Gulp

Christian passed his swallow study! It was not easy, let me tell you. He has been in the worst mood today.

The OT said to bring foods he might like, foods he might dislike, basically anything he reacts to. So I brought dum dum pops (he doesn't like these, he seems to dislike it in his mouth and pushes away or tries to back away from it), a lemon wedge (he likes citrus but I didn't have an orange), yogurt, water, and a few other things to work with.

Let me take just a second to explain how a swallow study is administered. Food or water is mixed with a substance called barium that allows an x-ray machine to see where the food is going when swallowed. We gave the barium alone as a liquid (close to water, which is what Christian responds to the most and the quickest) and mixed with yogurt. Then he was seated next to an x-ray machine while we watched how his mouth and throat reacted.

Despite all the cool things I brought for him to try, we couldn't use anything but the yogurt. Why? Because Christian wasn't having it. He cried the whole time. I tried to put the barium and yogurt with barium on the tip of his tongue so he could work it back towards his throat and swallow but he wasn't participating. It's usually pretty easy to get him to swallow but he was so mad. It was so stressful - I had our OT, the speech therapist, a doctor, and an x-ray technician probably all thinking, Come on, already! It was so stressful and I could feel myself getting hot. By the way, Lola was in the waiting room crying and we could all hear her. So much fun. Did I mention it was stressful?

Finally, the speech therapist put her hand on my shoulder and very nicely said, "Okay, I'm going to be mean...squirt it [barium] in the back of his throat." She explained since the main reason we went to the swallow study was to see whether he had a swallow reflex, let's just do that. I agreed.

So with the syringe I squirted the barium toward the back and side toward his cheek. He cried...swallowed...then cried some more.

Success! X-ray shows no aspiration, meaning nothing is going into his lungs and he's swallowing just fine!

We did the first try with barium alone which is the consistency of water so if he can swallow that, he can probably handle thicker liquids. Just to make sure, we tried yogurt and he swallowed with that, too.

We got our answer! I wasn't surprised that he could swallow well because I've seen him do it but now I have confirmation and I'll feel more comfortable going forward with tastes and small bites to eat. The tricky thing is trying to get him interested in eating. But I'm not pushing. I'm just content in knowing that when the time is right, it will happen...safely.

They're back...

They're back. Boo.

They gradually started appearing, unwelcomed. At first, I was unsure. But now I'm sure.

His jerks, that is. His seizures. Actually, I'm not really sure that each and every jerk is a seizure but, for the most part, I can conclude that the once revered Vigabatrin, has failed.

They started making their appearance sporadically before we went to NAPA. I figured it was his body regulating to the medicine. At the onset of the medicine, there were no jerks or spasms. But Christian was completely drugged. There was no tone, no purpose, Christian just checked out.

As the weeks passed, Christian slowly came out of his druggy fog and started doing some things he'd never done before. He started getting his upper half from one side to another, actually purposely reaching for toys. It was then that I realized that seizure control is not something to be flippant about. It is completely necessary for Christian to progress. You don't know something is wrong until it's not wrong anymore.

As Christian came "back" a little more each day, so did the jerks. So did the vomiting. So did the tone. It wasn't ALL bad. I mean, he was finally present again during OT. Prior to going on Vigabatrin we were gaining some headway with tastes and making our first steps in maybe trying foods by mouth. But that came to a halt when we started the new medication because his swallow suddenly became very relaxed.

When the jerks came back, Christian's OT confirmed that she saw it but that he was also more present. That is true. His swallowing is a lot better and stronger now that the Vigabatrin has kind of "worn off."

The jerks got more frequent during our week at NAPA and then when he got his temperature after we got back, I saw activity I'd never seen him do before.

I didn't know what to expect with Vigabatrin so when it seemed to work I was excited. At this point, I just want to move on to the next option...quickly. Other moms who have children with seizures understand that every time you see your child exhibit the slightest bit of seizure activity it's like your puppy dies over and over again, especially after you've had seizure control. I don't know where I got that from, I think it's in a movie, but I can't think of a better way to put it.

Christian is maxed out of Vigabatrin for his weight so this is the end of the road for the big V. The next step is trying the Ketogenic diet. I'm hopeful for this option because it's not a medication! It is a hard diet for those who are fed by mouth but since Christian is fed by g-tube it isn't all that hard because I control everything that goes in. However, it's not a diet you just up and decide to do. It requires hospitalization and very careful monitoring. It is no small feat.

