Am I the only one who thinks IEP meetings aren't terrible?

We attended our annual IEP meeting Tuesday.

Am I the only one that doesn't think they're terrible, horrible, stressful meetings? Maybe it's my nature. I don't know. Maybe I would feel differently if I was going to meet up with a bunch of neurologists and doctors every year. That would be seriously depressing.

But IEPs? They're actually not bad. In fact, they're borderline enjoyable.

I think this is true because first, and most importantly, I truly believe his team at school - his teacher, therapists, administrators, his SPED teacher and his aid - all care about Christian a lot and they all want to see him succeed and thrive. Going into the meeting knowing this helps.

I always to to bake. Or at least bring something (like this last time because I completely forgot about the meeting). I learned this from my friend, Jenny. And from one of Christian's early interventionists. She had mentioned that a mom brought something to the EIP meeting and it set the tone for a more positive meeting and she always remembered it. Sugar neutralizes everything. I've been doing it ever since and, at the very least, everyone is excited to see you. How can they argue with someone who just brought them cookies?

Our IEP meetings aren't terrible. This may sound, indeed, terrible but I think it's because nobody really knows what to expect from Christian. Not even me. This time last year I would have put money on Christian learning to communicate and give us yes answers with his eyes. I thought this was the way we were going.

Nope.

Christian had other plans and so did his voice. He actually started intentionally looking at and away from things and using his...VOICE. Who would have thought he'd use his voice to communicate anything other than crying? This kid. The one who didn't make a peep for six weeks after his accident. And then did nothing but cry for two years afterward. And now he makes sounds when we ask him if he wants something. And it's pretty damn consistent.

So everyone pretty much expects nothing from Christian, which may seem bad, but it's really because nobody knows what to expect. Especially looking at him. I'm sure if you read this blog you've seen pictures of him. He doesn't look like he can do much. But he's got you fooled, people.

Back to the IEP, because nobody really knows what to expect from Christian, everyone is always very pleased with his progress. He has grown leaps and bounds this year. When he's evaluated for goals he is rated from 0-5. For example, he has made a choice using his switch 3 out of 5 times. And it's measured every quarter for consistency. What his team is discovering is it's not whether Christian can do what is asked. It's about time. He just needs extra time.

And his kindergarten teacher reported that everyone loves Christian. All the kids want to read with him, choose him as a partner, sit with him, and I had to bite my lip so I didn't cry like a baby. That's what I want for him. Love and acceptance.

So we made some goals for next year. And I think we might try the...b...b...bu...bus. I'm not sure I'm ready for it but he is. He already rides the bus to and from field trips. It's me who needs therapy for this.

I'm just so pleased with his team. His SPED teacher is amazing and fights for what we want and makes sure it is written in the IEP. And his aid? Don't even get me started on his aid. She speaks Christian.

She sent me these pictures from her phone.

He's in excellent hands. I'm sure of it.

Christian's First Week of School

Christian started kindergarten on Monday at a new school! And it just so happens that big brother went to this school, too.

Off he goes!

And this is what he looked like when I  picked him up. Tired!

This is his sensory wall at school. He really liked it! One of the squares has bubble wrap on it and I hear he really liked it and used his pointer finger to pop the bubbles.

Here he is in the kindergarten classroom with his aid.

And here he is this morning off to finish up his first week. He was so tired this morning.

The first day of school I had planned to stay with him all day. But by the time we got to lunch it seemed like everyone knew what to do, including Christian. I think it's important they have their own time with him so they can get to know him without my interference. They have to create a bond with him and if I'm always jumping in, it's hard to make that happen.

When I went to leave I asked him if he was ready and he was so vocal about it. Probably saying - Can you leave already? Nobody else has their mom here!

We're all doing well with it. The first couple days I felt like it was such a long day away from me with a full day in kindergarten. I would think throughout the day - I wonder what Christian's doing right now.

