Viga-whaaa?

Vigabatrin.

We've decided to go ahead with it. Yes, it's a very strong seizure drug and, yes, it's biggest and most serious side effect is possible tunnel vision, but this is a game of "would you rather." And we get to play it. Awesome.

I'm pretty sure my friend, Jenny, coined the phrase. It's like we're always playing a game of "would you rather." And this time our topic is "Would you rather have a child that could possibly loose some of his vision OR suffer from serious infantile spasms that could delay progress, cause even more damage, and/or cause regression?"

I think we'll take our chances with the vision.

Besides, I've received many supportive emails from other Mama Bear friends who've told me about their bear cubs taking Vigabatrin. Nobody reported any vision side effects. Of course, most of our baby bears are already compromised in ability so it's hard to tell. (And I am so appreciative for all of your advice, support, emails, and comments. I am totally not alone in this and there are, unfortunately, more members in this club than I imagined.)

I spoke to both neurologists that I'm dealing with (long story full of details that are unimportant), and after weighing all the options, Vigabatrin seems to be the best bet. See, Infantile Spasms is serious. It's treated as an "acute condition" according to one of the neuros. We are choosing Vigabatrin first because we will know right away whether it works or not. Cool. No drawn out titrating of meds to see what levels effect him and when. Let's just get on with it, shall we?

And, if Vigabatrin isn't our deal, then we're gonna get all Keto up in here. Ketogenic diet, that is. One of the neuros actually suggested it and I have this nagging feeling that if Vigabatrin isn't our friend, Keto will be.

We start Vigabatrin tomorrow.

And, for the record, I've weaned Christian completely off of Keppra over the last month or so without the neuro's blessing because of that darn nagging gut feeling telling me at the very least it wasn't working. Even more so, I had that same nagging feeling that it may be causing these things. His jerks, spasms, seizure-like activity is down, mmmm....about 75%.

The neuro actually suggested that this recent EEG may have been so disorganized because I had decreased his Keppra and Keppra is known to cause such dramatic changes in EEG's. I politely told him that I purposely did NOT start reducing his Keppra until after the 24 EEG was completed because I knew it would effect the EEG. I'm not stupid. In fact, during his 24 EEG, he was on twice the amount of Keppra as he was for the previous EEG. I'm no expert but that nagging feeling leads me to infer that knowing Keppra causes distortion in an EEG and knowing Christian was on twice the amount...maybe Keppra caused the distortion on Christian's EEG? Just sayin'.

So much for not getting into details.

The other matter the neuro raised was that he basically didn't want me second guessing his prescriptions, advice, etc. In so many words. At first, I took this as meaning he didn't want me to consult with another neuro for fear that I would hop back and forth depending on who gave me the answer I wanted. Fair enough.

But now that I've thought about it...I think he meant that he didn't want me second guessing him. Not with another neuro but with me as Christian's decision maker. This should be interesting because what he'll need to realize is that no matter what he advises, it is ultimately my decision as Christian's mother, our decision as Christian's family. That is non-negotiable.

We'll be consulting again in a month and we'll see how it goes. This relationship may or may not last, but I'm willing to enter into a little team work for the sake of kicking some seizure butt.

Dear God,

Please let this medication help and not harm.

Please just let it work.

Amen.

A Boy and His Dog

We are back from California!

I'm not sure if anyone knows exactly why I went. Well, the ABM therapy Christian has done was developed by Anat Baniel. She is based outside of San Francisco but was holding a one day seminar/workshop in L.A. San Francisco is a tad out of reach but I can do L.A. so I jumped on the opportunity to go and learn more.

If you want to get an inkling of an idea about ABM, you can see Michelle, Christian's practitioner in Phoenix explaining the technique to the folks at MetroCare in this article. They visited during one of Christian's visits and wrote about ABM using his sessions.

This is one of the things Christian has gained from ABM...

A boy and his dog.

Here's more. Ruby, our doggy, decided she'd like to snuggle up to Christian. So he swung his arm over her and proceeded to love her.

"My dog!"

You can see the strength in his arm here by how tight his fist is. He closes his left hand often but it's never this tight unless he's trying to use his arm. But here he is actually pulling Ruby with his arm. I thought she'd ditch the whole ordeal, but she stuck around because she likes the attention.

ABM has helped connect his vision with his arm and hand movements to create a movement with intention and insight curiosity. As I mentioned, Michelle spent two sessions specifically working with these strengths - vision and touch - to bring them together and make more sense to him. And since then, he's taken what he learned and kept going. That's some of what ABM aims to do - go with what the child already does and build on it.

