-in-space" feature. There are two levers on each handle so that we can tilt Soren back. It rolls super easy. It has tie-downs for the bus. And the EZ lock bolt was added at the bottom so we can lock it into the car.

And you can't see it in these pictures, but the actual seat is so cushy! The bottom piece is contoured for his butt. The back is nicely padded. It was all custom ordered just to fit him. Very, very nice!

Check it out.

Soren and my first trip out in the new van with the new chair was very interesting. In Soren's old seat, people would generally take little notice of him. He didn't stand out as a kid with special needs.

But when we went to the market that Saturday, I pulled into the van accessible space and had the ramp come out. There were some Girl Scouts selling cookies in front of the store, so I had an audience for my first try with all this new equipment.

Then when I went into the store, there were lots of looks at Soren, who was sitting up like a big, tall boy in his new chair. In a real wheelchair, there was no hiding his inability to walk. There were quick glances at Soren and quick glances at me. People said sweet but sad hellos to Soren. I didn't expect a change in equipment to bring about a change in people's reaction to us.

Still, it is a really nice chair and I know I'll eventually get used to the stares.

Amy

In Memory of a Beautiful Girl

2008-03-30T08:51:00.001-07:00

Yesterday we got word that a little girl from our Epilepsy Support Group passed away last week. She had a horrible neurological condition called Batten's Disease. Only children are diagnosed with Batten's. It is fatal and most of them do not make it to 20 years old. This little girl was a typically developing child and then, I believe at 5 years old, starting having seizures. It took them a bit to get their diagnosis. And with that diagnosis, there is not much to be done.

However, this family did not give up and went to for stem cell treatments at least 2 if not 3 times. And they actually did some good. She had lost her ability to walk and regained it after one of her treatments. The problem is, Batten's is progressive, and she lost the ability again. They were actually supposed to be getting another treatment this weekend.

But 2 weeks ago, this lovely girl went into Status Epilepticus. This is when you start seizing and no medicine can stop it. That means that the fail safe of Diastat that we as parents hold onto like a lifeline, did not stop her seizures. So she went to the ER and was admitted into the PICU. When you get to this state, they try to put you into a medically induced coma to try and stop the seizures. But her seizures were persistent and they had to keep dropping her deeper and deeper into a coma. She finally passed away on March 25th. I believe she was only 10 years old.

Her parents said of her, "Even though she had a devastating and terminal illness, she never lost her spirit and retained many of her abilities until her untimely death."

The family had a wake yesterday at their house. Aaron and I decided, since we had our respite worker coming that evening anyhow, to go to the wake without the children. I didn't know how accessible the home was and I didn't know how Moira would take to this situation. I'm glad we made that decision. I was expected just a wake.

When we arrived there was a bag pipe player playing Amazing Grace. People were crowded into a little bedroom where the body was laid out traditionally in her bed in a beautiful dress, candles all around, and adorned with flowers. I was reminded of Frida Kahlo. Around the room were big pictures of her and her family smiling, laughing, enjoying life. It was overwhelming, heartbreaking, and moving.

I spoke to her mom and she talked about how we (parents of kids with Epilepsy) always assume that Diastat will work. That the other possibility is unimaginable. And if she'd really fully grasped that possibility, they may not have done half the things they did. In December they had gone to Utah and were at a farm that was miles from a hospital. Her daughter was having break through seizures at the time, but she thought it was normal, as we all do. They may not have taken that trip if she'd known what was going to happen only months later. But then she was glad she didn't know because they all had a wonderful time. A time she wouldn't trade in for anything.

I said that she was right to take that trip and not live in fear. We can't stop living life. Not taking that trip wouldn't have changed this outcome. It's hard, but we can't let the seizures rule our lives.

It was a beautiful gathering. It was hard to be there but it was important to be there. I'm just so sorry that we lost this little girl.

Please think of this family and send them your love. May they all find peace.

Amy

The Soren-Mobile!

2008-03-25T11:34:00.000-07:00

The Soren-Mobile (as it was termed by my friend Alexx) was delivered last Thursday and has hit the streets!

And it is such a dream! I mean, the Honda Odyssey is a nice van to begin with. Then, to have it accessible for Soren--amazing!

Here you can see the ramp extended out from the bottom of the van. All I have to do is push a button to open the door, the van then begins to lower as the door pops open, and then the ramp comes out. Now we can go straight from the ramp into the van--no more painfully awkward transfers into the car seat!

Next you see the EZ Lock system.

We aim Soren's new chair for that lock and, under his chair, is a bolt that clicks in and locks. E-Z, as advertised!