For the first day I made a little book about Christian talking about what his favorite things were, about his wheelchair, about his button, and about things he does. The teacher let me read it to the kids so they could learn more about Christian. I didn't want them to be afraid of him. The preschool kids kind of just blindly accept him but as the kids get older they have more questions and fears. So the book helped relate Christian to them but also explain why he does some of the things he does. I'll post the pages soon.

 So it sounds like Christian is really liking school and I can't believe how big he is! Oh yeah, and it has been so much easier getting him back and forth to school! I used to have to load him and Lola up every morning and drive about twenty-five minutes to his school. Then park and unload Christian's wheelchair, Christian, and his grumpy little sister who was still in jammies half the time. We'd have to trudge through the office, the school courtyard, and all the way to the back of the school where his classroom was. Then we had to turn around and do the whole thing again two hours later. 

Now his school is five minutes away. I can hear the morning announcements from my front door. And because I was having trouble finding parking when school pick up and drop off purgatory was taking place, I now just pull up to the side of the school and his awesome aid helps me unload and load the wheelchair into my van and then she takes him into his class! It has been a dream!!! It's the little things that make life easier!

I'm really excited about this year and still in disbelief that he is in kindergarten.

Kindergarten for Christian!

Kindergarten is on the horizon! 

(Can you believe that? Because I can't. He's still a baby!)

We're done with IEP meetings and goals and I've toured two kindergarten classes and two schools.

I have to admit that touring the kindergarten classes was a little overwhelming. It is definitely way different than the kindergarten I attended. I went in to see kids maybe in circle time or coloring. What I actually saw were kids learning on iPADs and projects involving butterfly chrysalis (I had to google that spelling. Maybe I should go back to kindergarten.)

If I'm being honest, it's hard for me to envision Christian's place in a classroom like that. But I also remember feeling that way when I toured the preschool class and the preschool experience has been an amazing adventure for Christian. He just loves being around all the kids and they love him so much! They greet him every day, in fact, just today his little friend ran up to him and put his picture of a fireman in Christian's face to make sure he saw it. And yesterday I found a little folded up picture in his backpack. When I pulled it out, I saw this:

That's Christian's little friend. She drew him a picture of herself holding hands with him. That's his wheelchair with all four wheels. 

Be still my heart.

We'll miss preschool so much but kindergarten is ahead! And we've made the final decision about where Christian will go.

Luckily, our district has what is called a cluster program. This allows children to join in mainstream classes when they can and then break out for individual learning and therapies. This is what Christian will do. He'll probably join in for everything social like music and library and then break out for PT and OT. This is the best of both worlds. 

I briefly thought about looking into the type of program that is primarily for children with special needs, however, for as long as it's right for Christian, I'd like him to have exposure to typical children as much as he can. He thrives off of it and I think it's really good for the other kids, too. I think we'll know when and if the time is right to move him.

The school we chose is a block away. I can hear the morning announcements echoing from my bathroom window! And this school has a long history of being the first elementary school in the district to have a special needs/integrated/cluster program. They also get a brand new, handicap accessible playground for the kindergartners! We met the incoming director of the special education classroom and she is genuinely interested in really getting to know Christian. I'm so excited for him and I feel really good about this.

School has been one of the best things for Christian and his progress. He has become more tolerant of noise and action, he really enjoys being out and about now, and he has become more vocal! I think it has a lot to do with being around noisy friends at school.

And Christian? He is doing so well. It's more than I could have asked for. I just wanted him to smile and the rest would be extra. Now he's not only smiling but smiling in response to what we say or what we do. If we show him something he likes, he'll give us his half smile. If I tickle his leg or his cheek, he smiles. The other day I told him Lola brought his stuffed frog with her to pick him up, I showed it to him and he smiled. His daddy picks him up and bounces him around, spins him in his chair, and he smiles. He has even done what we think might be laughing when he gets spun!

He's also "talking" a lot! For a kid who was completely silent for months then only cried and sobbed for years, vocalization is like...well...a miracle! It is like music to my ears waking up and hearing him making sounds in his bed. Even better is when he vocalizes in response to when someone talks to him. 

