Friday, August 1, 2014

The End of an Era

It's hard to believe that it's been five years since we started Collin the Champ. In the beginning, I thought the blog would be a solution to a problem: how to keep people updated on the goings-on of Collin without spamming too many inboxes. But from the first entry, I realized it was also going to be a place for processing the uncharted reality of our new lives.

Now, though we are still defining our 'normal' as we go, we feel like Collin has outgrown Collin the Champ. He has become so stable medically and his life is about much more than doctor and therapy appointments. We're doing less updating and more living these days, which is a very good thing.

So, starting next week, Collin the Champ's blog will be retiring.

There are no words to express the value of the love and support we have received from those of you who have followed Collin's struggles and victories these past five years. It's been a surprising and priceless gift.

Thank you so very much for walking this road with us.


Yes, folks. That's a mohawk.
He's peeking at you to see if you like it.
Some sidewalk chalk art a la Heather and Collin.
It's a portrait of our family thanking you.

Tuesday, July 8, 2014

State of the Collin

Without our beloved Heather (two more weeks!!), the summer has been a bit of a blur around here.

1. Collin had a slew of appointments, but nothing more resulted than 'watching' and 'tweaking'. Sometimes I'm still overwhelmed with gratitude to be in this long period of relative stability.

2. Collin and I were guest speakers at a ketogenic diet conference at our local children's hospital. The attendees were primarily doctors, nurses, and other health professionals and we had such a great time sharing Collin's story, how we 'do the diet', and answering all kinds of interesting questions. We're thinking about taking our act on the road.

3. Just like every good summer, this one has been packed with fun and relaxation already. Here is proof.

Peas in a pod.
Trying out the playground at our pal
Grace's birthday party.
Sunday morning on the patio.
There's no nap like a pool nap.
Walking the pedestrian bridge.
Cousin time.
Blueberry picking.
Collin supervises. Closely.
Happy Fourth of July!
Firecrackers! (Daddy is running from the flames off camera.)
My faves.


Friday, May 23, 2014

Collin's Chore

Everybody pulls their weight in a happy household, and Collin is no exception. He sometimes keeps me company in the kitchen or cheers me on while I vacuum (I have never in my life seen a kid so enraptured by a vacuum cleaner), but his primary responsibility is getting the mail.




In our current living situation, that involves hopping on the trusty tricycle, leading Mama to the mail area, impatiently trying to ride away while she gets the mail out, pedaling around the bank of mailboxes three to twenty-seven times, and then carrying the mail home.




His favorite part of this job, by far, is riding around the bank of mailboxes. It must be some combination of the super smooth concrete and the shade and the mailbox pattern flashing by, but he rides it like his own private racetrack. We've only had a couple of close calls with neighbors trying to get their mail during race time. One of these days hopefully he'll get interested in steering.

Thursday, May 15, 2014

In Other News

It's not that I forgot to mention the fact that Collin is standing up by himself. It's more that I was waiting around, hoping it was a real thing and not a fluke.

It's real.

It all started about a month ago when Collin suddenly decided he loved his treadmill therapy again. His leg movements got all reciprocal (left-right-left-right) and his intensity was off the charts. So, we decided to run with it and started an intense burst of treadmill therapy.



Around the same time, we got a new kind of orthotics (we like to call them 'standing shoes' around here) that use a different material and design to create compression on Collin's feet while also freeing his toe joints to move more naturally. Almost immediately, we knew something was working.

First, there was this.



Then there was this. He has help from the harness if he falls, but he's bearing his own weight and using his hand to brace himself.


And then there was this when I came home from running errands last week. I won't insult anyone's intelligence by trying to describe what it was like.








And our Upsee should be on its way any day now. Hold on to your butts.

Friday, May 9, 2014

How It Went

We made it. And we've (mostly) recovered.

I must admit, it was the best sleep study we've had so far. Collin is overall just a better sleeper, which helps tremendously. Also, we had some very good nurses and a better plan this time. Plus the fact that Cincinnati Children's is just a wonderful facility and things tend to go about as smoothly as possible there.

Part way through the gearing-up process,
hanging with his special friend, Mr. Bear.
(Thanks Aunt Carol! See you soon!)
BUT. The sleep study is just not a well-designed system, and that's all there is to it. It doesn't create a natural sleep environment and necessitates multiple sleep disturbances throughout the night. For a test intended to assess the quality of sleep, that seems a little counterintuitive to me.

