Less talking, more doing.

I have a new motto for this year. It wasn't really a resolution because stating a resolution out loud is actually counterproductive to this year's motto.

LESS TALKING, MORE DOING.

Which leads me to ISR.

ISR stands for Infant Swim Resource (http://www.infantswim.com/). Lola has been participating in this program since she first learned to float at six months old. It was a gift. Lola has since learned to save herself should she ever fall in the water, no matter what barrier fails, no matter who's supervision she is under - I'm confident she can save herself because of ISR.

Last year, while at one of her lessons, I mentioned out loud - you know, that whole talking thing - that I wanted to help get ISR lessons for just one little boy. Not one in particular, just any two year old little boy. Two year old little boys are the largest demographic for childhood drownings. And Christian is a little boy, so, naturally, that is where my heart is.

Fast forward to this year, the year of less talking, more doing. With the impending heat of summer, I was trying to think of a way I could raise money to send at least one little boy to ISR. I thought of another online auction, bake sales, Scentsy fundraisers, Tupperware parties, I didn't know I just knew I wanted to stop talking about doing something and actually DO SOMETHING!

I also didn't know how to go about finding this little boy. I didn't want to violate any policies that ISR might have so I wrote them an email telling them about Christian and what I wanted to do.

Long story short, ISR presented us the opportunity to work with them and Crossfit Kids to make a video that will be on the ISR website, the Crossfit Kids website, and of course my little blog and anywhere else we want to put it. The video will be the fundraiser. The fundraiser will create scholarships for children to attend ISR sessions without cost being an issue. The video will be a tribute to Christian's life before and after his near drowning and it will also show Lola and her ISR skills!

Sterling's Story is an example of how the video will be done. I'm warning you now, if you watch it, you WILL need tissues.

This week has been kind of an out of body experience for me. I'm still soaking in the ripple effect this might have. My little goal was just to help one little boy, and now we have the possibility of helping more children.

So why do I feel compelled to do this? Among many other reasons of which I will elaborate in future posts, so many people have helped us along the way and I had no idea how I was going to pay them back. I'm even bad at thank you notes! But this? This is a way to pay it forward.

It's all part of that less talking, more doing thing.

Mustache style.

Something is brewing! Something exciting!

And I can't wait to tell you all about it...

But against my instinct to tell everyone, I must hold it in until the details are ironed out. Let me just say I'm blogging on the eve of a very important and busy week that will, hopefully, lead to a small dream of mine coming to fruition.

Stay tuned...

In the mean time I'll leave you with some fun photos from Saturday's therapy. Christian has been visiting the Mariposa Therapy center on Saturdays and they have tons of neat swings, hammocks, inflatable pillows, ball pits, and other fun contraptions.

Over all, the cocoon swing makes him weak in the knees, literally.

This is a picture of him inside the swing.

This is a picture from the outside.

I think he feels all wrapped up and cozy in it. So he rarely ever complains about going in.

Christian's PT also likes to use kinesio tape to help with things like his mouth closure, external rotation of his legs, and strengthening his abdominal muscles. I'm not going to act like I know how it works. I get it, visually, but can't quite explain how it works. But it works, I believe. I definitely think it helps with his mouth closure and his external rotation.

So his PT decided to jazz it up and do kinesio tape, mustache style.

He's just too handsome, I can't even stand it!

Thoughts and prayers appreciated for what we've got in the works. Can't wait to spill!

Peace.

We've been home for less than a week after our hospital stay and things have been pretty calm. The last night of our stay we decided to start a new drug called Clobazam The first night registered no seizures on the EEG, which was a big surprise to me! That's pretty much unheard of around these parts.

The first day he was on the medication he had a few seizures, maybe five or so. And that's been consistent every day since, but it's probably more like ten seizures a day. He seems to get them in clusters like his old seizures. It's funny because it almost seems like his old seizures have been replaced by these new tonic-clonic seizures. Or maybe they are the same seizures, they're just changing with time.