Just when I think that's all he's got, he shows me more...almost four years later! He is such a lesson in hope and never giving up. Never underestimating. He is just amazing.

"Motherhood is about raising-and celebrating-the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." 

~The Water Giver~

(Courtesy of my friend, Sarah's, emails. I think about this quote every time Christian teaches me something. Which is pretty much every day.)

What I learned on the last day of school.

It was Christian's last day of school today! He made it through his first, whole year of preschool! We really couldn't have asked for a better experience and I can't believe it went so fast.

We baked two batches of chocolate chunk cookies for Christian's team - his teacher, his aides, his PT, OT, Speech Therapist, as well as his team from where he spent the first half of the year.

That, there is a sun tea jug full of chocolate chunk cookies. You may notice Christian is not embracing this cookie jug and I'm pretty sure it's because he wants no part of giving all of them away. Sorry, Christian. They're all for the teachers!

Christian with his teacher, Miss Christy. We'll miss her, but she'll be his teacher next year, too!

I'm so proud of my little dude! He was too tired to celebrate.

This school year was full of a lot of change. I'm sure Christian learned a lot. He learned to hang without Mommy always in his face (ignore the picture above). He learned to be around other kids without getting upset or over stimulated. He made me pictures and projects and even planted a bean plant that sits on our window sill. And it's still growing!

I've learned a lot, too. I learned to trust that Christian would be just fine without me. There was not a single day that I kissed him goodbye that I felt he wasn't safe, cared for, and wanted by his classroom.

I learned that Christian is teaching others at his school about acceptance every day. And I learned that kids his age were readily accepting of him, even getting down right excited when Christian came to school. I learned that Christian had friends! He was invited to his first birthday party of a classmate, he went on his first field trip, and he got to "stand" outside with his friends. I learned there was always room for Christian.

We had a pretty positive experience this year. But in the last few days of school there was what seemed to be a foreshadowing of what may come in our future. After a whole school year of abundant acceptance, I noticed while pushing Christian through the school courtyard during lunch hour, that some of the smaller children, maybe around 1st grade, were not only staring (which we're used to and not really bothered by at this point), but were laughing and snickering at Christian. This not only happened once, but a few days in a row.

I understand the staring. They don't understand what they see. But I learned that the laughing, even from a small child that doesn't know any better, hit me right straight in the heart. I think this experience deserves a whole post, which is coming, but the short version is that I learned that standing up for Christian is going to take a different turn in our future. It won't always mean asserting ourselves and advocating in the medical world or with IEP's. It will mean something totally and completely different. But that's for another post.

For now, I'd like to highlight the positive of this year. One of which being one of Christian's little friends from school named Eva. Eva is a beautiful little girl with big, gorgeous eyes who is living with Holoprosencephaly. She and Christian get to ride in their chairs to recess. And today, the last day of school, I talked to her mom, Gabby for a little longer than we usually do. In those short, last five minutes, we were on the same page like nobody's business. We had different stories in how we were brought to the same school, the same classroom, but we shared the same grief, the longing, and the same bittersweet.

So the biggest lesson for me this year, and fittingly learned on the last day of school, is even when we feel we are alone and that not a single soul on the planet knows exactly what we're going through, we're proven wrong. And that's a really good and appreciated lesson to learn.

What else did I learn? She has amazing insight. We're learning the most from these little ones in front of us that ride their chairs to recess.

"...But I swear that little girl is a teacher! She taught me how to spell, H-O-L-O-P-R-O-S-E-N-C-E-P-H-A-L-Y, M-O-T-H-E-R and more importantly F-O-R-E-V-E-R!" - Gabby's Blog.



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.

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.

What kind of mother is she?

"Watch kids around water!!!"

I see this everywhere. Or maybe I don't see it everywhere, but when I do see it, I'm extra sensitive to it. It's as if it appears to me italicized, bolded, underlined, with three exclamation points.

Probably because when I see it, I'm reminded of that day and I feel like it's someone yelling at me, specifically.