I'm glad we got the opportunity to go, but I'm glad to be home.

Seizureville

EEG is back and it's seizures.

I knew it, though. I wasn't in denial. When I first saw the jerks months and months ago, they didn't look like any definition of a seizure that I had ever known so I thought maybe it could be something else. Then an OT suggested that it could be seizures. Then began my journey into Seizureville - an unfun, unproductive village of trial and error, guessing games, and puzzles that may or may not fit together.

But it's alright. I mean I'd rather him not have them, of course, but knowing is better than guessing. Since the minute I found out there could be a possibility of seizures, I hit the books (actually the virtual books otherwise known as the internet). I read blogs about kids with seizure disorders. I watched Youtube videos of possible seizure types. I just attended an online seminar about alternatives for treating epilepsy. I prepared ahead of time so I wouldn't be devastated. We're familiar with devastation so I try my best to minimize it whenever possible.

So I welcomed the news because after three weeks post 24 hour EEG, I was finally ready for an answer. It was more like a confirmation of what I already knew.

In trying to sort out the details of what is pertinent information and what are just minor filler details - here's the long and short of it:

Christian's EEG showed a pattern of hypsarrythmia. This is indicative of Infantile Spasms (IS). Devastating, right? Well, it's devastating in healthy children because it signifies damage that may or may not be known to the parents. In Christian, we already know there's damage. It is strange because Infantile Spasms are usually associated with West's Syndrome and children grow out of them by the age of 2 years old. I'm not sure either of these will be the case with Christian. It is atypical for victims of hypoxia to have Infantile Spasms, but just recently there have been reports of it. It is also strange because Christian doesn't physically present with the traditional jerks of IS.

I've had my issues with Keppra, a seizure medication Christian's been on since the accident, at first for prevention. I've never felt it did anything for him. So it was a blessing in disguise that it took so long for the EEG results to come back. If I had received the results right away, I may have been too chicken to reduce and eliminate his Keppra dosage. So I've been reducing for about four weeks. As soon as I reduced the first time, one of Christian's most pronounced episodes, which happens while waking, went away. It doesn't surprise me, though. Christian has always reacted differently than expected to the medications he was given since he was in the PICU and sedated by Versed. It never went the way is was expected.

There are seizure meds that are specific to IS. One is Vigabatrin that families used to buy in Mexico and Canada to treat IS, but it just got approved in the US this year. It's supposed to be good and  the neuro strongly recommended this medication, but one of the side effects is loss of vision. Like we really need that. There is also a series of shots, but the neuro said he didn't think that would be effective. And there's the Ketogenic Diet, which I've been interested in trying for Christian because it's very easy since he's tube fed and it's med free. I'm not against medication...that works. I'm very against medication that does not work.

So there you have it. This is our next battle but I'm taking it slowly because I'm not about to load my child up with every seizure medication known to man. We're going to find a way to fight this and we will prevail. I just have to pay very close attention to Christian's reactions to new meds and all of the alternatives available in order to make sure we can give him the best possible plan of action.

My thoughts:

I have an odd feeling of...peace (is that the right word?) about the whole thing. I finally have an answer. I finally have truth and that always sets you free. The truth is he's have seizures. Now we are free from trying to figure out what it is and now we can formulate a plan of action.

I also am reminded (which I needed) just how much of a fighter Christian is. I am reminded that despite the massive damage that occurred, he's trying with all of his might to rise from the ashes. I've been frustrated for the last month or so with the pace of this journey and slow it can be, sometimes so slow it feels like we're parked. I am so proud of him for continuing to move forward, some days we're parked, but others we're moving. But, always, always moving forward.

I am hopeful. The way I look at it is that even though Christian has been suffering through these spasms for the last six months, he has still made progress! That is amazing to me!

Just think of the possibilities after we treat this thing!

Will this be hard to treat? Maybe. But something happens to this Mama Bear when something or someone challenges her Baby Bear Cubs - I get defiant and I wanna maul that something or someone.

Dear Seizureville,

My Bear Cub and I will not be staying.

-Mama Bear

Home Again, Safe At Last

Home again, safe at last.

-Berenstein Bears and the Spooky Old Tree

This is the last line of the book my mom used to read to us. It was the first book Gabe read to me from cover to cover after learning to read. And out of habit, I used to always say this line out loud every time we came home from somewhere. It didn't even have to be a spooky somewhere. It was always just fitting as we walked through the door and were safe at home.

So it's fitting because we are, in deed, home again, safe at last.