I truly believe that the seizures have stolen some of the progress and development for which Christian is entitled. I also believe that seizures are the villain that has stolen his smile and not allowed it to return.

For that reason alone, I'm willing to do WHATEVER it takes to banish those jerks from Christian's life and run them right out of town.

Ode to NAPA

Oh, NAPA, how I love thee.

We're back home from our one week session at the NAPA therapy center. I'm glad to be home, but I was sad to leave.

It was such a great week! I wish we could have done the full three week program, but one week was all we could do for now. I was also comfortable with one week because I wanted to see how well Christian would respond before knowing which therapy to pursue. It's all about trial and error.

Many people ask me about the therapies we've tried for Christian. Sometimes I don't realize that all these words and terminology are not commonplace for the average person. It's often hard to explain what therapies and treatments do, especially when they're alternative treatments. It's also often hard to decipher what results are derived from therapy versus an individual's natural healing process.

So let me tell you about NAPA. It's not hard to explain. Intensive physical therapy for four hours a day. Stretching, exercising, positioning, standing, sitting, moving, moving, moving. It's like special needs boot camp.

Here are some of the things Christian did everyday.

Christian is positioned on his knees and with assistance from the physical therapist, he's balanced and pulled by bungee cords. This exercise is particularly beneficial for Christian because it stretches the heck out of his quadracepts. He is not a fan, by the way.

In this picture, Christian is working with weights and pulleys to strengthen muscle groups. He didn't mind working out his arms. His legs...not so much.

Christian was also able to get on the trampoline in multiple positions (here he is pictured sitting, but he was also on all fours). The bouncing motion from the trampoline gives vestibular input and stimulation, which is particularly beneficial to children with brain injury and/or sensory issues.

Still on the trampoline, Christian is positioned in a side-seated position (both knees facing the same way). He was also not a fan of this position (nor is he ever) because it involves a lot of quadracept stretching. Quads are his weak spot in that they are the hardest muscle on him to stretch because of their high tone.

This is Christian swinging. Yes, swinging. Again, it's really good vestibular stimulation and rocking and swinging is very calming for Christian. His head, trunk, bottom, and both legs are supported by what looks like miniature hammocks suspending him above the table.

At the end of each day, Christian is put in a standing position so he can bear weight on his legs and hips. He was usually exhausted by the end of the day and tried to fall asleep while standing. So the therapist tried the bongos to get his attention. Didn't work, but made for a cute picture!

Christian's last two hours of the day were spent in Tomatis therapy. This is an auditory therapy that Christian "woke up" to while listening. He was always very aware while listening, and at the end of a busy, active, challenging day of therapy, this was like Christian's chill time.

So what can I gather?

I love NAPA, plain and simple. He needs more of it and I wish we could have done the entire program so I could see the full benefits. But a week was enough for me to know we will be pursuing this therapy and working hard to be able to go again, but next time for the entire three weeks.

I met parents with kids like mine. Not exactly like mine, but parents with similar stories. I met beautiful children. It felt so supportive and friendly and...normal? Yeah, it felt normal.

The therapists were amazing. They really believe in the potential of each child that walks through their doors. Not because they say it, but because they live it. They talk to each child like they fully understand. They expect more from these kids and they push and challenge them. They are awesome!

I think Christian feels the same way.

Before we left I spoke with the therapist about what we could work on when we went home. We discussed different ideas and she told me she thought Christian was really communicative (totally true, he will let you know when he hates something). She also said he performs the best at things that are the hardest for him. I have believed this ever since his PT here at home visited him for the first time and pushed him like I'd never seen. It's when he really comes alive.

It's not rocket science. When you stretch and exercise there is progress. Christian's quads look awesome and his legs can now bend with very little effort. The tone has decreased so much and he's even started moving his legs a little more. I'm so anxious to see what three weeks would bring. It's not hard to understand. It's 1+1=2. Exercise and stretching equals results. And I believe that even if the brain isn't ready to take over and make the body stand or sit on its own, at the very least, instensive therapy works the body out in order to maintain it while the brain catches up.

 Unfortunetly, 24 hours after arriving home he came down with a pretty high fever that he's now sleeping off. No worries, his pediatrician says it's just a bug.

