Tuesday, December 25, 2012

Merry Christmas

 We're low key here today. Collin is still having a pretty hard time with his virus. He has developed bronchiolitis and is on an antibiotic and lots of breathing treatments. He is mostly struggling with managing all of the congestion, which leads to lots of retching, which leads to not much breathing at times. We decided to postpone our Christmas celebration until this weekend, when he (and we) will hopefully be able to enjoy it more.

Merry Christmas and many thanks to all of you who are walking this road with us.

Sunday, December 23, 2012

Christmas Cough


This isn't Collin today. He didn't want a picture of himself on the interwebs this morning because of his glassy eyes and snotty, red (Rudolph-esque) nose. He has done a bang-up job of coming down with the cold Kyle and I had over the past couple of weeks and tried so painstakingly to protect him from. It's been a good excuse to stick close to home and have lots of relaxing Christmas family time, but his cough seems to be getting worse, so we broke out the nebulizer and have a call into the pediatrician. Here's hoping for a  quick turnaround.

Wednesday, December 19, 2012

Walking the Line

Collin and I colored a picture this morning. Today, that involved me holding a crayon in his hand, scribbling it for a few seconds, and trying to see if I could feel him participating in any part of the process - either the grasping or the coloring - so that I could back off incrementally and let him take over.

Well, let me back up. It's not that simple. Collin was standing in his stander so that he can get weight-bearing on his bones and in his hip sockets; this makes it more likely that he will develop physically in such a way that will allow him to move independently one day. He wore special braces to give him ankle support and provide sensory input to his feet so that his brain can feel that they're there. He was looking particularly almost-4-years-old-ish in his camo pants, purple Buddy the Bat baseball t-shirt, and yellow long-sleeved cheeseburger shirt; under all of this, he had on truck undies because he hasn't had an accident in weeks and his diapers have been falling to pieces by the end of the day from never getting changed. He also had on a terrycloth bib because being upright and looking down at what he's doing makes it really hard for him to swallow his drool since he doesn't have great control over the front of his mouth. Because he can't use his mouth, he also had an extension and syringe hooked to his g-tube, giving him his morning water bolus. I had already done warm, wet compresses and deep pressure on his hands to make his brain more aware of them and let him play in dry beans to get some finger movement going. Even with all of that, he just wouldn't or couldn't grasp this morning. With the exception of a couple of random streaks, he didn't do any of the coloring himself. His vision was on fire, though. He stared at the thick black outline of Santa Claus and every time I held up a new color of crayon for him to see, he found it with his eyes in no time. At the end, when I presented the finished product for him to admire, he pressed his hands against it (the hands he hadn't been using this whole time), took in the entire picture, smiled, and drooled on it and me and himself.

It was so frustrating. And we had a great time.

It reminded me of a conversation Kyle and I had last week. We were sharing some dreams we have for Collin, as well as things we struggle with in parenting him day to day. I said that on the one hand, I feel like I have to fight ferociously and without stopping to give Collin every opportunity to develop in new ways - to push him to become as independent as possible; on the other hand, I feel like I have to accept Collin exactly how he is - to be content even if he never learns another skill the rest of his life. When Kyle asked (somewhat rhetorically) which it has to be, I immediately answered, "I think it has to be both. Both, all of the time."

It's a line we walk. But we don't walk it like a tightrope, trying to keep from falling to either side. We walk it like a kid on the edge of a sidewalk, head down, concentrating, making sure one foot stays high and one low, because if we're not in both places at the same time, the experience is not as good. In this way, we use the line as a guide rather than a boundary. It keeps us on both sides of the paradox -  celebrating the good without idolizing it, accepting challenges without giving in to them, longing for more and loving what we have.

Thursday, December 13, 2012

Maddie


We said goodbye to our friend Maddie last week.

For a variety of reasons, her brain was no longer telling her body to breathe and her parents, advised by her care team, made the impossible decision to let her go. They made her comfortable and surrounded her with love till the end.

Maddie was deaf and blind. She had low tone and fought seizures. But what characterized her more accurately was that she had a beautiful, fiery spirit - just like her mom, Debbie, who was one of the first people to reach out to me when we started finding out about Collin's challenges. I remember Debbie telling me a story about how a thoughtless comment had made her want to punch someone in the face. Somehow, I got so much hope from her sharing that raw emotion; likewise, watching her family live a full, happy life helped me to see that our future could be just as bright.

We are so sad that Maddie is gone, happy that her suffering is over, aching for her family, and incredibly thankful for her very real impact on our lives. It's an awesome and complicated mix, just like her.

Monday, December 3, 2012

A Smile for Your Monday

Today was Collin's last PT appointment before our big holiday and his beloved therapist sent home a gait trainer for us us to experiment with over the break. When it was time to go, she spontaneously asked if I wanted Collin to walk the walker to the van.