Remember? Watch your kids! We don't want to have to tell you again!

It's warmer this year and the warmth came earlier than usual to some parts of the country. I've unfortunately already heard about near drownings and drownings, which are actually not weather specific but they do tend to increase during the warmer months for obvious reasons.

When I see these tragic stories online, I've ventured to the comments section and I'm reminded of what people think of mothers like me.

Why wasn't she watching her kid?!

She should be thrown in jail!

Where was his mother?!

It's neglect!

She should burn in hell!

What kind of mother doesn't keep an eye on her toddler every second of the day?

What kind of MOTHER IS SHE?

And I've seen worse. It's not surprising, but it takes me back to that time. I used to be that person. The person that rationalized why it wouldn't happen to me and my child because I took precaution xyz so that would never happen to us. It's a coping mechanism and I get it.

But then it happened to me.

The comments don't sting so much for me anymore because I've dealt (am dealing) with my guilt. I'm totally stealing this from a good friend who said having her accident happen on her watch was a gift. I don't walk around with anger toward anyone else. I know exactly what happened, there is no question. And I have no one else to blame but myself. That is, ironically, a gift. It's manageable. It's something I have worked on.

"What kind of mother is she?!"

Well, let me tell you.

I take my oldest to football practice and my youngest to ISR so she'll know how to save herself should she fall into a pool (and she does know how to save herself). I exclusively breastfed all of my children and started them on their first solids - a banana - at around six months old. I covered all of the electrical outlets with plastic covers and the bottom cabinets are also baby proofed. I put my kids to sleep on their side or back without stuffed animals or blankets in the crib to avoid suffocation. I took all my babies to baby gymboree classes and stayed home with each one of them for at least some portion of their babyhood. I questioned vaccines, refusing to consent to the chicken pox vaccine twelve years ago.

I'm not trying to prove that I'm a good mother, but I'm trying to point out that I don't consider any of the above within the definition of neglect. I did everything other mothers do to take care of their babies. I don't take comments on random articles to heart so much for myself, but I do get protective of other moms. Moms just like me. Moms who love their children, but made a mistake. Maybe there was distraction involved, maybe miscommunication, whatever the cause, it is a far cry from neglect. And to reason away the fact that something like this could never happen to you negates that there are accidents in this world. You get comfortable with your surroundings thinking you know the layout and cause and effect at every turn in your own home. And then you're proven wrong.

The worst mistake you can make is to think an accident of great magnitude will never happen to you.

Place of acceptance.

Christian had a play date a few weekends ago with his buddy Quentin. It was really a double play date. Let's just say the boys got to benefit from the moms wanting to bake chocolate things and eat them with a side of wine. Lucky kids, lucky moms.

We got to talking, as fellow moms tend to do when there is chocolate and wine involved. We started talking about trying new things with our boys. But not in the way that you think.

I'm just going to go ahead and say it - the truth. Truth is, I don't want to try new things anymore. It doesn't mean I won't. I just don't want to.

Trying new things puts me in a different frame of mind. I feel like I've come into the beautiful world of acceptance. This world runs a little more smoothly. It makes for a little more calm. And it's happy there. Blissfully unaware of what may or may not send your child into a tailspin.

When I try something new, I leave that world just a little bit. I'm all of the sudden on alert for anything "new" or different. Anything "better."

Did I see it? Is that different? Has he been doing that all along? Am I seeing things? Maybe it's just because he's sick? Is that a seizure or is he excited?

I poke around, observing Christian as if he were a patient and not my son. And when things turn out differently than expected, there is a level of disappointment. Then I'm really not in the world of acceptance any longer. I've taken the off ramp and I need to pull over.

I've felt like this for a while now. At least a year. That's why I haven't been overly anxious to travel for therapies or really try anything new for improvement. It wasn't until we had the opportunity to try Ambien that I got anxious again. Anxious for better. Anxious for more.