Then I can spin the chair around, so Soren can face front.

And the other side door also opens with the push of a button, so when I get him in or am getting him out, there is an easy escape.

Because the entire center section is now devoid of seats, Moira gets the entire back bench, which she has made her own with pillows and toys.

Now there are some things I'm still getting used to. The driver and passenger seats sit a bit higher than my old van. Getting my short body into the car has resulted in some bruises, but I'll figure that out. Oh, I also got a nice bonk on my leg when I opened the ramp door, went to throw a bag in before loading Soren, and got whacked by the ramp extending out! Whoops!

If Soren's chair isn't locked in to the EZ lock, an alarm sounds. This is great! But if he's not in the car (thus, not locked in) it also sounds. So I have to hit a special button to turn this off. Next, there is a release button to unlock the chair to wheel it out. Again, EZ. But I have 5-8 seconds to move his chair forward or it relocks! Now that's some pressure!

But really, I LOVE THIS VAN! Soren and I went to run errands on Saturday and it made everything so much easier. We got in and out of the van 3 times with so much less drama than usual.

Now I just have to think of a side business to use the van for while Soren is at school. I mean, did you check out the space I have now? I could do deliveries. I could set up a massage table. Or maybe I'll just put my long board in there and go surfing. I need a little R&R.

Amy

Brief Seizure Update

2008-03-16T10:16:00.000-07:00

Soren went an awesome 36 days without a seizure! It was fantastic. Last Saturday we went to Disneyland and Soren had a great time, smiling and laughing through most of the trip.

Then Monday before getting him off to school, he had a whopping 60 second tonic-clonic. Hoping this was the only one for the day, I sent him off to school. I then quickly ran all my errands fearing the call from school that would send me there to pick him up. Sure enough, at 10:30 school called. Soren had had another seizure and was too conked to continue school.

So I got him and brought him home, where he had a 3rd seizure. So I gave him the Diastat. Later I noticed Soren had a fever of 102. I got the fever down and kept him home Tuesday. There were no other signs of sickness so he went back to school Wednesday, but was rather pokey through the day and, actually, the rest of the week. But then I'd be rather pokey too if someone had put Valium up my tush.

This weekend he's back to his silly, chipper self. Hopefully we'll have another good long run without seizures and make it to 40 days!

Amy

LEX EASyS Stroller/Wheelchair

2008-03-15T11:24:00.000-07:00

At long last, Soren's fancy new wheelchair was delivered this week!

After getting it, I had to drop it off at the place that has our new van to have it outfitted with a special EZ Lock bracket so it can lock into the van, um, easily.

So before I reveal the new chair, I wanted to pay homage to his current Thomashilfen LEX EASyS Stroller/Wheelchair because it has served us well. It has amazing tilt-in-space features, so we can tip Soren back if he's conked out. It positions Soren incredibly well so he can sit up nice and straight. Plus it has grown well with Soren with its adjustable features. And because it is technically a wheelchair, it has the all-important tie-downs needed to ride on the bus or the Disneyland Parking tram!

It's had a few drawbacks, of course. It weighs about 40 pounds and is incredibly awkward for us to fold, load, and unload into and out of the van. I have the bruises on my legs and scratches on my van that coincide with it being cumbersome. And the chair is equally beaten up. The sunshade is actually broken from overuse. But I believe we have had this chair for over 3 years, so it's done its time well.

As you can see, it does look like a stroller, which has been a nice feature while Soren was little. It made his "disabilities" less conspicuous, which was frankly good for us as we adjusted to the fact that Soren may not walk.

In fact, it looks so much like a nice, upper end stroller, we've gotten some amusing (if you have a dark sense of humor) responses. One time, we were all at the L.A. Times Book Fair and we heard an older couple comment that it was one of those "expensive" strollers. Well, yeah, it is, but for different reasons then they assumed.

Then there were the women who saw me loading it up in a parking lot one day. They asked if it was a Bugaboo (retail $730). I smiled and said no, that it was actually a special needs stroller (retail $1,700). You'da thought I'd said Soren had the plague . Those ladies couldn't walk away fast enough. However, they did take the time to glance back into Soren's open door to see "what was wrong with him." Part of me really wanted to scare the crap out of them and yell, "Stop! Don't ever look directly into his eyes! You might catch The Epilepsy!" But it wasn't worth it. Plus trying to look directly into Soren's eyes is actually a rather big challenge.

But, I digress. Thank you LEX EASyS for being a noble, sturdy ride for Soren. I hope I never have to lift you into or out of my van again!

Next week (knock wood) Soren's new wheelchair and our new van!