By this point, he had been in walkers and gait trainers for an hour, so his legs were pretty much dead, but he was still completely holding himself upright from the torso up, almost as if it felt natural to him. It was the warmest December day I remember and the breeze was blowing and the sun wasn't overly bright so his eyes weren't freaked out. He genuinely enjoyed himself and seemed totally aware of what he was doing.

It reminded me in a way of the day Collin rode in the grocery cart for the first time, in that he didn't do it at all like other kids, but the end result was such a beautiful, warped version of normal that it took my breath away.

Walking to the Van from Annie Kratzsch on Vimeo.

Friday, November 30, 2012

Joyeaux Noel!

Thanksgiving Break was good for Collin. About halfway in, he started taking weight on one leg and by Monday, he was standing on both legs again for short periods. As I've talked about before, I don't get a lot of straightforward communication from Collin, but I'm taking this as his way of telling me: Seriously, I need some down time.

And why not?! Other kids get all kinds of breaks throughout the year to not think about work and sleep in and get their sillies out and just be kids.

So, we're going to run with it and make this Christmas season a true holiday (in the break/vacation sense of the word) by doing it up European style. We will be taking off the entire month of December from therapies and all unnecessary appointments. No leaving the house unless it's to do something fun.

Not that Collin is not going to be laying around the whole time. We still have our at-home program (which will probably get a little lax over the next few weeks, too) and I have some plans for working on his oral feeding skills, among other things. But this move will free up hours of time and loads of energy for fun and rest and exploration.

It's also going to be really good for me. I was looking through my camera roll on my phone this morning and realized that well over half of my pictures are of therapy sessions. We haven't had a true break in a long time and I'm pretty burned out. My day-to-day rest strategies aren't cutting it anymore and I'm getting worn down, so it's time for more drastic measures.

I can't say that I don't have my doubts and nagging guilt about it all. Nothing is that simple, especially when you have such a complicated kid. I always question myself when a decision involves skipping something beneficial for Collin (even if I know that in the big picture, skipping it will be beneficial). I wonder if it's me being selfish and imposing my wish for a break on him. I wonder if I'm misinterpreting and something more serious is going on. I wonder if people will think I'm crazy.

But then I take a deep breath, I remember that I have the full support of Kyle and all of Collin's therapists, and I listen to that small but persistent mama voice telling me to put down that orthotic and take Collin to the zoo.


Tuesday, November 20, 2012

Thanksgiving Break

It's been a bit of a rough week. Nothing big, just enough small things to make the days difficult. One of the strangest is that, for no discernible reason, Collin stopped bearing weight on his legs last week.  He won't stand at all, no matter how much I help him, particularly when it comes to the potty. Aside from the fact that this makes my days much harder physically (I need all the help from him I can get), there's the concern that comes along with any change like this. What in the world is going on? He doesn't act like he's in pain, and he is still super active in terms of kicking. Could it be a plain old 3 1/2 year old thing? Just a phase of some kind? A physical issue? A neurological issue?

On top of that stress, Collin and I were just getting weary from too many therapies and too much running. So, I'm taking my own advice (at Kyle's urging) and taking a break. So far, we've been watching videos, reading books, playing piano, and cuddling a lot. It's a Thanksgiving break not just because the holiday falls this week, but also because I'm trying to be intentional about spending time giving thanks for Collin - not only his developments, but just who he is. I have such a tendency to dwell on and worry over the things that aren't 'right' rather than enjoying the abundant good. Here are some things I thought of today:

- Collin smiles and laughs every day. We didn't know if he would ever smile at all.

- Collin is a wonderful listener.

- Collin is somewhere between 50 and 75% potty trained. (100% when it comes to pooping - HOORAY!)

- Collin is much stronger than we ever expected he would be and his tone is so improved that the doctors are now only calling it 'slightly low.'

- Collin is fully adapted to his bipap, which allows him to sleep safely and with good oxygen levels through the night with only a couple of brief awakenings.

- Collin has had seizure control with NO MEDS for 2 years and 5 months.

- Collin took 3 steps all by himself in his TAOS walker and we have no reason to believe he won't do it again.

- At our last appointment with Dr. Awesome, he explained to another doctor that "Collin has come a LONG. WAY."

- Collin is super handsome.

I'll spare you the full list. We all have other things to do today.


Thursday, November 15, 2012

Yay Fall

Fall is our favorite season around here and we've been so busy enjoying it this year that I haven't been able to update as often as I'd like. Here's a bit of what we've been up to:

Striking a pose.

A kind lady gave Collin a pumpkin at
the farmer's market.

Collin was a Green Bay Packers player for
the awesome Halloween party we went to.

