Seeing Sea World!

We took a family road trip over the weekend to visit Sea World and we had a blast!

Thinking about our trip, I realized that not once did we have to worry about accessibility. We were able to easily navigate the entire park without a single set back. The weather was a teeny tiny bit cool, but otherwise perfect.

One of the great things about Sea World is that they have an entire area completely dedicated to busying little ones. It is perfect for expending the energy of a little girl so she could sit semi-nicely while watching the Elmo 4-D show.

She loved it!

Christian really enjoyed himself, too. How could we tell? Well, he hardly made a whine, cry, or contesting peep the entire day! And he didn't take his regularly scheduled nap! There was just too much to take in and he was quite content in just hanging out and taking everything in.

Lola got to meet her buddies Elmo and Telly from Sesame Street. She was unsure at first, but quickly warmed up when Elmo tickled her under her chin.

My big kid enjoyed himself, too. Of course, in the coolest, most nonchalant way possible.

We got to enjoy these gorgeous creatures up close...

...and these very scary creatures.

I don't care how old you are, the Shamu show takes the cake, seriously. It's amazing. It's just as amazing as it was when I was eight years old.

Num num num.

My favorite part is when Shamu poses on his platform and everyone stands up and takes a picture in simultaneous amazement.

While watching the show, I was thinking about how I was so excited to bring my kids to Sea World. It's kind of a gift for them but it's really a gift to me. The experience of seeing my kids watching Shamu for the first time is this moment I want to bottle up and keep forever. Having kids and creating memories is the. best. ever. They make things so much more fun!

Sea World is really a great place for kids with special needs. It's very accessible, it's really relaxed and we didn't feel a rush to do anything in particular than just be in the moment. There is a ton of sensory exploration, but it's serene and calm so there's no overload.

So much to see!

Adventures in Ambien

Last I updated, we were about to fill our prescription of Ambien (Zolpidem).

The prescription was filled last Friday, and we had lift off.

We started with the lowest dosage, 2.5mg at around 5:30PM because the primary reason for the Ambien trial was for sleep. This time of day is when the "whineys" come out so naturally it's when Christian would need help falling asleep.

About a half hour after I gave him the Ambien I immediately noticed that he was more alert. He wasn't fussing much at all, but he had a lot of tone and was trying to arch a lot. This happens when he's trying to move sometimes and it used to happen a lot more closer to the time of the accident and again when we were weaning him off baclofen.

The alertness lasted about two hours and then he was calm again and ready to go to bed. Night one on Ambien was a bust in the sleeping department. At that point I still questioned whether it was the Ambien that made Christian act differently or just a fluke.

The second evening we gave Christian the same amount at the same time and the same thing happened. He was much more alert, he was turning his head from side to side (which isn't all that normal for Christian because he can't get stuck to the left), moving his hands, and I was sure it was because of the Ambien.

By Sunday (yesterday) it was evident that the pendulum that is Ambien was not going to swing toward the sleep option for Christian. It is definitely a brain stimulant for him. So I questioned whether we should be giving it to him in the evening when he's supposed to be winding down. We did have room to increase the dosage to 5mg so we decided to do that to see if that would induce some type of sleep. (This amount came with permission from his neurologist). Maybe the dosage wasn't enough. So we tried the full tablet of 5mg last night and, boy, was that an experience.

Christian was on brain overload. He was completely flexed but moving his hands pretty much nonstop. Laying down he was moving his head back and forth from side to side. He wasn't fussing that much but there was a moment when I had him in the kitchen with me while I was making dinner. Lola pushed him in his chair over to the counter so she could crawl up and "help" me cook. I grabbed her and told her she had to get out of the kitchen and then as I pushed Christian away from the counter I said, "That means you, too!" In response he proceeded to give me a look with an expression I'd never seen him make before as he grunted at me in a sound I've also never heard him make.

He was also using so much tone, when I put him on his elbows in prone position he used his tone and extension to arch and roll his way over to his back again and again, and quicker than ever, too.