The Ambien turned Christian into a child that was a different Christian. Not better. Just different. I didn't know him very well on Ambien. And I'm not sure it really did him any good. But what I can say is that it's been about a month since we stopped, and for the last four weeks I've felt anxious. Anxious to get my old Christian back.

In my last blog post I wrote about missing baby Christian. Well, I've also missed the Christian prior to Ambien. I feel like he's finally settling down from that experience and I am so happy to see my old Christian again. It's like a deep breath. On the exhale, comes a realization that maybe he is better. And maybe it is very much better hanging out in this world of acceptance.

I read a friend's blog (Mason's Mommy) and in it she posted a writing called I am the Child by an unknown author written from the perspective of a child. I was particularly struck by this -

My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity.

Christian's favorite thing in the whole wide world is to be held. And our arms are so important to him. He may not need Ambien. He may not need another therapy trip. But he most certainly needs our arms holding him.

So will we try new things? Sure. But I'm not anxious for it. I want to be in the happy place of acceptance. It makes me a better mom. And I think as long as our arms are around this little boy, he's happy in the place of acceptance, too.

So what's new for now? Hopefully more play dates!

The Guessing Game

Let The Guessing Game begin!

We had a three week run with Ambien. And the overall perception is that it definitely does something to his brain. I got to hear sounds I had never heard. I got to see more smiles and I might have even heard a giggle, still not sure about that.

The first two weeks I loved the Ambien because it seemed to stop his irritability in it's tracks. I would call it his "Happy Juice." It's like he would enter another world. His reactions were quicker, he had more strength. He would stop whining and crying and make other noises. Just like in the stories I've read about, it was like a light switch. It would turn on thirty minutes after giving it to him and dim out about two hours later.

But then the whining and crying came back. And it seemed almost worse. My theory is that the Ambien would make him so tight and toned out that his legs would literally tremble. I think physically, it made him sore, which caused more pain and whining, possibly.

I also think it increased and/or strengthened his seizures. This is not a surprise to me. Any time you mess with an already fragile brain, this is the risk you take. I know this. But the benefit has to be greater than the risk. Is that the case with Ambien? Are we getting greater benefits than risks in terms of seizure activity? I'm not so sure. And it does really put into perspective how mild and, dare I say, under control, his seizures were, now that I see how they've amped up.

Over the last week, we decided to stop the Ambien, due to the increased irritability and seizure activity. I've been observing Christian every day and he's been sort of "off" ever since he was on the Ambien. He's more irritable. His sleeping is off. And the seizures are a stronger version of what he usually has. I've been observing to see if it changes, if he needs to stabilize, or if we need to take further action.

The good news is that he's still moving and looking and reaching. None of that has gone away. He's still got his skillz! And I'm still observing, still unsure. Blaming this all on Ambien and then tonight he comes down with a snotty, green nose. Of course he does. So is it really that something else was brewing all this time? Welcome to life with a non-verbal child - otherwise known as The Guessing Game.

As you can see, I'm stuck. I'm willing to restart the Ambien just to see if that is really what's causing the shift in well being. I mean if he continues or gets worse, that means it's the Ambien, right? Yes, it does give me more smiles, bigger smiles! But I don't want to push this at the expense of his physical comfort. There are twenty-two more hours in a day, and, although those two Ambien hours are very interesting and revealing, Christian's overall contentment is what is THE MOST important thing for those remaining twenty-two hours.

What to do? What to do? So far, it will be waiting to see if he's coming down with something. Because if that's the case, it will explain this last week. If not, The Guessing Game continues.

This is your brain on Ambien.

We've been using Ambien for about three weeks now and I've got some things to say about it. Nothing definitive. And maybe nothing that even makes complete sense. But I wanted to share.

Ambien does stuff. There's no denying that. There is an effect. I don't have to look for it or figure it out. About twenty minutes after it hits Christian's system, he is different. The look on his face, in his eyes, his heart rate, his body - it's all very different.

Noticing there is a clear as day difference is the easiest part. There are so many therapies and medications that I've had to hem and haw and make sense of whether or not they really have an affect. Not Ambien.