But I definitely see more NAPA in our future.

Happy Father's Day!

Hooters Hot Wings...Monster Energy Drink...Jelly Donuts

Ahhhh...Father's Day.

It's been hectic around here and after coming back from Napa we hit the ground running.

I wanted to take just a couple minutes (although more minutes are deserved) to give a shout out to my baby daddy!

You know dads of special needs kiddos often go unnoticed. They hide away in their work, their projects, their sports, their whatever. They deal with things differently. They aren't usually the ones on the forefront. They aren't the ones meeting therapists, learning new stretching techniques, researching possibilities. These dads probably aren't crying out loud, fighting with insurance companies, ordering equipment, or blogging about progress and speed bumps. They don't run this marathon the same way.

No. They don't necessarily do it the same way as the Mamas.

They might offer to watch the kids so the Mamas can get a break. They offer encouraging words in moments of despair. They work an extra few hours or side jobs in order to afford extras for their kids. They might cry silently, privately, where nobody can see.

Okay, so I'm about to get all symbolic and analogous, but stay with me.

As far as my own marathon goes, Christian's dad is my coach. He's the word of encouragement that tells me to keep running. He's the comfy tennis shoes I need to run in. He's the bottled water I need to rehydrate. He's my support. And he's also running right there along side with me, waiting to cross the finish line.

I'm not quite sure how I would have gotten through the last year in my life without my husband or my own dad. It was my dad who rushed to my side when Christian was in the hospital. He came when I needed my daddy. And it was my husband who walked through the darkness with me, out of the PICU, through the last year, and is still standing, running, with me today.

Manny doesn't try out new therapy positions on Christian. He doesn't bounce on the ball with him or practice rolling. No. He does a much better kind of therapy. He holds him in his big daddy arms every single night. Every. Single. Night. And every single night, it takes my breath away. I think it might be one of the better therapies in Christian's routine. Just sayin'.

So, after getting all softy on everyone, to the daddy's in my life, to the special needs daddy's, and to daddy's everywhere, Happy Father's Day!

Thanks for running.

Napa in a Nutshell

How do you blog about two days worth of intensive therapy, among other strange and unusual events? Why, with pictures, of course!

I'm a little exhausted so I don't have the brain capacity to write in detail about the events that have transpired over the last 48-72 hours. But I've got pictures! I've got a bunch of 'em.

But first, let me briefly tell you about the last couple days...

We arrived in Long Beach, California on Sunday. That's where we were staying. It was decided, for a couple of reasons, that we would relocate to a hotel right around the corner from Napa - literally walking distance. It just made more sense because the drive from Long Beach is 30 minutes to Napa (this is 1 hour minimum in LA language and we had to be there at 8AM). So we packed up everything and headed to the new hotel where we promptly experienced our first earthquake from high atop the seventh floor. Good times.

Monday was a really good day. Christian tried a neuro suit for the first time. I like to call it his Robin Hood suit. Just call him Prince of Nottingham.

Christian met his new physical therapist, showed her how much he hated it there, and arched and extended his way through the day.

"I hate it here!"

But then the clouds parted for Christian as he was introduced to his first session of Tomatis Therapy.

"Okay. All better now."

Day two brought a little more cooperation and a lot less protest.

And if intensive physical therapy is his dinner then Tomatis therapy is Christian's dessert.

"Interesting..."

So there you have it, folks. A blog in mostly pictures. I apologize, but I just don't have anymore day left to explain what Tomatis therapy or neuro suit therapy is so I left some links for your own reading pleasure.

And as if you hadn't seen enough pictures...here's how we ended our day...

...on the Redondo Beach Pier.

Yes, that's my 11 year old looking like he's 17.

Yes, it looks cold because it was.

Until the next Napa update...I'm out.

Fighters

The PT always suggests Lola get involved with Christian. So sometimes we'll bring her over so Christian can see her while he gets stretched out. As Lola gets more active, she'll be crawling, walking, and jumping all over Christian, like any pesky little sister would do. It's important to let her crawl all over Christian not only to "inspire" him, but to toughen him up so he's not so sensitive to sudden touch and movement, especially with one of those little sisters hanging around.

Here's what happened...

This isn't what I meant when I told Christian to "keep fighting!"

Or maybe it was...