But it was just too much for him. It was too much on his little brain, I believe. He was so stimulated, I actually got a little nervous about it, because one cheek started to flush. It was like it amplified his brain's disorganization. Every move he made was more constant, more frequent, but he couldn't make sense of it or put it together.

Luckily, Ambien has a short lifespan - maybe a two hour window. It's meant to put someone to sleep so it doesn't last a long time. Which is good in this instance because when it was too much for him, it only lasted a little while and then he eased back into regular Christian without a hiccup. And the funny thing is that it made him so alert that it actually ended up wearing him out and allowing him to sleep! Round about consequences, I guess.

So tonight I went back to the original lower dosage and he handled that fine. He was still alert and moving all over. He vocalizes a lot more, too, and in a slightly different tone than I've heard him before. Since giving it to him I've seen a lot more of his little half smiles and that has happened while on the Ambien but mostly in between doses. And right after he eased back into regular Christian, he fell asleep.

I can say without a doubt Ambien is a stimulant and causes an opposite effect on Christian's brain than what it is intended for. We're going to stick with it and see if we can put it to use but I'm contemplating giving it to him in the morning so he can get some use out of it at school. I know it's not hurting him because he would whine and cry through the whole thing if it were any bit uncomfortable. He tolerates it really well.

Ambien is sticking around and our adventure with it continues...

Finding the better.

Christian is getting Ambien. 

And why Ambien could potentially be such a big deal can be found in this article.

I just wanted to go ahead and put it out there because I tried to tell the story twice with all of my thoughts and analysis and play by play. I told it once to my mother and once to my husband and the consensus was: Get to the point already!

So I did. Now comes all my thoughts, analysis, and play by play.

Today we had a neurology appointment. And even though my first instinct is to dread this type of appointment, it isn't so dreadful anymore, honestly. I actually kind of look forward to them because we have a new neurologist and we increase and tweak his VNS every time we go, which always brings good things.

But for today's meeting I had three new issues I wanted to discuss:

1) Clobazam: This is a new seizure drug we are considering. It's newly approved by the FDA and has the same affect as Valium minus the sedation. Sounds good to me, but I'm always skeptical about introducing new drugs. Especially when Christian is making progress and doing well. So why try it? Well...to find the better, right? Gah! See my predicament. It's a crap shoot.

2) Christian's Evenings: I think I've mentioned this before, but I'm not sure how much I've elaborated about the extent of Christian's irritability in the evenings. He gets fussy and wants to be held around 4PM most days. This turns into crying and then only calming if I hold him. And often this can also snowball into a sobbing, inconsolable Christian. It's leading up to bed time and it's as if he just cannot fall asleep. He doesn't seem to be in pain because if he was, he'd wince or stiffen up. He just sobs and cries - red face, tears, moaning, just sobbing. It can go on for hours. And we have nothing to help him except our Christian cocktail: Melatonin and Ibuprofen. Sometimes it works. Sometimes it doesn't. And I'll tell you what, it's a mind-rhymes with duck. I don't have a better word. Because that's just what it is. It is mentally, emotionally, and physically exhausting. So, yeah, I wanted to discuss a solution to this.

3) Ambien: Read the article linked above to get the full explanation. But basically it has the potential to wake up the brain. We've tried another stimulant called Amantadine about a year and half ago. For the first day after Christian tried it he would get really alert but then after the first day he would get really irritable, almost overstimulated. So we stopped. Ambien is controversial and I've known about it for a while. There aren't a lot of domestic studies about it's use, but there are some miraculous results. I know better than to think this is any kind of cure. But it doesn't hurt to try. You know...to find the better. I've heard of a lot of doctors refusing to prescribe Ambien to children. I brought it to our ex-neuro and he knew nothing about the brain injury studies or cases. Shocker.