But I still can't make sense of it. I gave him a dose during OT and speech so they could witness it for themselves. They saw differences. But they couldn't make sense of it either. It's like there is too much going on at once to even give any yay or nay opinions on what we're seeing.

There is more movement, but more involuntary movement. Less coordination, but more strength. A lot more tone and posturing, but using it to roll. There is focus in his eyes, but it's hard for his body to relax. He's constantly moving. It's amplified disorganization. He's wired, there's no doubt about that. He makes sounds I've never heard before. He smiles more. His heart rate increases and his cheeks flush.

In about two hours he comes back to regular Christian. Regular Christian has more accuracy, more range, more relaxation, but movements are slower, far slower, and less consistent. Regular Christian floats in and out of attention.

But today, we tried Ambien in the morning. I didn't want to try it in conjunction with PT because his tone is just so high that he wouldn't be able to stretch or relax at all. As he was on his way back to regular Christian I bounced him on the yoga ball, which he usually likes. He's also always likes when we take his arms and pat the ball like a drum. So as I was drumming the ball with his hands, his hand opened up and he leaned into what we were doing. Then he lifted his head and gave me the biggest smile he's given me to date.

I cried happy tears.

I tried to duplicate it. I balanced him on the ball, tried my best to drum the ball and take video at the same time. Ummm, no. It was not happening. The moment had passed. But it's mine forever.

So I wanted to show you all what Christian looks like on Ambien. After watching the videos I decided it really doesn't do the actual affect of Ambien justice. Especially if you don't know regular Christian very well. But I'm sharing anyway.

Remember...these movements are very subtle and can be very slow. So if you're in a hurry, keep it moving!

Make a video - it's fun, easy and free!
www.onetruemedia.com

This next video is of Christian's "rolling." I put rolling in quotes because he uses all of his extension and tone to do this. This isn't surprising because his tone and extension are triggered whenever he tries to move. This is just how Christian's brain thinks the body should move. So this "rolling" is not the PT standard for proper rolling by any means. But he does it. And Ambien gives him the extra tone and strength to get completely over to his back. It's not one complete movement so bare with the video. It will come.

Wait for it....wait...for...it....

Make a video - it's fun, easy and free!
www.onetruemedia.com

Are we going to stick with Ambien? Jury is still out. I'm not sure all that extra tone and posturing is good for him. And, of course, with brain stimulation comes more seizures. It's just law - when the brain is messed with that's what happens. (You probably noticed a couple of jerks on the videos.) To be continued...again...

And just for some comic relief, here's a video of little sister. Going through the videos, I forgot I took this one and it made me laugh all over again. Didn't you know? Lola is a budding superstar!

Make a video - it's fun, easy and free!
www.onetruemedia.com

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.

Getting Messy

Things got a little messy around here this week. Christian's new PT had a new idea to facilitate pre-rolling...finger painting!

So we tried it on the left side...

...and, of course, little sister had to try it, too...

...and we tried it on the right...

...and, honestly, he wasn't too psyched about the whole side lying thing.

So we tried it sitting up.

And I think Christian was a little more interested in painting his masterpiece in this position.

And Lola? Well...

...this is about the point I told her not to eat the paint for the seventh time.

She was covered! And needed a bath immediately following the completion of her masterpieces.

The Masterpieces:

I love them all! They are definitely promised a spot on the "art wall" I started when Christian started school.

I got a little messy, too...

I found a really simple recipe for Sugar Donut Muffins. The actual muffin came out a little bland so what's a Momma to do? Got a syringe laying around? I know I have a few.

 Another good use for a syringe?

Um...maybe fill it with some Nutella. Just sayin'. Or strawberry jelly. Whatever. And, well, you can see how the rest of the story went.

Insanity.

I made them Saturday and they were so good I was forced to make them again tonight.

And this stinker got a hair cut today. But after an hour of crying and whining tonight, he finally fell asleep. So, shhhhhh...we won't wake him.