We turned the lights out around 9:00 pm and it wasn't long before I was out of bed half a dozen times because of a nurse or sleep tech entering the room. With a flashlight. I stopped keeping track pretty quickly because it was just making me grumpy(er), but there had to be nearly 20 similar instances over the course of the night. Somewhere around 2:00 am, I started to wonder whether it would ever really be over.

It's not necessarily the fault of the nurses or techs. They have to make sure all of the equipment is functioning properly so the study is as accurate and helpful as possible. And pseudo-gluing dozens of sensors to a squirmy, head-rubbing 5-year old is a lesson in entropy.

Collin's bank of monitors. You can't tell
from this how luminously they glowed in
his face.
But 6:00 am did come. The tech couldn't tell us anything about what he did with Collin's BiPAP settings overnight, except that he never had to use oxygen. A sleep study is a very long and complex study to read, so the report won't be ready for a couple of weeks.

Four days later, Collin still has adhesive collecting lint in various places on his body and we're all still a little off in our sleep routines. But we're glad to have the test behind us, looking forward to hopefully learning something helpful from the report, and thankful to have access to quality healthcare for our boy.

Sunday, May 4, 2014

Sleep Study, Take 12

OK, we haven't done eleven sleep studies. But we might as well have.

In my experience so far, sleep studies are more studies in torture than in sleep. There was the one with the arm splints. The one where I stared at the CO2 monitor for 6 hours. The one with the 15 attempts to adjust an ill-fitting BiPAP mask. Lots of things happen in Collin's sleep studies. One thing that doesn't happen very much is sleep.

And I admit that I dread them. Not only are the studies themselves nerve-wracking, but the outcomes are difficult. They involve wrapping our minds around a new stress (your child doesn't breathe on his own at night) or introducing a new stressful treatment (strap this high-pressure machine to his face and see if it helps).

The amazing thing is that it's actually been three years since our last sleep study. The actual rule with the Aerodigestive team who treats Collin is that sleep studies should be repeated every two years as long as intervention (oxygen therapy, BiPAP, etc.) is being used. But I confess that when our pulmonologist left and the new one somehow believed our last study had been one year previous instead of two, we didn't enlighten her as to her mistake. Collin had FINALLY adapted to his BiPAP machine and his episodes had spaced out considerably and we had a few months of normal-ish sleep under our belts and we would be DARNED if we were going to give that up for a silly little rule. Instead, we bought another year.

So tomorrow we're heading to Cincinnati for a three-year follow-up sleep study. This will be a titration study, in which Collin will use his own mask and be hooked to a BiPAP on his own settings. Then throughout the night, the technicians will start fiddling, dropping his level of support and monitoring his reaction to their adjustments. Given its nature, we're cautiously optimistic that this study won't be as terrible as those in the past.

The ultimate goal, of course, is for Collin to be able to sleep without a BiPAP machine one day. As with so many other Collin-things, though, nothing we do really affects whether or not that will happen. The role of the BiPAP is to give him only the help he needs as long as he needs it. All we're hoping to find out from tomorrow night's study is that he doesn't need quite as much help as he used to.

Thursday, April 17, 2014

Why Does Collin Do That? - Part 3

This one is more of a Why Does Collin HAVE That? than a Why Does Collin DO That?

Why Does Collin: Have a Red Nose?

Collin uses a BiPAP machine while he sleeps to keep his breathing regular and deep. Why? Because he has central sleep apnea, in which his brain sometimes stops telling his body to breathe while he's sleeping. The mask he uses is very small and well-designed to make it as comfortable as possible and it only covers his nose.

Collin modeling his BiPAP mask.


The BiPAP machine works by using pressurized air to stimulate Collin's breathing. So, for 10-12 hours every night, his cute little nose is under pretty substantial pressure. The result? Red nose.

So, no, he does not have a cold.

And yes, we have heard that Rudolph joke before.


Thursday, March 20, 2014

Why Does Collin Do That? - Part 2

Why Does Collin: Keep His Eyes Closed?

The trick answer is that he doesn't. Ninety-five percent of the time when Collin's eyes look closed during waking hours, they're really open a tiny slit.

But why?

1. Size
Collin's eyes are just small. Like his dad's. So even when they're "wide" open, they look small. I love to tell the story about when the neonatologist wanted to run some tests on Collin in the NICU because some of his facial features - especially his eyes - were indicative of particular genetic disorders. Then Kyle walked in the room and the doctor looked at him and said, "Nevermind."