So this is how it went down. I mentioned Christian's evening episodes first, because, to be 100% honest, that's the whole reason I'm interested in the Clobazam in the first place. We can live with these little seizures. We've learned to. They're part of him, they don't really get in his way, I don't think. I really just wanted something to give him so that he will chill. the. hell. out. in the evenings. And being in the Valium family, it sounded perfect.

So the doctor asked me if it was a problem falling asleep. I've always thought that had something to do with it! It's like he just can't fall asleep. And then once he finally does, he's out for most the night. And he wakes up fine in the morning like nothing ever happened. So the doctor started talking about sleeping aides. That's when he said it.

Ambien.

Amba-what? Did he just say what I think he said? 

He did. Totally unprovoked by me. I hadn't even mentioned it yet. So I got excited.

Ambien is a sleep aid. But it has been found to have the opposite affect on the brain injured, the comatose, and patients in a vegetative state (lovely). 

So I casually mention to him those stories I've read about it "awakening" those who need "awakenings." 

He said that, yes, he knew about those. He also mentioned there haven't been a lot of controlled studies on it's use and that it has been more effective on those who are actually comatose, not those already awake. But that we could try it for both - his sleeplessness or to wake up his noggin. Two birds, one stone. Oh, I love me some two birds, one stone action.

We also agreed that we would put the Clobazam on hold until we knew if the Ambien was doing anything. He said he didn't think it would be a good idea to start him on two meds at the same time. You took the words right out of my mouth, Doc!

So this appointment went too well. No struggle? No begging? No frustration? What is going on around here!? I think we've hit neurologist gold with this one.

I called the pharmacy to see if they had the prescription and the pharmacist took the liberty of putting it aside so she could call the doctor to make sure this is what he meant because it's not usually given to kids under the age of six. I wasn't going to argue with her after business hours. But I assured her Ambien is what he meant and thanked her for her concern and follow up. It had gone so easily so far, of course we'd have some type of hiccup.

We're starting out with 2.5 mg to 5 mg per day in the evenings, since our main intent was to calm him in the evening. If it does make him sleepy, I don't want to give it to him in the morning.

Now, my disclaimer is that I understand this may or may not "wake up" Christian. I understand it may not do anything. I've learned by now that someone else's miracle may not be Christian's and I'm at peace with that. So I have an open mind and a guarded heart with this new experiment. It will do one of three things - nothing (I can live with that, it won't be the first time), help him fall asleep, or help him cognitively. 

It's all about finding the better.

Spread the love.

So when I hear that we can hand out Valentine's in Christian's preschool class, you know I'm all over it.

And then when I found out one of my favorite sites, http://www.3elove.com/, had Valentine's cards available, it was a match made in heaven.

We are ready for Valentine's Day! And you better believe that I was exponentially grateful and aware with each piece of tape I used to attach every cherry, red heart sucker I loved when I was a kid.

I also really like the idea of parents celebrating with their kids. I speak from experience as I was lucky enough to have a mom and dad that both acknowledge me on Valentine's Day and looking back, it's something I want to pass along to my kids. Of course I tell them I love them an excessive amount of times per day, but on Valentine's Day, it's just another excuse to show them.

So I baked, because that's just what I do these day. I made Gabe a batch of chocolate chip cookie dough truffles (amahhhzing recipe found here). Gabe has already had a sampling and told me it was the best Valentine's Day gift ever. Score.

And Christian and Lola got some crazy Sing-a-ma-jigs.

 Yes, they're weird. And I'm not sure I quite understand them. But here's the thing...Christian's speech therapist came to the house one day and was trying to get Christian's interest with a few toys and he wasn't biting. But then she pulled out the Sing-a-ma-jig and I thought - yeah, right, Christian isn't going to like that thing. And then he promptly proved me wrong.

You press their tummies and they "sing" in funny voices as their mouths move. I don't know what it is but the boy is interested. And because the boy has one, the girl must have one, too.

Happy Valentine's Day!

Spread the love.