He was a skeleton for all of his therapies
on Halloween, but I forgot his sunglasses
for the car ride, so he had to borrow mine.
(I also forgot to put on his skeleton hat
for the picture. Oh well.)

In the cool stick maze at Bernheim Forest.

Picking pumpkins.

Sunday, October 28, 2012

Initiation

Let's start this off by stating the obvious: there are a lot of hard things about being a parent of a kid with myriad special needs. I don't spend as much time thinking about that as I used to, but every once in a while a particular struggle will bubble to the top of my mind and kind of bob there. I've been mulling this one over for a while now, trying to figure out how to put it in words.

As the parent who is home with Collin all day, I sometimes face a unique set of issues. Many are logistical: How am I supposed to go to the grocery with Collin when I don't have childcare? How can I minimize my lifting of Collin while still keeping him engaged and active? But others are very much mind/heart issues. Am I giving Collin enough free time, or does he need more structured therapy time? Does Collin really know/care that I'm here?

The particular issue I've been thinking through is a strange combination of both. It's something that challenges me deeply and impacts most of the minutes of my day. It is simply the fact that every interaction, every activity, every everything in our entire day is initiated by me.

I read an article once by a mom thinking through why it is so hard to be the mother of one newborn. She explained how draining it was to be home all day, alone but not alone. To have no one to talk to, for each day to be centered around the anticipation of the unspoken needs of another person. It's draining in a way that is different from most other life phases and it is a fairly good picture of what I'm trying to get at here. Except that I have no idea when or whether this phase will ever end for me.

I'm an introvert; I get energized by alone time. But the vast quiet I am filling every day is not the same as alone time. It's an ongoing invitation (that sometimes feels more like expectation) to be the extrovert, to be the energy in my environment. I prefer to listen and respond. But if any words are going to be spoken in a day here, they have to be by me. And they have to be spoken with the knowledge that I will get no answer of any kind.

When I hear other moms of young children talk about the onslaught of questions, the harnessing of 3 (or 4, or 2) year-old energy, I listen not with bitterness or even much sadness (I am thankful to say), but with a kind of bewilderment - like learning about a different culture for the first time. And just like I might imagine what it would be like to live in a Mediterranean fishing village, I wonder what it would feel like to 'have to' chase a toddler or answer a barrage of requests or feel the need to read one of the dozens of pinterest pins on how to distract a preschooler.

When I ask Collin what he wants to do next, what he wants to watch, which toy he'd like to try, it's really a question that I will be answering for him in a few seconds. That answer will come from a guess formed in my own mind based on what I perceive to be Collin's reactions to dozens of other instances in which I also picked what we would do next.

And I'm not always great at it. There are times every day when I realize that I've pooped out on talking and slipped back into doing without saying. I wonder what this must feel like for Collin, who has great hearing but not great vision to help him understand what is going on during those quiet times. So I summon my energy and drag my brain back into the vocal world, trying to engage Collin in the string of daily activities that he is unable to choose whether or not to participate in.

Even when our fabulous helper, Heather, is here working with Collin and interacting with him with her trademark tender enthusiasm, my brain just bumps up to a different, bigger-picture level of constant initiation. Heather and Collin spend their time on a schedule I devised (and continue to revise) to establish some kind of rhythm and structure in Collin's days. I think through his diet based not on what he likes or will want to eat (oh, to have a picky eater!), but on what I think he needs to keep him nutritionally balanced and in proper ketosis. I look for apps that might engage his newly developing fine motor skills, books that might stimulate him visually, crafts that might interest him sensorily.

All of this adds up to an exhausting pressure. If I need to take care of something else, that means Collin is stuck wherever he happens to be. If I choose to sit down and read for a few minutes, that means Collin is either lying by himself on the floor or sitting by himself with a video. Wherever I am and whatever I am doing, I am always wondering what Collin is thinking and whether he needs or wants something different. Should he spend some extra time in the stander today since he's had so many doctors appointments this week? Is he enjoying this app or is he ready for another one? Would he be more comfortable laying on his tummy? And if I decide that he does require a change, it's up to me to make it happen. Because he can't tell me or ask me or do it himself.

Now. Here's the part where I reiterate how beautifully Collin enriches my life and how many kinds of joy he brings me. He is remarkable. I love being his mom. But that doesn't mean it isn't hard. Just like the hardness doesn't make it less awesome.

Tuesday, October 23, 2012

Collin Has A New Cousin!

She's almost a month old, so the news is a bit on the old side, but we spent most of the first weeks unable to see each other because of germs, so he's really only hung out with her a few times. Her name is Kate, and Collin kind of likes her:


And of course there's always the old cousin, his best bud Ila:


He's a lucky kid in the family department. Although, after hanging out with his lovely second cousin Claire this weekend, he did mention someone throwing a boy in here at some point. 