Amy

Soren's DAFOs

2008-03-04T13:50:00.000-08:00

DAFO stands for Dynamic Ankle Foot Orthoses. In other words a leg brace that supports the ankle and foot. For Soren this is very important because he is not a fan of freestanding (though word on the street is that he does it at school). But for him to stand properly, either in a stander or on his own, he needs to have his foot properly positioned. On his own, Soren would turn in his feet instead of planting them squarely on the ground. So his DAFOs put his foot at the right angle and give him the support he needs.

DAFOs are custom made to fit a child's foot and ankle. A mold is taken and the brace is then made with special padding that hits particular points for proper positioning. Soren's braces are made by a company called Cascade. When custom-making these braces, you get to pick out colors and ribbon details. And since Soren doesn't express his opinion on this, I have made the choices for his past 2 pairs of braces.

We got his first pair right after Soren turned 2. So, in my mind, Soren was still more of a baby. So I picked out green and cute dots for his details, appropriate for a little boy.

Well, when it was time for Soren's 2nd pair, he was a big boy of 4! Time to toughen-up that image, I thought. So check out Soren's cool new DAFOs.

Nobody's gonna mess with a kid rockin' these flames! These babies say, "I'm rough and ready to stand on my own!"

Amy

LOST

2008-02-29T13:45:00.000-08:00

No, you haven't stumbled onto a blog about the ABC show "Lost," though I am a huge fan. I'm writing about the many people who have found me through Soren who sound so lost.

In the past two weeks I've been contacted by 6 different people I've never met before who have either found this blog by searching for information on Infantile Spasms or stem cells, found me through friends of friends, or approached me personally upon seeing Soren.

1) A family in Dallas whose daughter was recently diagnosed with Infantile Spasms.

2) The daughter of a co-worker of a mom from Mo's school.

3) A mom who saw Soren when we were out to lunch and was interested in his cool seating system.

4) A parent from Wisconsin whose son also has IS.

5) A "stranger" at Soren's horse therapy.

Now this last one was a doozy. The woman I met yesterday is the step-daughter of a man we met almost a year ago when we were up in Ventura for Mo's birthday. He approached me when he saw Soren and told me about his granddaughter with special needs. We had a few email exchanges. Then yesterday, Soren and I were at horse therapy and a new mom was there with her daughter. She heard Soren's name and then asked me, knowing that this sounded strange, if we'd met a man a year ago while we at the Pierpont Inn! Amazing!

And all these people have two things in common--a child with special needs and the feeling that they are the only ones in this situation. With each person that contacts me, I'm sad that we are all in this situation but I'm glad I'm there to talk or write to them.

There are so many families out there whose children are getting diagnosed with seizures or some other sort of ailment that will profoundly affect their ability to learn. Every state system is different. Systems are different within each state. It's all confusing. You don't know what to ask for for your child. You don't know what's too much or too little. As with any other big system, different people tell you different things. For those of us with little options, we're willing to try anything but don't know what works, what doesn't, and when to take a chance.

But thankfully, because of the internet, we can all chat with each other, share information, and assure one another that we're not alone. Aaron calls them our fellow travelers.

Well, fellow travelers, please continue to contact me and approach me and will tell you what I can about our journey with the Captain of our ship, Soren.

Amy

Thanks Uncle Mike!

2008-02-22T15:34:00.000-08:00

My Uncle Mike came and built this amazing new ramp for Soren. Check it out!

It's really lovely and will blend quite well with the house once we paint the railings. Folks in the neighborhood have already been giving me compliments on Mike's work.

And they are compliments that are so well deserved considering Mike built most of this in the nasty weather we've been having. I can't thank him enough!

Wheeling Soren to and from the house to the bus these past two days has been a dream. And today it was raining, so I was able to zip Soren in really quickly thanks to the ramp!

Thanks Uncle Mike!

Amy

February Soren Update

2008-02-18T13:29:00.000-08:00

Hello all,

Because I've been so busy with the fundraising stuff, I've been a bit neglect in giving actual updates on Soren. So here's the update!

Soren is doing well. The past couple weeks he's been smiling, "chatting," loving school, and enjoying the great outdoors (our backyard).

As I noted, the year started out rough with some bad days of seizures. But then he actually went 22 days without from January 11th to February 3rd! And I think he would have gone longer if he hadn't woken on the 3rd with a nasty cold and eye infection. Poor fella! Even still, he only had one tonic-clonic and one absence with a bit of jerking that day. All things considered, that's not bad for being sick.