He is, however, not having seizures right after getting his evening medication dose. We give it to him in the evening because our primary issue right now is managing Christian's evenings. I've mentioned it several times that it is extremely difficult on all of us, including Christian, when he is inconsolable. Priority number one is getting that under control.

I'm happy to say that Clobazam has been successful in calming Christian in the evenings. It allows him to chill out and fall asleep. He has so far had easier days, less agitation, and an easier time relaxing. The best part about this is it hasn't really compromised his daytime manner. He doesn't seem any less alert or any more lethargic, which was a big concern of mine. He is, obviously, lethargic right after he gets the med but that may change, in fact all of this may change, as he gets used to the new medication. Hopefully, our new peaceful evenings won't change. We like those.

The prescription does call for us to increase the dose after a week to twice a day instead of once a day. I'm trying to figure that out because I don't want him lethargic and sleepy for school. Not sure how to proceed with that.

But for now, Christian seems a little more peaceful. And a little more vocal, interestingly enough. The seizures are secondary. If we can make sure he is comfortable and happy in the evenings, mission accomplished.

Now, shhhhh...babies are sleeping.

Peace.

No, that's not a rug snuggled up to Christian. That's our dog, Ruby.

EEG Report Findings

Blogging from hospital land tonight. We thought we might be able to bust out today, but, alas, we've decided to stay another twenty four hours.



It's definitely not that Christian didn't perform by showing off his seizure talents. Oh, he performed. I knew he would. These new seizures are hard and they happen about 10-15 times a day. They seem to get a little longer with each one. His face gets red and he starts breathing faster, as noted by the respiration alarm that goes off mid seizure after he exceeds the normal limit.

We got the results from the EEG over the last thirty six hours or so. I actually find them very interesting and very telling. So here goes.

He is experiencing classic tonic-clonic seizures. That's obvious by the looks of things. But, in addition, for the first time I got some further information about his EEG patterns. Christian's EEG is abnormal. I know this and I know that aside from Divine intervention, this will be his brain for the rest of his life. It just is. But what's fascinating is that he has slow brain waves, he gets a sharp spike at the onset of a seizure, then the waves go flat, then they enter into "normal" range while the seizure is still happening. After the seizure they settle back down into his regular abnormal, slow waves.

I've always kind of believed that seizures are the injured brain's way of trying to make connections and misfiring. During some of Christian's seizures, we've witnessed a clarity fall over him. I saw his first attempts at smiling during a short seizure. And during these new larger ones, he's been vocalizing, almost yelling through the duration of the seizure.

Now, neurologists may argue this means nothing other than that Christian has a severely abnormal brain pattern (not our neurologists, the one who read the EEG actually thought it was quite interesting). But I think this EEG just proves what we've thought all along - that some of these seizures are his brain's way of making connections, no matter how abnormally it's done.

Furthermore, and this is just a Momma's speculation, but I think the Ambien brought on these new, more intense seizures because it was too much for Christian's brain to handle. It was waking too much up at once maybe?

And then Christian's brain was like - I can't handle this! I'm wiggin' out, Bro!

And then Christian was all - Let's get it together, Brain. Not cool, Dude. Not cool.

This is what a hospitalization in isolation from my normal life does to me. I think Christian and his brain are having conversations.

Anyway, I'm so glad we have the team of neurologists and epileptologists working with us. They are so cool, so thorough, so accessible, so...un-neurologist like.

Despite these findings and our previous decision not to medicate, we are going to try Clobazam. These new seizures are just too hard on Christian and I fear they could get even more intense. I know when to fold. Besides that, we still need to address Christian's evening time freak outs. And we're hoping the Clobazam will kill two birds with one stone, being that it's in the Valium family. I'm hoping it will calm him, at the very least.

So here's to another day in the hospital! Yipeee! Momma, Christian, and Christian's brain signing off.

Bunnies

Easter has landed. And we had a good one.

With our hospital stay coming up this week, I was bound and determined to have a solid, family centered Easter! And that means continuing our family tradition of Easter baskets on Easter Sunday morning!