It looks like I'm a mean mommy allowing my two munchkins to go at it, but nobody got hurt, there were no tears, and only a few whines of protest from Christian. But he held is own.

Such a fighter.

There's Your Sign

June has a lot in store for us!

But first, I forgot to mention how it went with the graduate students in the vision program for the U of A. It was great and Christian was nice and active for the students. I was a little worried he might not perform for them. There are some days when he checks out and doesn't do anything. But that day he responded to what they were doing and some of the toys they were using. They got to come up with different ways to exercise his vision and brain.

In this picture, we used one of his toys (a musical piano that lights up when he hits the keys), and the teacher covered parts of the toy with black cloth. This was to allow him to focus on certain colors or areas of the piano. He reached over himself to the toy. I didn't think he'd react but he definitely did react to partially covering parts of the piano.

Then the students experimented with mirrors. Christian is generally pretty responsive to mirrors, as well. I've heard (and the teacher reiterated this) that mirror images can sometimes be overwhelming to kids like Christian because it's too much information to take in. So they will overt their eyes. Christian doesn't always react but when he does he seems interested in the little boy staring back at him.

So we tried it at home, too. In these pictures he's not looking into the mirror but he still looks like my gorgeous little boy.

All in all it was a great experience. It was only supposed to run about an hour but we stayed for 2 hours answering questions and telling the story.

So what's coming up?

Well...we're going back to Napa Therapy Center! And we're going next week! Ahhhh!

This is how it happened...

We were supposed to go in July for the full three week program. A few things fell through and didn't turn out as planned so we decided we'd at least go for a week. This would mean we'd have to go in June.

But the whole thing wasn't sitting right for me. I'm a huge believer that when things are right, they will fall into place. I kept feeling like this trip to California was forced. And I tend to get nervous when things are forced. I couldn't commit to the idea and wasn't looking forward to the trip.

So I finally just prayed about it. I prayed that God would reveal to me whether this is the right path for Christian or whether we should wait.

I shared my feelings with Manny and he agreed that maybe now wasn't the right time for Christian.

Fifteen minutes later my mother in law showed up with a check in her hand for Christian. Her friend, Rosa, had collected donations for Christian without us even knowing about it.

There's your sign.

I figured that was answer enough. I prayed again for clarity last night, woke up this morning, and felt like we should take him.

So we're off! Early Sunday morning we're heading to Los Angeles again for a week of intensive therapy. I'm comfortable with a week because we'll be able to see if Christian responds well to the therapy so we can make plans as to whether we'll pursue more intensive therapy in the future.

AMEN!

CPR

I've been looking for some diversity for Gabe. He's got a long summer ahead of him and all he really wants to do is sleep and play video games. Mmm, yeah, that's not going to work.

Well, I found some diversity tonight. I scheduled an infant and child CPR class for him and I to attend. It was time.

The thing is that Gabe was right there, literally the first one on the scene. He found Christian in the pool. He also witnessed his mother completely loose it and that had never happened prior to that day.

While I attempted CPR on Christian it was Gabe who dialed 911 and talked to the operator. My poor little man who's been through so much was able to be stronger than me. I'm ashamed of that because I should have been the strong one. I should have done a lot of things.

Anyway, to my surprise, he didn't protest when I informed him of our impending date a few weeks ago. So we headed out to the same hospital where both his brother and sister were born, which happens to be the same hospital we lived in for the two weeks while Christian was in the PICU.

I thought this would be a good idea for him because, in general, it's probably a good idea for everyone to be educated in CPR. I also thought it might help him to feel more secure.

I wanted to go for myself because at the time of Christian's accident, it had been ten years since I had any training in CPR. And things have changed since then - compressions and breaths and the like.

We attended the class and learned up to date compression to breath ratio. We practiced on dummies and watched detailed videos. But I have to say a few times I felt anxiety. I don't like that word but I felt a little uneasiness about it. Mostly because I was applying what I was learning to what I should have done.

Now, this is a warning that I'll be mentioning a few details from that day. So if it's just too much, I understand. Just stop reading right here.

I should have started compressions right away.

I should have used more force when performing compressions.

I should have remained calm.

I should have continued with compressions and breaths without stopping to scream.

I tried the best I could remember. I saw him gasp and I thought Finally! It's working! But then nothing happened. He just laid there. I gave him more breaths than were necessary because it was helping the water out of his lungs. I didn't know. I also learned in the class that the gasps aren't breaths, but they are reactions to the heart stopping. Again, uneasiness.