So now we are on day 14 without seizures. Let's hope I'm not jinxing this by writing about it.

Oh, funny thing while Soren had his eye infection (well, funny to me, probably not to him). I had to put drops into his eyes every four hours. Well, if you try and pry Soren's eye open, he will clamp his eye down tight. So I started doing the sneak attack. He'd be innocently looking up and WHAM! I'd put a drop in his eye. The first couple times I did this he was just stunned. Then he started complaining about it saying, "Ma-MA!" completely offended. Finally, he just didn't trust me anymore and would close his eyes when I came near with the bottle. Smart kid.

Soren saw his neurologist earlier this month and we had two major questions--could Soren be in the Clobazam study and should we consider implanting the VNS. The first answer was No. Soren is not a candidate because he does not have what are known as drop seizures. From what I understand, drop seizures are when you seize and then lose muscle control, thus dropping you to the ground. In Soren's seizures (generalized tonic-clonic) he stiffens up and jerks.

However, his doctor did think that Clobazam was a good drug to try next. The trouble is, it's not currently FDA approved in the U.S. (thus the studies). The reason for this is that Clobazam is, to put it simply, a modified version of Valium, which is a controlled substance. However, there are still ways to get it, your insurance just doesn't pay for it. There's, of course, the internet. The other way is there is one pharmacy approved to sell it in New York. They get it from another country who then ships it to New York, the pharmacy (upon receiving a proper prescription) sends it to UCLA, UCLA sends it to the patient.

Currently we're pausing on starting this because, 1) Soren would then be on 3 AEDs, which we are not excited about, and 2) Soren may actually be doing well on his current levels of Lamictal and Zonegran. We increased the Zonegran on Jan. 1st. He had bad days on 1/9 and 1/11, but the new dosage might not have fully been in effect. And, as I noted above, he did quite well through the cold on this current dosage.

So, we wait for a "bad day." If he has one with no other extenuating circumstances having caused the seizures (illness, heat) then we will probably start the Clobazam. Then we would wait to see it's efficacy before removing one of the other drugs.

Ooh! In other big news. Our van is safely in Canoga Park! Why isn't it here at our house? Well, let me tell you. In preparation for the new van, wheelchair ramp, making our lives more accessible overhaul, we ordered Soren a new wheelchair. He is currently growing out of his wheelchair/stroller which has served us well for over 2 years. So we ordered the chair, a potty seat (how's that for optimism?), and a lift (to help me get him in and out of bed, up from the floor, and in and out of the tub). However, things have gone less than smoothly as far as billing insurance so we still do not have the chair.

The problem with getting the van when we don't have the chair is that the chair has to be fitted with a special bracket so it can be easily locked into the van when driving. We could have the bracket put on his current chair, but the chances of it fitting his new one are rather slim. Then outfitting the new chair with a bracket would cost an additional $500-$800!

So we are waiting. The van is safe and ours. The chair will be here soon. We're very appreciative for all this equipment, so we will just be patient. By March we are hoping to have both the new chair, the new van, and a far more accessible life!

But this week my Uncle Mike will finish building Soren's ramp at the front of our house! He started it last week and it's looking awesome. He'll be back tomorrow to finish it up over the next couple days! Sweet!

Amy

Still Want Some Art?

2008-02-11T21:04:00.000-08:00

I've got lots! It's in my garage! All the stuff leftover from the Monkeyhouse show is with me and I'm (slowly) putting it up on eBay for sale. Slowly, slowly, slowly. I'm just learning and I clearly have a very poor learning curve.

BUT, if you want some art, just go to eBay and type in "4 Soren" (without the quotes) and all of his listings will come up. Currently, there are only 10 listings. But I'm working on getting the rest up this week (or in the coming weeks).

Currently, I'm not shipping because that's even more for me to learn and, as I mentioned above, I'm having issues with the whole "teaching an old dog new tricks" thing. So right now it's for pick up at Monkeyhouse. But if you REALLY want something and you sweet talk me, I may ship it to you.

And finally, as usual, all the money goes to the Talbert Family Foundation which in turn then comes to Soren--they don't take a cut. It all comes to him! And then it all goes to the VAN!!!

So, check out the art, see if you want something, and bid on it! There's a lot of cool stuff!

Amy

The Skinny on the Mini

2008-02-05T14:48:00.000-08:00

The Mini Van, that is.

This is a big story, so get ready. But I'll spoil the ending by telling you now that it ends quite happily!

I'm not sure where to begin, so I'll begin at the beginning. In October of 2004, the lease on our old mini van was up. We decided that rather than go into another lease, we would buy a new 2005 Toyota Sienna. At this time, Soren was just over a year and we fully expected (hoped, prayed) that he would be walking in the next couple years.