2. Light
Collin is super sensitive to light - both bright lights and changes in light. One sunny morning after a big snow this winter, I stepped outside quickly to go get something but had to stop in my tracks. The brightness of the sun on the snow was so blinding that I literally could not make my eyes open. I had to just stand there, waiting for my eyes to adjust and as I did, I thought, So THIS is how Collin feels. Except a lot of the time. He has transition lenses in his glasses, which have helped somewhat, but they are activated by UV rays and so don't help in a brightly-lit indoor setting. When he was a baby and on all of those hellish anti-epilepsy meds that made him even more irritable and sensitive to everything, he simply didn't open his eyes at all. Now, at least he keeps them open whenever he's awake, though it doesn't look like it to many people. And when the lights go down, the eyes come open.

3. Overwhelm
Collin is cortically blind. This means that even though his eyes can see something (pick up the signal of the image and send it to the brain), his brain can't necessarily see it (process it into something that makes sense). This has improved quite a bit over the years, but I remember our very first vision therapist explaining that seeing for Collin is as exhausting as physically using his muscles. Imagine having to work out all day every day.

So keeping his eyes mostly closed limits what he has to process. It's a bit like when you're watching a really intense scene in a movie and you put your hands over your eyes and peak out from between your fingers (come on, I know it's not just me): having that visual framework makes the intensity feel more manageable somehow and also keeps you that much closer to blocking things out when they become too much.

This is part of why an iPad is so crucial for Collin. It draws a line around what he has to make sense of. Many people notice that when the iPad comes on, Collin's eyes open wide. It's not because he isn't interested in anything else (though I'm sure there's an element of that - he IS a five-year-old, after all), it's that it is so much easier for him to understand what he sees on a screen with a border.

4. Habit
When you are used to doing something one way since the time you were an infant, it's hard to break out, regardless of how you might change developmentally.

Add the closed eyes to the low-tone body and you get thousands, maybe millions, of comments about Collin being sleepy or asleep. As you can imagine, it is rarely a good time to explain all of this, so I just smile.

I know that Collin's closed eyes are really hard for some people. I understand it. So much of our interaction with kids is dependent on their big eyes, on getting them to look at us. And that just doesn't come naturally or easily to Collin. But, by understanding the reasoning, it gives you a chance to take steps to help him if you want to get that eye contact:

1. Lower or block out the lights. You can turn lamps down or off. You can turn him away from the sun or other bright lights.

2. Get close and hold still. If you want Collin to look at you, make yourself as easy to process as possible. Get your face about an arm's length away (his arm, not yours) and stay there. Talk and/or make funny faces and sounds to help him focus.

And please don't get antsy or feel deflated if it doesn't happen right away. He isn't sleeping or ignoring you. He really does want to look at you. He just needs help and time.

Tuesday, February 25, 2014

Why Does Collin Do That? - Part 1

Part of getting to know a person who is very different from you is learning their signals. Someone from another culture or even another generation might use gestures or facial expressions that are hard to understand at first. You might even mistake those actions for something else entirely until time and experience reveal the true meaning.

Collin has lots of these unfamiliar signals. It is very common for people - even people who know him relatively well - to think that he is asleep, that he is yawning, that he is pouting, when he is not. They are just using their own experiences to try to interpret what they are seeing.

Many of the things Collin does, I don't have a clear answer for either. The things I have figured out are from years of close observation and from my Mama powers. But here is a little series on a few of the mystifying things Collin does that we can actually explain.

Why Does Collin: Make That Face?

You know the face. You've seen it in a hundred pictures on this blog by this point. Sometimes it seems clear that it's excitement, sometimes you can't tell if he quite likes whatever is going on. When people see it in person, they often think he is yawning. Because why else would someone open his mouth THAT wide for THAT long?







Think of this as Collin's "Wow Face".

Look at yourself in the mirror and say "wow." Say it like you mean it. Now stop half way through. See? Wow Face.

Some things Collin's Wow Face might mean:

"Wow, that light is bright."
"Wow, that is awesome."
"Wow, that is loud."
"Wow, you scared me."
"Wow, I'm excited."
"Wow, that is way too much."

I get that last one a lot.

Obviously, part of the Wow Face is often rubbing of the ear or bringing his hands up by his face, with some finger-wiggling if things are particularly intense. Sometimes this is a self-calming thing (if it continues once the face is gone), but most of the time it's just part of the gesture, like squinching your eyes when you smile. Try smiling without moving your eyes at all. Weird, right?