Cinnamon Bread

We live in our own little world of normal. We have a routine, Christian has therapists that come to the home and upon the foundation that is our home and between the parameters of our day to day, we've created a nest. This nest is safe and our version of normal.

It's not until we leave the nest that we are abruptly notified that we live an entirely different normal than everyone else. People stare, which doesn't bother me because they're just curious. It just reminds me that it isn't a "normal" site to see a three year old (who looks like he's five) in a wheelchair.

What? Your three year old doesn't ride around in a wheelchair?! Walking is for the birds!

Not serious. But that's kind of what it feels like when we leave the nest.

One time we were at a birthday party at a pizza place and I was holding Christian on my lap. An entire family - Dad, Mom, like five kids, maybe a grandfather - stared over at Christian while eating their pizza in slow motion. I wasn't exactly offended by it. I'm not offended or bothered by staring. Because it isn't often that someone is staring in disgust. They're staring out of a lack of understanding. And they want to understand what they're seeing. So they take it in, piece by piece, wondering if he's okay, if we're okay.

I don't take offense to this. I really don't. A part of me feels sorry for them and I want to help them understand. I don't want them to feel bad or sad or confused. I want them to know that he's okay. We're okay.

The family at the pizza place eating pizza in slow motion while staring at Christian? After a few minutes of taking Christian in, the man who I assume was the dad looked at me with urgency and said, "Does he want any cinnamon bread? He can have some! We have plenty! Does he want something to eat? He can have some of ours. Really. He can have some. We have plenty! Take some!"

He practically insisted we take his cinnamon bread. We didn't. I assured him that Christian was okay but I was half afraid he'd bring it over and try to feed it to him! It just goes to show you, they just wanted to understand. And they couldn't. So the only thing they could do to make sense of it all is offer cinnamon bread.

Christian has also made a little nest of his own at school. I cannot explain how pleased I am with his experience in his new classroom. Every morning, it seems everyone is happy to see him. He has a little friend who always greets him right away. His friend saw me walking in to get him and pointed to me. He yelled, "Christian!" as he pointed. I said, "Yes! I'm Christian's mom!"

The fifth graders also spend time in the preschool class and apparently a little girl has taken a liking to spending time with Christian. I don't blame her. I mean how could you not love him. I'm not biased at all.

We are leaving at the same time the fifth graders are taking their lunch. As we're leaving, the fifth grade teacher and his whole class says hi and goodbye. I feel like he belongs. I feel like he's welcome and he has a place. It's part of his nest.

The best part about all of this is that, although we're comfortable where we've built our little nests - at home or at school - it's when we're faced with not so comfortable situations that we have the opportunity to teach. My hope is that Christian inspires understanding and teaches tolerance for those unlike ourselves. Maybe he'll inspire a questioning of what makes us uncomfortable. And instead of responding with negativity, maybe Christian will teach to respond with love, a hi and goodbye.

Or maybe some cinnamon bread.

The Tribe: A Mini Reunion

Mini Tribe Reunion!

And by "tribe" I mean the Near Drown Tribe. That's what we call ourselves. We have shirts and everything.

These are our babies. Although they don't look very much like babies. They are, in fact, giant babies.

Our boys.

(l-r: Christian, Seth, Santana, Joey)

A few of the tribe members were in Phoenix for therapy and one actually lives there. I live about an hour and half away so we all decided to meet and have a mini-reunion at Rainforest Cafe!

And we were rolling pretty deep with our crew. And I mean that in the most literal sense.

We also made our kids try on hats. Because, rumor has it that's what the crazy tribe members do.

Santana

Joey

They are so over this.

"No, really, Mom. I'm over this."

It was so...rejuvenating. Not rejuvenating like a facial or a massage. It was rejuvenating being surrounded by everyone and their kids. We rolled right on into that restaurant and felt like regular moms with regular kids. We were just moms with our boys. It's what normal feels like.

We also talked about how we missed our absent tribe members and can't wait to see them again soon.

This tribe of women is amazing and they are such a gift to me and they don't even know it.