Well, 2005 came and went and there was no walking. Same with 2006 and 2007. So as 2007 neared its end, we decided that we needed to convert our Sienna to make it wheelchair accessible. I had spoken to a variety of parents and been told that the state would only cover $10,000 of this. I was also told that this could cost between $20,000-$28,000.

When Mayra at Monkeyhouse contacted me in October about a fundraiser in January, we figured the timing was perfect. We would have a fundraiser to convert the van!

In January, just as the fundraiser was about to start, I contacted the Regional Center (the state agency for people with special needs) that Soren is with to begin the process to see how much they would cover. I was asked by them to get 3 bids from 3 vendors who specialize in converting vans and in selling already converted vans.

When I called these vendors, I told them that I needed to get a bid on converting my 2005 Sienna. And they told me it was too old!

I was stunned and bummed. Too old! But...but that's our NEW car! Aaron's still driving his 11 year old truck and we were hoping it would hold on a few more years. Suddenly we were in the market for a new or slightly used, already converted van, which was very much not in our plans.

So I got three quotes for vans that were already converted. 1) A 2006 Toyota Sienna with 7,000 miles, 2) A new 2007 Honda Odyssey, and 3) A 2008 Toyota Sienna. The Regional Center looked at all these quotes. They weren't looking at the price of the car--that would be our problem. Their concern was the price of the conversion. The first two came in within $300 of each other. So they asked which we would prefer. Well, the new 2007 was actually $600 less than the used Toyota, so that seemed like a sweeter deal.

Now, mind you, while all this was going on, I was flipping out. I got quotes on these cars, but these cars are VERY desirable. Depending on how long the approval process went, the vans could be gone. There was only this one used 2006 on the one lot. And the 2007s on the other lot were going fast. Plus their good price was only going to last until January 31st! I was also flipping out because WE WEREN'T REALLY IN THE MARKET FOR A NEW CAR!!!

So I'm sweating bullets hoping to get the answer soon and hoping that the fundraiser goes INCREDIBLY WELL to off-set the amount we had to pay. And amazingly, the Regional Center approved the ENTIRE COST of the conversion for the Honda Odyssey, which came to over $18,700! Woof!

I totally wasn't expecting this. It was not what I'd ever heard from any other parent. And I'd spoken to quite a few.

But the good news about the Regional Center covering the conversion was that the fundraising money could go to the cost of the van. And now, to date with our fundraising, we've raised over $13,000! Everyone was remarkably and wonderfully generous. Family. Friends. Strangers. People just gave and gave! That money has made it so we can do our part with the purchase of the Odyssey, which will be delivered to us by the end of the week!

This has been a serious whirlwind. I made the first call to the Regional Center in early January. And once that train started down the track, it didn't stop between getting bids, having the fundraiser, getting approval, securing the van, getting the money, and paying for the van.

I cannot thank you all enough or express how much this will help our lives. Every time I load Soren into his car seat, it's getting more challenging. I end up having to toss him in like a sack of potatoes, which is hardly pleasant for him. I've clocked his head against his chin, giving us both headaches. And loading his full wheelchair stroller into the back of my van has wrenched my back one too many times.

Soon we will have this van and a new wheelchair for Soren (though his wheelchair stroller is approved for car travel until then). My Mom's brother is building a ramp at the front of our house next week, which is also being paid for by the Regional Center! So I'll be able to just roll him down from the house and straight into the van.

And what of the "old" van? Well, we were going to sell it to help pay for the rest of the new van. But since Aaron's truck is going to start costing us more money than it's saving us, and since we own the "old" van, which is newer and safer than the truck, we will become a 2 mini van family. In the end, this will be good in the event of an emergency with Soren--if I'm driving the converted van and unreachable, Aaron can still pick up Soren in a pinch.

So that is the Skinny on the Mini. Thank you all so very, very much!

Oh! And art is still available monkeyhousetoys.com. Just go to Original Art on the left and that will lead you to an icon for the 4 Soren art show. The money will continue to go to this unexpected, but amazing, life-changing purchase!

Thanks!

Amy

Buying Art Show Art

2008-01-30T13:29:00.000-08:00

Hey Everyone,

As I mentioned in the previous post, a bunch of the art from the 4 Soren Art show at

Monkeyhouse Toys

is available for sale if you go to their site. However, once you get there, the trick to finding the art is to click on the ORIGINAL ART heading to your left.