So there you go. A small but important piece of the puzzle. Maybe not a corner piece, but definitely an edge piece. Once you can recognize the Wow Face, you have something to build off of in interacting with Collin one-on-one. You can try to figure out what he is saying 'wow' about and either stop it or keep it up.

Is there anything Collin does that you would like interpreted? I can't make any promises that I know the answer either, but I do like to know what other people are curious about.

Friday, February 21, 2014

Dreams

There is a phenomenon that happens around here every so often and surprises me every time: I get a text or an email or a call - sometimes even from someone I haven't spoken with recently or who rarely hangs out with Collin - telling me that they have had a dream about Collin. In these dreams, there are two common factors:

1. Collin is almost always doing something he can't do in 'real life', and

2. Some kind of understanding is reached between the dreamer and Collin

I listen to these dreams with a fascination that is part wonder and part envy.

I don't dream about Collin often. When he was a baby, I had dreams of him in some kind of danger - in deep water, just out of reach - but since then, his appearances have been rare. But this song just popped up on Collin's Pandora station and I had a vivid flashback to the most recent time he showed up in my dreams.

I was in a field at the foot of a mountain. It was windy and the clouds were making wild, racing shadows on the grass. I wore a long dark skirt and no shoes. I was running. And Collin was chasing me. His run was toddler-ish, with crazy legs and straight arms. He was concentrating, his tongue out, looking down at the ground instead of where he was going, like little runners do, but he was never far behind me; his eyes were crinkled with fun and he would break into a smile as he caught up to me. I suddenly realized that he was much faster than I had thought and I had to hitch up my skirt and start really running to keep him from catching me. It got me tickled and I was laughing so hard I could barely keep going.

And that's all that happened, for what felt like a long time. When I woke up, my heart was thundering and I started crying - not because the dream was over, but from the intensity of the joy, which wasn't just from Collin running. It was the understanding between us that he knew where I was and was coming to get me.

When I told Kyle about it, he said, "It sounds like heaven." That was exactly what I thought. Like I got a glimpse.

Monday, January 27, 2014

Snow

There is a special magic when we figure out a way to make common things happen that we weren't sure we would ever get to do. It is all the normal wonder of a special first, but backlit by the glow of redemption.

Saturday, Collin went sledding for the first time. We used a gigantic sledding tube that he fit in perfectly. I was nervous at first, but he made it clear that, as usual, faster and crazier is much better.

This weekend was the first time this winter that I found myself wishing it wouldn't warm up so fast.

First Sledding Adventure from Annie Kratzsch on Vimeo.







Wednesday, January 22, 2014

How to Help Kids Interact With Collin

Two of the posts I've gotten the most feedback on are this one about how to interact with Collin and this one on how to interact with us.

And one of the posts I've gotten the most requests for is the one I'm writing.

The problem was that I didn't have any advice to offer because I hadn't had sufficient experiences to draw from. Collin isn't in many situations with typically-developing kids yet. His most frequent hang-outs are with his cousins, who have always known him, have no questions about him yet, and adore and include him. While that's a beautiful thing to witness, it doesn't help with teaching children who are unfamiliar with kids with special needs. (Unless the cousins are present, that is. In that case, they teach far more poignantly than anything I can write here just by their example.)

Over the past months, though, a string of surprising and wonderful experiences have given me a chance to observe and think through what it looks like for kids to interact well with Collin. It's not always what I expect and the range is wide - everything from looking intently at him to asking a thousand questions to learning what makes him laugh and doing it ad nauseum - but there are definitely common threads.

Here are the two main takeaways:

1. Kids follow their parents' lead.
Whether you smile nervously from a distance or say, "Hey, there's Collin! Let's go say hi," your kid will pick up on it.

2. Kyle or I will inevitably be there to help.
You don't have to go this alone and you certainly don't have to have all of the answers. We don't have them all either, but we'll work together to make this the best experience possible for everyone involved.

And on the more practical side of things, here is a random list of suggestions I have formulated by observing people who taught me what to shoot for by doing it really well:

1. Don't shush.
It is well intended. You don't want your child to say or do something offensive. But there are few things more confusing for your child or more isolating for mine than to discourage looking/talking/asking about Collin. It confirms that something is different without the accompanying truth that different is fine and even good. Usually, this response is seated in the adult's unease with the situation. We don't like to be asked questions we don't know the answers to, especially in front of the person the questions pertain to. Let me encourage you, though, to take a deep breath - just like I have to - and step into this, trusting that it's worth any discomfort.