We did an entire week in Phoenix for ABM therapy. We attended an intensive, which is twice a day for five days.

I'm not going to lie, the first three days were tough. Not the therapy, by any means. It's actually an extremely gentle therapy of touch and manipulation.

Christian was just miserable. I'm not sure what it was...maybe teething? But it was completely exhausting for us both. Christian was tensed up, his head was stuck to the left (remember when it used to be his right?), and he just wasn't ready to learn anything. Which is kind of counter productive for ABM.

But by day 4, there was a calming. His head came out of it's left sided hyperextension. He wasn't crying. He was finally calm. Then, I finally saw him tune in and learn. That night, he did cry a little when I laid him down (this is becoming a habit - crying unless he's held). I picked him up and started working with him in ways I had observed him with the ABM practitioner. I was also watching a seminar by Anat Baniel explaining the ABM therapy and how the brain and body tie together (it was fascinating stuff!).

And he started moving in ways I haven't seen before. He grabbed for his foot, kicked up his right foot, and let me manipulate his shoulder blades and arms (usually pretty sensitive for him).

We completed the last two lessons today and we got an extra something along with it. Our practitioner, Michelle, invited one of her friends who worked in early intervention and visual services for a long time, came to work with Christian and his vision while he was getting ABM. It went great! He was able to track a small, yellow toy lion that sat atop the lady's finger - mostly to the right, but he looked down, as well. He was also able to reach for that and some red beads in the afternoon session. He was so attentive and really tried to get what was held in front of him a few times.

I also did a lot of learning. If you had asked me in the beginning of the week whether this was something we'd continue, I wasn't too sure. Mostly, because of my exhaustion from Christian's constant state of discontent. But now, I have a different feeling about it. It makes so much sense and would take me forever to explain and I'm not sure I'd explain it correctly, but it's something I'd like to pursue for Christian.

I was also able to experience a little of it and that kind of ties things together - really feeling what Christian is feeling.

I can't say that the trip home went as smoothly as the last two days of lessons. It took three and a half hours! The amount of highway accidents in Phoenix during midday traffic is ridiculous. Let me just say that right now. After pulling over to change diapers, clean up vomit, nurse a baby, and get food, we were finally home.

Christian's Daddy was really happy to see him. He held him for a while and I was so surprised by Christian's reaction. Well, not surprised that he liked sitting with Daddy. He's always like that, even before the accident. But he was so aware of who he was sitting with (he's become quite particular about who holds him these days). He slung his arm over Manny's midsection and kept moving his arm back and forth over his chest. He was so content. It was like he missed his Daddy. We all missed Daddy.

We learned a lot. We learned a lot as in Christian and I. When you do this type of therapy you really have to learn what it's doing. You can't just simply observe or it looks like just a bunch of touching. Next weekend we're going to California to learn even more about the therapy. It's always a learning experience.

Cut Off!!!

I am cut off from the outside world!!!

Okay, not so much the outside world, per se, but the world wide web, yes...I'm cut off!

The place where I'm staying has wifi but no signal in my room. I'm completely lost. And what a great time for this to happen - right at the close of auction when I'm supposed to be notifying people about their items and notifying donors to send the items!

So, please, bear with me. I'll be home Friday and I'll get all caught up over the weekend, I swear!

And how's Phoenix? Challenging. I'm so thankful that I have my mom with me to help. Christian has been so irritable for most of the trip and has cried his way through most of each day we've been here. It's been exhausting for the both of us, but for him more so, I'm sure.

ABM is going well, I finally figured Christian would just do better sitting on my lap. Luckily, ABM can be done this way.

I've got to make this short. Christian is upset, I'm feeding Lola, and typing with one hand in the dark.

Time to go back to our room!

Phoenix Tomorrow!

Deep breath...and....exhale...

The auction is over! That was exciting and quite an experience.  I was blown away by how many generous people there are out there that are willing to donate items for bidding. People are just so willing to help! It continues to amaze me over and over again through this journey. And it doesn't hurt that we raised over $1900! God is good!

So what will we do with this money?

I've got a few things percolating.

The first thing starts...tomorrow!

We're spending a week, Monday through Friday, in Phoenix. I'm packing up the babies and leaving the guys here (Mom's helping, thank God!). We're going to Phoenix to do more ABM therapy with a new practitioner who I was very impressed with just by our conversation we had over the phone. We'll do two sessions a day for five days again. I'm excited but a little sad that I'll be leaving Manny and Gabe for the week. We haven't been apart like this since we were staying at Hacienda in Phoenix last summer. We may swing by to visit our friends at Hacienda if we get a chance.