If you see something you like, give Mayra at Monkeyhouse a call at 323-662-3437. She's open from 12-6 every day but Monday (12-5 on Sundays).

Even more pieces are available at the store and more are coming in for the Closing Party this Saturday, February 2nd from 3-7pm. Soren will be there from 3-5 if you want to come by and say hi!

Amy

ENCORE-4 SOREN!

2008-01-23T20:34:00.000-08:00

We had so much fun and did so well at Soren's Opening Reception, Mayra at Monkeyhouse and I have decided to have a Closing Party on Saturday, February 2nd. We're going to have it start earlier so that the boy we are raising funds for can actually attend his event!

The party/art sale will start at 3:00. I'm not sure how long it will go, though Soren will probably leave around 5:00 for dinner!

But we need more art! As I noted previously, we sold over half of what was donated. So if you want to help fill those walls, email me!

Oh! You can still go to Monkeyhouse to buy art and toys with the funds going to Soren. They are open from 12-6 Tues.-Sat. Sunday they co from 12-5. They are closed Monday.

And the available art should be going online in tomorrow, Thursday, Jan. 24th. It would have been my Mom's 62nd Birthday! Rather fitting that you will be able to buy something to benefit her grandson.

Thank you all!

Amy

Art Show Success!

2008-01-21T14:31:00.002-08:00

Hey Everyone,

It's been a crazy couple days, with Soren's fundraiser and then recovering from Soren's fundraiser.

But the Opening Reception at Monkeyhouse went great! We had a HUGE turnout. I was running around like a crazy chicken, overwhelmed by it all.

Nick the Ring was an amazing DJ. Trader Joe's provided yummy snacks. And Silver Lake Wine Co. provided the fantastic wine!

And we sold art. Lots and lots of art! Of the pieces on the wall from the post below, I think 38 pieces sold! And the ones that didn't are awesome too, so I'm sure they will soon!

Beyond the art sales, people were very generous with donations, which was so lovely.

By the end of that evening, we raised over $8,000! That freakin' rocks!

And it actually went SO well, we are thinking of having a closing night party! We have extra wine. We're just looking into getting more art to fill the walls. So if you want to throw in an art piece, there's still time!

Thank you to everyone who donated pieces! Thank you to everyone who came! Thank you to everyone who purchased! And thank you to everyone who donated!

And a HUGE thank you to two amazing women.

First, MAYRA AT MONKEYHOUSE!!!! She has been so generous with her time and her space. And she is surrounded by wonderful friends who donated their time to help hang the art and set up the party.

Second, my amazing friend Sheri, who drove out for the event, helped me pick up wine, also helped set up the party, and kept my hydrated all night. Seriously, I was so busy, I didn't eat or drink anything until she brought me some water. And on our way home at 10:30, she bought me In 'n Out. I would have passed out without her.

Here are some pictures that my friend, and art contributor, Chris Battle took. You can see how packed it was!

THANK YOU ALL!!!! AMY

Art on the Walls!

2008-01-19T08:27:00.000-08:00

Tonight is the opening reception for 4 Soren, Soren's art show fundraiser. The folks at Monkeyhouse were up until after 2:00 am hanging the art. Later today, images should be available on their website after everyone has gotten some sleep!

But here are the images from afar on the walls. The pieces are all amazing! Check them out!

Read the post below for information on the show! I hope to see all of you there!

Amy

4 Soren

2008-01-07T14:05:00.001-08:00

Hey Everyone!

This is the flyer for Soren’s next fundraiser in less than 2 weeks, on January 19th! Now, this fundraiser is a little different then ones in the past. This time we need help to make our mini-van wheelchair accessible. Sadly, insurance does not help pay for this. The state covers one third (if we're lucky). And it is a costly venture. But we've now faced the reality that it is a necessity for Soren—and us!

So we are raising funds for this project by having an art show at Monkeyhouse Toys & Art Gallery. Saturday the 19th will be the opening reception from 5-9 pm. There will be food provided by Trader Joe's. There will be wine provided by someone who makes awesome wine (I'm still working on that). There will be a kickin' DJ. And there will be amazing ART of all kinds!

Over 40 amazing artists have contributed their art on Soren’s behalf. Some additional artists that didn't make the flyer are Cynthia Ignacio, Shellie Kvilvang, Shellaine Corwell, and Joe Strasser. There will be original paintings, prints, photographs, dolls, and jewelry at a variety of prices!

For those of you unable to attend, the art will be for sale by the 19th on the Monkeyhouse website at

Monkeyhouse Toys

Or if you don’t want to buy art and just want to donate, you can contribute to

Soren's Fund

Thank you all for your wonderful support. We hope to see you on the 19th!