2. Let the questions flow.
This is the next stage of the last one. Once the questions start coming, it will usually be a while before they are satisfied. Let them come and answer them the best you can. Sometimes they will make your guts clench. Sometimes the answer will be "I don't know." Sometimes the answer will be, "Let's ask his mommy." But when it comes to young kids, it's important to show that there are no questions they can't ask.

3. Look for common ground.
It's not as hard as you might think. Collin loves swimming and riding his bike and watching movies. He likes books and music and drawing pictures. He might do it differently or need more help, but I find that that's not nearly as big of a deal to kids as the fact that he likes it or does it at all.

4. Encourage sharing.
Collin can't talk yet, but he loves to listen and he especially loves to listen to kids. Encourage your child to tell Collin about his trip to the zoo this week or about what she did at school today. He wants to hear about favorite cartoons and favorite toys and favorite places to go. This also naturally takes care of #3 many times, because it gives us the chance to say, "Really?! Collin loves that cartoon too!" and "You like to swing?! Collin loves to swing so much that he has a swing in his room!" and so on. It also gives us the opportunity to be interpreters/teachers. As they're talking, we can say, "Look, Collin is showing that he likes listening to you," and point out how. Or, "Look! That's how Collin tells you that he's excited! What do you do when you're excited?"

5. Be patient.
Your child might not want to be best friends with Collin, and THAT IS OKAY. They might be weirded out by his wheelchair and THAT IS OKAY. Don't be disappointed and don't try to force anything. You may find yourself fielding questions later at home. You may choose to bring up Collin at a time when you feel comfortable talking more openly. Some kids need more time. The important thing is the open dialogue and that it is teaching openness over fear, genuine interest over dismissal.

I will never forget the first time a non-family-member kid asked if they could sit next to Collin at dinner. Never. But that question only came after six thousand other questions and after watching us and her parents love on Collin and play with him.

We are far from experts at this and there is still a part of us that dreads these interactions every single time - because they are not easy. But few of the really good things in life are. And we know it is 100% worth it to work through the awkwardness to get to the awesomeness.

Thursday, January 9, 2014

Something From Nothing

I sent this video to Collin's developmentalist for his last NACD evaluation.



If I try hard, I can imagine what this might look like to someone who doesn't know Collin or who isn't familiar with any kids who have CP or other special needs affecting movement: random, uncontrolled, maybe even sad.

But when I first saw it, I knew it was something big.

Of course, my first reaction was a gut-clenching thought that that big thing was seizure activity. Even after all of these years, it's a fear I can't shake.

But once I realized that he was perfectly aware of what he was doing, I watched him closely a few times and then looked for a chance to capture it and show it to someone.

When I skyped with the developmentalist, the first thing he told me was the word he had written down when he saw the video: typical.

Not movement resulting from wonky tone issues or just random brain activity. But muscles moving in direct response to messages from the brain.

To give you an idea of what a big deal that is, I have to take you back to Collin's younger days. I remember an early intervention therapist coming over and trying to motivate Collin to do something. She didn't say or do anything earth-shattering, but as I watched her doing all of the movement for him, I thought, "He can't hold his head up. He doesn't even know his head is there. He can't do any of the things that come with no effort to typical kids. Other kids have instinct and natural development as building blocks for developing skills. How is he supposed to find any motivation to take even the tiniest first step? It's like asking him to come up with something from nothing."

And so it has not been the walking or the talking that has preoccupied my thoughts when I thought of Collin's development over the years. It has been the discovery of his own body, of his ability to control it, and his consequent discovery of the world around him. In a word: motivation. The movement of eyes toward a face. The flick of a finger on a piano key. The conscious movement of arms and legs.

It's true that he's done things in the past that seemed to showed bodily awareness - standing, riding his tricycle - but they have all been things that were initiated by cues from me and only involved a few muscle groups. They were responses. This is self-driven exploration.

Something from nothing.

Thursday, January 2, 2014

Happy New Year!

We're back from our holiday hiatus! Here are a few things Collin did in November and December:

One of Collin's all-time favorites: feeding the ducks.
Picking out the Christmas tree.

Decorating it. (Well, supervising.)

Christmas fun with the cousins.

Christmas morning!

Ringing in the New Year with a viral infection and
impending pneumonia. Boo.