Anyway, if we get some good results with ABM, we'll continue with this particular therapy. If ABM isn't the way to go, I'm still considering going back to NAPA in Los Angeles. NAPA is the intensive physical therapy program that would last three weeks. I think I've mentioned this before but it's the complete opposite of ABM.

Something else worth noting is that we're on a break from hyperbarics. Since September, we've basically gone straight through, attending five days a week, with the exception of December when we took a long break. We also sometimes miss a day or so here and there.

I still believe in HBOT and believe it has helped Christian. It's just that...he is not liking it right now. Okay, he hates it. Every time we go, as soon as we enter the chamber, Christian starts crying and doesn't stop until we exit the chamber. It's constant crying straight through the session. It's not the pressure, it's not that his ears hurt, it's not the face mask. It starts as soon as we sit down before the door even closes.

So I finally came to the decision that he needs a break from it. We'll reevaluate it in another month and hopefully start back up again. But I'm not going to put him into a situation that is very obviously causing him stress. I really believe this is a phase. He used to cry and freak out when we'd go over speed bumps and now he doesn't do that anymore.

Now he can handle himself a bumpy ride. Lord knows he's had his fair share of bumpy rides, he has adapted, and prevailed. And there's a ton more prevailing he's gotta get to.

Beginning tomorrow...

Bullet Points

Here are few miscellaneous updates. I'll list them with bullet points to keep everyone up to date. I'm a fan of bullet points. It makes me feel organized. (If you don't see the bullet points, it's all Blogger.com's fault).

 So here goes an update of small events that transpired in the last twenty four hours:

• I attended a webinar today hosted by Phoenix Children's Hospital. The webinar was about alternative treatments for pediatric epilepsy. No, we didn't get results back from the EEG yet, but I'd like to be prepared for everything and anything. Alternative treatments for seizures that were touched upon included the Ketogenic Diet, Vagus Nerve Stimulation, and surgery to remove portions of the brain. Fun stuff. But is was all very interesting and I was really paying attention until...

• 
  
  ...I found out it's official - my kids want attention. They want me to hold them at the same time or they'll simultaneously cry. Christian has developed a preference for being held. He'll whine and cry, and then when he's held he's happy. That would be pretty awesome if I also didn't have a very demanding three month old that only wants her Mama. So I have Lola crying unless she's picked up. During the webinar, which was live and could not be paused, as I'm really trying to listen and learn, really, I have Christian on my lap on one knee and Lola on the other. How can I type a question when I'm covered in babies??? I manage to only type one question at the risk of two crying babies and a barking dog. I was bummed that I couldn't get more questions in. But it was informative and my kids are crazy attached to me. That's a good thing. And I am ever so thankful for my attached, demanding, vocal, crying babies. All of 'em.
• 
  
  Christian got a stander! What's a stander, you ask? Well, it helps him stand upright. It's called a Super Stand. We had zero problems getting it and we ordered it about two months ago. That's like being expedited compared to the months and months of waiting for a chair. We put Christian in it and he was less than thrilled. But probably more so because it was later afternoon and later afternoon = cranky time for Christian. So out he went. The base on this thing seems unnecessarily huge. There has to be a more efficient and compact way to construct these contraptions!
• 
  
  And last, but not least, Christian's Blogction ends this Saturday at 12 noon, central time. So you have another day or so to pick out your favorites, beat everyone else's bid, and win! Thank you all so much for your support! It's been a lot of fun!

Swim

Swimming will always be a part of our life in Arizona. It pretty much says on your state ID card - ARIZONA - must swim due to 100 degree temperatures. Wear sunscreen.

Swimming will always and forever be a part of our lives simply because of what happened. Christian almost drowned in a pool, in our pool. The grief and guilt I will feel about that incident will be with me forever.

But that's not what this post is about. Not really. I'm not ready to expose that black hole - gray cloud - dark shadow that follows (consumes) me at times on a public forum quite yet. Someday. I'm getting there.

This post is about swimming.

As I mentioned in the previous post, Christian went swimming on Easter Sunday.

It was awesome.

Now tell me that does not look like a relaxed little boy!

Because Christian responded so well to the water, I'm making plans to do this weekly. And, by the way, his trache stoma (hole) is completely closed and sealed, just in case you're wondering with that water so close to the area.

As I've told people about Christian's swimming on Sunday, I've gotten a few worried looks wondering how I was going to take it. I'm not sure everyone knows this, but a few weeks after the accident, Christian got pool therapy. He was no where near responsive at the time so he had no reaction with the exception of his body tightening until he was stiff as a board.