Amy & Aaron

DR 5: The Trip Home

2008-01-03T13:43:00.000-08:00

First of all, you'll be glad to know that Soren is doing great today. Happy, eating, happy while eating, kicking his legs and making lots of noise. We're happy to have him back to his old self.

Now, on to the final leg of our journey. This picture about sums up our trip from La Romana to Miami.

Due to storms, our plane was 2 hours late. The drag was that our taxi showed up on time, there was no line to check in at the airport, we got through security without issue (though they made me take Soren out of his chair which defeats the purpose in my book), and passed through immigration. We thought the flight was on time (there are no monitors to check this). That is until I went to get my Nathan's hot dog and spoke to another passenger. Oh well.

Rather than have Soren sit in his chair for 2 hours before having to sit in his chair another 2 hours, we let him stretch out. And when it came time for food, we had our usual supply for him at the ready.

I don't think I've mentioned that we always carry a cooler full of Soren's food with us--eggs, squash, yams, avocados, and of course, milk. And man, having that food has come in handy on every leg. So this poor food had been across the country, come into a foreign country, and was on it's way back, though the load kept getting lighter.

Before finally taking off, Soren pooped and I went to change this diaper. Now this was an interesting experience because there are bathroom attendants at the ready to hand you a towel after you've washed your hands. One of the women followed me in when she saw me carrying Soren (always an amusing visual due to my short stature and his increasing length). She pulled down the diaper deck, covered it with towels, I put Soren down and began the clean up process. Once he was changed, I went to pull up his pants but the attendant, trying to help me, pulled Soren up to stand him on the deck.

Well, with Mr. Jelly Legs, this simply didn't work. I caught him on my shoulder and hoisted his pants up, trying to explain that he doesn't stand, though I had no idea how to say this in Spanish.

We boarded and had a slightly turbulent flight. Once we landed, we ended up sitting on the tarmak for about 15 minutes, much to the annoyance of the pilot. I don't think I've ever heard a pilot actually express annoyance at that, but he was clearly peeved. Since we always board last, we ended up meeting him on our way out. He was very kind and, as we were loading Soren up, commented that his fiance also has a child with special needs. Funny how we end up talking with folks we never would have because of Soren.

After collapsing in Miami for the night, we got up to do the whole thing again the next morning, this time finally heading home. Miami Airport was packed more than usual. I actually had to play the disabled card to get us checked in and out of the heat (which honestly is bad for Soren).

Then off to security. As I mentioned before, Miami has a well-marked disabled access line. We got in it and were going to be the next through when a band (I have no idea who) came through. Clearly being cool rockers outranks being disabled, so the whole crew got to go through before us. Actually, despite their tough guy looks, they were super sweet guys who were appreciative of getting such nice treatment.

We ended up at the gate with only 15 minutes to spare. Rather shocking considering we got there 2 hours before. If we hadn't gotten our disabled access, we may have missed our flight! I was smart enough not to warm up any milk this time 'round.

Our flight was on time and the only thing of note was that Soren pooped again. I only mention this, not because I think you all care about Soren's efficient bowel activity, but because changing Soren on a plane is a sight to be seen (not that you actually want to see it). We were lucky that he hadn't done this on any of the other legs. But there was no getting around it this time. So I picked up Soren, Aaron grabbed the diaper bag, and we headed to the bathroom.

Now, you know how small those bathrooms are. And if you've ever changed a child, you know that the diaper deck is big enough for a 2 year old at best. So imagine trying to fit a long-legged 4 year old on the deck and then try to get business done. I was calling orders out to Aaron like a surgeon to a nurse. "Wipes!" "Bag!" "Diaper!" "More Wipes!" Fortunately we didn't hit any bumps!

So back to L.A., everyone safe and sound, though a little worse for wear.

That's it for DR 5. Rogers out!

Amy

1/1/08

2008-01-02T09:06:00.000-08:00

Yesterday continued to be rough. After Soren's 3rd tonic-clonic, he had an Absence seizure. He then had one more 90 second tonic-clonic.

Fearing that if this continued, we would end up in the ER, I paged the pediatric-neurologist on call to see if I could give Soren a second (and more potent) dose of Diastat.

And I've got to say, the team at UCLA is really great about getting back to us. The doctor on call called back in 15 minutes. I told her the situation and she set up a whole plan for me. We were to increase Soren's morning dose of Zonegran 25 mgs. Since it was now 4:00 and the morning dose was clearly past, she said to get this into him before his evening dose. After getting that in him, I was to give him Diastat before Soren had another seizure to stop the cycle. Once he'd recovered from being knocked out by the Diastat, I was to get his evening dose of meds in.