I thought the super soft, stuffed bunnies that are almost as big as Lola and Christian might be a little overboard. But then I thought about our impending hospital stay and how this type of life is guaranteed to have highs and lows and a lot of crap we have to deal with, especially Christian. Overboard? Ppppssshhh!

The bunnies were coming home with me.

And the Easter bunny promptly delivered the bunnies to two very deserving children.

 

 

The bunnies were a better idea than I thought! They are big enough for snuggling, Lola used hers as a blanket when she fell asleep in the living room, and it's a great tool for positioning with Christian. Bonus!

And, no, I didn't forget Gabe! He got a big kid "basket."

As I mentioned, baskets are a tradition. And I really try hard to make them as personalized as possible, including a lot of my kids'/husband's faves. You'll also notice in each basket is a toothbrush. That's a family tradition, too.

Speaking of personalization, it can be a little more challenging looking for basket goodies for Christian. But then I remembered to think simple and it was easier than I thought.

Christian got two books, one is Spongebob and one is about Oscar the Grouch. I thought it was fitting since Christian can be such a grouch and it's a textured book. He also got a squishy, rubber snake, a bright, yellow dinosaur, and new pinwheel. He got some cool sensory toys, one of which does not appear in this picture because little sister already swiped it. He also got the traditional toothbrush (it vibrates, more sensory!), and a chocolate bunny. I'm totally putting it in his blend.

But what's more sensory stimulating than that awful plastic grass?! It's not an Easter basket if you don't have messy, plastic grass that you're picking out of the carpet for months, right?!

Ahh, tradition.

I hope everyone had a wonderful Easter! We're getting ready for our very first hospital stay.

And bunny is coming with us.

This time next week.

A few randoms...

First, I'll start with my gratitude for how much support and kind words you all give to our family from near and far. I read every comment, every email, and I appreciate every thought and prayer you send up for us.

Second, I met someone today! It was another mom of a special little girl who is joining Christian's preschool class! Christian is the only child who uses a wheelchair in his classroom but not anymore! He has a buddy now. I spotted her from far away, as I have now gained special needs radar. And, of course, I tracked them down, introduced myself and insisted we be best friends and have play dates as I do with all moms I see with special kids. Not really, but kind of. I did introduce myself. I did track her down. And maybe I suggested a play date, but that's all I'm admitting to.

Third, speaking of school...Christian decided to straighten his arms out, probably because of a startle, which led to him knocking the tray up so that it hit him in the face. Thus, resulting in a bloody lip. First fight at school. With his tray. Awesome. It was probably because he was distracted by the new girl.

Fourth, and this one is the biggie, this time next week we will be admitted to UMC for Christian's first inpatient stay since coming home from the hospital. We've been lucky enough to avoid any type of hospital stay for anything. This is a first. Why are we planning a stay at UMC? Well, ever since the introduction of Ambien, unfortunately we've witnessed a new seizure. I've been pretty lax about the seizure situation for a while, deciding that the VNS implant was giving us enough control and his daily spasms were not troublesome. Then we decided to introduce Ambien. And quickly after we noticed some harder, longer seizures that looked different than anything we had seen before. They didn't go away after we stopped the Ambien.

Now they are a daily occurrence. They happen several times a day. He jerks his arms out with force (which may have been what contributed to his bloody lip today), turns to his side and starts breathing really fast. It lasts from 5-10 seconds. I've used the magnet to swipe over his VNS in order to stop the seizure and it works in shortening them but it doesn't prevent the next one from happening. The thing that scares me the most is the breathing. I don't mess around with that. So it's time to take action.

Because this is a new kind of seizure, his new neurologist wants to monitor him for three to five days inpatient. So that means we have to be admitted to the hospital. I really don't think we'll be staying even three days because Christian will give them enough date in a day's time. Needless to say, I'm hoping for a less than 48 hour stay. I'm glad this monitoring is happening because we haven't done an EEG for over a year and this will be an opportunity for the new doctor to look at an up to date EEG and figure out a plan of action. I'm hoping he won't give me a laundry list of medications to start him on.

I'm trying to think positive. Fresh eyes, fresh prospective. I really just want back the Christian I had before we decided to try Ambien. Live and learn.