I remembered things I had buried like the way his cold skin felt when he laid lifeless on the tile floor. I didn't understand and I couldn't make sense of what was happening. This kind of stuff didn't happen to us. How could I have let this happen? God, please don't take him. I screamed it. I screamed, Oh, God!

I remembered that I reacted as if he had choked on something. I scooped him up off the floor, turned him over, and hit him between the shoulder blades like they show you to do in these classes when something is lodged in a baby's airway. It seems pretty ridiculous looking back. Nothing was making sense. All that time I could have been performing CPR. Maybe it would have helped. Maybe it wouldn't have made a difference. I guess it doesn't matter now. But performing compressions and breaths on a dummy about the same size as Christian with the same pale colored skin tends to jog one's memory.

And I remembered how scared Gabe must have been. It was like a bomb went off. Or like the floor in our house caving in and swallowing up our safe little, uneventful life. It was terrifying. I scared him, I think.

So I was really hoping that this CPR class was some kind of gift to him. Besides telling me he was hungry and that his thumb hurt during the class, he seemed to be as attentive as any 11 year old boy could be.

We talked about the class and the day of the accident in a very matter-of-fact manner in the car on the way home. That's where Gabe is comfortable - in matter-of-fact-land. He was glad he went because he could maybe help other kids that might stop breathing. I told him that maybe if I'd known CPR better, things may have been different and he said he didn't think so. Like a wise old man he said he thought at the time Christian couldn't have been brought back with CPR at the scene because the paramedics couldn't even revive him at the house. I've heard Gabe tell his black-clothed, skateboarding, hat backwards wearing friends with a little pride in his voice, "That's my brother...that's the one. He's the one who died and came back to life. He's doing better but he has to learn everything all over again..."

Swoon.

Who made this kid? Oh yeah, he's mine. Wow!

By the way, I'm looking at that same baby who was cold and lifeless on that tile floor almost a year ago. He's snuggled up right next to me breathing in and out slowly as he sleeps. I touched him and his skin is nice and warm.

If you're interested in taking CPR classes, contact your local hospital (ours offers these classes as part of there parent and mom to be education courses) OR contact your local Red Cross to get certified.

Life Goes On.

Today I found sand in a crevice of Lola's car seat. No doubt, remnants from our trip to the beach.

This month, the month of June, brings us to a very important landmark. You see, this is the month that marks Christian turning 22 months. This is the month we will have had Christian as he is now for longer than how he...was.

He was 11 months old at the time of his accident.

I was oddly looking forward to this threshold. As we approached it, I can say with confidence that I had already adjusted to Christian as he is now long ago. As such, this month was welcomed.

It was welcomed because it was just another step in moving forward. It was more symbolic than anything. This month is symbolic of us moving on. And one of the lessons that I've not only learned, but have also embraced is that life goes on. Plain and simple. 

I think of Christian as he used to be, but not as often. Mostly because whether there had been an accident or not, he would still have been developmentally completely different anyway. And now that we've had him as he is now for the greater part of his life, it is easy to accept that this is Christian. We loved him then and we love him even more now. It's no longer about how he was born and what he was like prior to last summer. It's about how he is now and what he will be.

Do I still get sad when I see pictures of him maybe I haven't seen in a while? Oh, yeah. But it now seems like a long time ago. And it's not a profound sadness, accompanied by a dark feeling of sorrow and grief. It's no longer a sadness that brings tears or that takes up the better part of a day. It's now a dull ache that's only allowed to stay for a tiny bit. Then it's time to move on.

On Memorial Day we took the kids swimming. Lola hadn't been swimming for about two months and she's decided she now thinks the pool is so much fun. She splashed and laughed and it was fun to watch. And there was that dull ache - remembering Christian's first time in the pool and just how much he loved it. He, too, splashed and laughed. That's when the memories come - memories that are joyful and painful at the same time. The definition of bittersweet, I guess.

It's really like finding that sand in the crevice of Lola's car seat. Amazing memories, but kind of sad we aren't there. We smile, clean out the sand, and move along with our day.

So I guess this is a happy anniversary of sorts. We're celebrating Christian in the present as he is. But, more so, we're celebrating that life really does go on. And that's comforting.