August 2009, Pool Therapy

So as far as I am doing...we've already crossed that bridge. Honestly, there was no bridge to cross if we're talking about metaphorical emotional bridges. And in retrospect, I can say that at the time I don't think I had an emotionally hard time with putting him in the pool again in light of what happened.

This is the thing...

I'm not nervous about Christian being in a pool or in the water again. Now, if it were the exact same pool where the accident occurred? Yes, that would be painful. But it's not the same pool and never will be.

If I were in a near fatal car wreck, I'm not sure I'd avoid cars for the rest of my life. 

I'm okay with it. Especially because before the accident, Christian absolutely loved the water. From the first time he was in the pool (my Gramma's pool, actually, which is where he went swimming on Sunday) he never cried, he just laughed and laughed and splashed and laughed. From then on he was a swimming nut!

When we went to Florida last summer about a month before the accident, he played in the ocean for the first time. The water was salty and stung our eyes but he didn't care. He just played and played until he couldn't take it anymore. Then he finally reached up to me when he had enough.

June 2009

He loved the water.

I feel like that is something he enjoyed so much, so why would I not give that back to him. He enjoyed Spongebob Squarepants and playing with his bouncy ball, but he doesn't know how to enjoy them anymore. Someday he will again, but not today.

If I can give this to him, and he can find a way to enjoy it again, which he seems to be doing in his own way, then we've made a connection between the old Christian and the new Christian. And any connection, no matter how small, choppy, inconsistent, or coincidental, is a joyful connection.

Hippity Hop

It was a hippity hoppity Easter, it was. I'm not sure it could have gone any better. Come on...85 degrees, sun was shining...it was a perfect Easter day. Can you beat that?

We woke up to baskets and breakfast - chocolate pancakes, sausage, bacon, cinnamon rolls, and my best friend - coffee. Daddy spoils us. And chocolate pancakes may seem way too sweet, but they are surprisingly subtle. Love them just the same.

Daddy showing Christian the rattle from his Easter basket.

Lola and her basket and her bumbo seat and her baby smiles!

We made it to church, late as usual. But we made it!

Speaking of church, I was watching the 10 o'clock news today and it was such an amazing site to see so many people around the world attending their respective services at their respective churches - troops over sees worshiping in a make shift chapel, popes in foreign lands presiding over their congregations, and even a pastor preaching the word while standing atop a pitcher's mound to a stadium of people. It was so connecting to feel that not only did our family attend services, but so many people around the world were doing the exact same thing at around the exact same time. On such an important day, Christians around the world collectively prayed and sang and gave thanks and remembered what actually defines us as Christians. It was awe inspiring. It was...moving.

After church we headed to Gramma's for swimming and food. This was Christian's first swim since last summer at Hacienda. Now, Christian's been super moody lately, pretty much for the last week or so. So I was a little worried he wouldn't like it. Nothing to worry about! He did so well!

He was so relaxed. He just floated. I could have stayed in that pool with him for the rest of the day and into the night. His whole demeanor changed. And, might I add, it was so much easier without his trache. I mean that was one of the things we had to watch out for last summer. It's not like we put him in the water past his neck, but, still, we didn't have to be as careful.

And then his mood afterward was so much nicer than it's been. I think just experiencing this afternoon in the pool with him has made me want to start taking him at least once a week - either to our local therapy pool (which is kept at 92 degrees) or to my Gramma's house (which mostly feels like a lukewarm bath in the 85 degree range).

Oh yeah, Lola had her first swim, too. She was not so happy about that. But she's a princess so that's to be expected.

We then ate outside in the warm, late afternoon amongst crying babies that needed a nap and family laughing as they teased each other back and forth.

It probably didn't seem like I enjoyed myself as much as I did, running back and forth between Lola and Christian, but it was a great day with great memories. In fact, I couldn't even be sad or reminiscent about last year. I admit I was nervous about swimming again with Christian, but it went so well that I can't wait to take him back.

Going to church as a family, dressed up in pressed shirts and frilly dresses.

First bathing suits and first swims with baby hair that smells like sunscreen and baby skin that smells like pool.

Food. A lot of food. And family. My most wonderful family.

And this day?

It was Easter today. We didn't have time to do an egg hunt or even dye eggs this year for that matter. But we have family, we have Christian, and we have many days just like this ahead of us.

A lovely Easter it was.

Frilly dress Nana Magdalena made.

"Ha ha! Mom, you're funny if you think you can get three happy children to look into the camera at the same time."

This was the 9th attempt.

Bro's.