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!