All this went very smoothly. The only rough part for me was when Soren woke up from the Diastat for his dinner. He was understandably shaky from the Valium (that's what Diastat is). He couldn't hold his head up straight as I was feeding him. Seeing him this way was just too much for me after this lousy day, so I lost it.

Now I know I reported my breaking down on our DR trip. And now I'm reporting it again. But I just want you to know that this is not the norm. I usually keep it together pretty darn well. But seeing Soren in this state reminded me of the days when he couldn't hold up his head and was so drugged up he couldn't eat. It made me realize how much progress he'd made and the thought of going backwards was just too much for me.

So I was balling as Aaron held Soren's head up and I fed him. He ended up eating very well, all things considered. I decided I wanted to sleep with Soren, so we set up the fold out couch for us. But that didn't last long because, thanks to the Diastat, Soren was back to his old self (YAY!) and started talking and kicking through the night (trying to make up for inactivity during the day, I guess).

At midnight I gave up and went back to my bed, where we could still hear Soren easily in an emergency. This morning, he woke up his usual chipper self. The shakes are gone and he can hold up his head again. We gave him the day off from school, figuring his body has to be exhausted from all that seizing and all those drugs.

I know mine is.

Amy

Rough Start to A New Year

2008-01-01T13:46:00.000-08:00

I'm taking another break before writing the final leg of our DR trip to wish you all a Happy New Year.

We had fun stuff planned today. Start with some yoga, clean up the family, and then head out to see Water Horse.

But after yoga, I went to get Soren out of bed and he had some froth at the side of his mouth and he looked very drifty eyed. Clearly I had just missed a seizure. He slept and I checked him about an hour later-just as he was having another seizure. Aaron and I took action and gave Soren Diastat. This knocked him out until around 11:30, when we got him up for some milk and lunch.

With Soren's seizures, we decided a change of plans was in order, so Aaron and Mo headed off to the movie together while Soren and I hung home. I got most of his milk and food into him. But on his last bite, I noticed Soren's eyes were flicking to the left, which sometimes happens pre-seizure.

Sure enough, he went into another full-blown 90 second tonic-clonic. This was very frustrating since we'd already done the Diastat and you can only give that about once a week. Ugh.

The sad thing is, Soren hadn't had a seizure since December 19th. He'd been happy, social, having a great vacation. So for him to be hit so hard the day before school starts up again is very depressing.

Not the best way to start off the new year. But then, tomorrow is another day.

Amy

DR 5: Stem Cell Treatment

2007-12-27T15:38:00.000-08:00

Back to my long-winded story. We woke up on Friday morning for Soren's treatment. We were supposed to be picked up at 10:30, so we cleaned up, had breakfast, and went to the lobby to wait for our driver.

While the kids and I waited, Aaron went to the room to warm up milk for Soren (that darn milk). Now, to do this, we have to heat the purified water in the little coffee pot provided. The coffee pot was not behaving well, spilling water everywhere. So, thinking he was running late, Aaron came to the lobby with lukewarm milk. As I mentioned before, Soren is particular about his milk temp.

By now our ride was 30 minutes late, so we turned on my phone to see if there were any messages. Well, we should have done this the day before, because our appointment had been changed, but my phone had died, so I didn't get it. Oops!

With more time on our hands, we returned to our room, heated the milk more, and got it into Soren before our new pick-up time. For the first time, all of us went to the clinic. Last time, Aaron came with me while Mo was at the hotel with her grandparents. But we needed Aaron's strength to help hold Soren down who, now that he's gotten strong with these treatments, resists getting the shots!

So in we all piled and had another E-ticket ride back into town to the clinic in La Romana. A storm came in just as we were getting unloaded, dodging the warm rain as we ran in. Dr. Rader and his wife welcomed us warmly. It was great to see them again.

We got into our room, but things were running really late. Some of our friends were in the next room, so we got to visit. And we came prepared with snacks and our DVD player. Here are the kids waiting patiently.

Once it was our turn, everything went as smooth as silk. The nurse who did Soren's IV did a great job. Here he is with his IV in waiting for his stem cells.

Soren wasn't happy with the shots in his leg. (Sorry, no photos of that. All hands were on deck.) Aaron and I were able to hold him down. As soon as we were finished, a car was waiting and we had another exciting ride back.

We ended up finishing the same time as our friends and arrived back at the hotel for some much-needed, inclusive libations and pizza!

Last up, our return trip to Miami and LA!

Amy