Friday, October 19, 2012

Some Surprises

It's been a busy few weeks around here with what feels like more therapies and doctors than normal. True to form, we had some surprises at even the most routine appointments.

1. Due to Collin's elevated heart rate (which we only found out about because of that dang pulse ox - I have a major love/hate relationship with that thing) and his poor circulation, we decided recently to go see his cardiologist. We had been discharged 2 years ago when Collin's PDA and PFO issues resolved, so I was expecting the doctor to listen to Collin's heart, tell us whether or not it was okay, and proceed from there. Instead, Collin had an EKG and an echocardiogram, which revealed thickening of his aortal valve and dilation of his aorta. The doctor assured us that it is nothing to worry about now, but he does want Collin to get 'back in the rotation' so he can see whether it is a static or progressive issue. It is not affecting the function of his heart in anyway and, in fact, the Holter monitor Collin wore for the next 24 hours showed completely normal and healthy heart activity. So, the thing we went in for was a non-issue and the thing that was discovered is, at this point anyway, a surprising but minor issue.

2. Our trip to the dentist for Collin's 6-month teeth cleaning was strangely similar in outcome. Because Collin doesn't eat by mouth and we brush his teeth twice a day, I expected another in-and-out appointment. Instead, the dentist almost immediately found a loose tooth. My first thought was, 'Oh no, his grinding is making his teeth fall out.' But the teeth that bear most of the brunt of his grinding were rock solid. On a hunch after finding two more wiggly teeth, the dentist took a couple of quick x-rays and found that Collin's adult teeth are coming in. I'm sorry, what? Yes. Collin is starting to lose his baby teeth at 3 1/2. The earliest the dentist had ever seen was 4 years old, but these teeth are barely moving, so he may be close to 4 by the time they actually come out. Brace yourself, people. The only thing cuter than a Collin has got to be a Collin with missing teeth.

3. We added a new physical therapist to Collin's weekly schedule to complement his work in the pool and on the horse. The therapist is truly fantastic and in our first real session, she wanted to put him in a harness that would help him to walk on a treadmill. I admired her pluck, but had no expectations other than for him to curl up in a ball of freaked-out-edness. It was amazing to be so wrong. Almost immediately, he started feeling for the treadmill with his feet. When it turned on and the therapist started moving his feet, I felt like I was literally watching the pieces fall into place in his brain. The longer he walked, the better he looked. His torso got straighter and straighter with minimal effort; his head naturally came to midline and looked both left and right, depending on what he found interesting; his arms were completely relaxed and held on to the grip bar or swung at his sides. I can barely keep it together just writing it. It was like the movement made his body say, "Now THIS makes sense!" When the therapist let go of his feet to give him a break and let him explore, he started out swinging himself above the treadmill, then letting his feet drag so he could feel the resistance, and by the end of the session (which was HALF AN HOUR ON THE FIRST TRY) he was obviously trying to take little steps on his own. And do I have pictures or video of this miracle? NO I DO NOT. Because my CAMERA BROKE and I didn't have a NEW ONE YET. Which is INFURIATING. You will be happy to know that I have remedied this situation finally, though, and will be sending amazing footage your way promptly.

As a good-faith gesture, here is a video (sorry it's so huge - I couldn't figure out how to make it smaller) of Collin coloring in the occupational therapy session he has right before hippotherapy. He is kind of into coloring right now. Just a tad.

Coloring from Annie Kratzsch on Vimeo.

Monday, October 8, 2012

Doozy

Well, folks. Collin prefers to get his sickness over with in the September-October range and this year he was right on time. Let's hope this is really it for several months at least, because it was a doozy.

I'll spare you the blow-by-blow, but it was a two-week ordeal involving recurring high fevers, tons of coughing and retching and choking, constant oxygen saturation monitoring and some oxygen treatment, multiple breathing treatments, an antibiotic, and lots and lots of worry on my part. He had just had a small cold back in August that didn't really faze either one of us, but this virus and its accompanying complications sent us into survival mode. Looking back, I think this is why:

1. Kyle and I both got it. So we all had it at the same time. We didn't get it as bad as Collin (until we thought everything was over and mine immediately turned into a raging secondary infection in my sinuses and ears and swelled my tonsils together), but we got it bad enough to make the sleep deprivation seem like a bigger deal. And to me, things just feel more dire when I'm sick.

2. Collin wasn't himself. This is actually a two-part reason. First, Collin has no way of telling us what is going on, so it's totally up to us to pay close enough attention and read his signs accurately. That's a lot of pressure and inevitably involves some trial and error, which doesn't feel good when you get it wrong. So, secondly, when he starts to act unlike himself or give unfamiliar cues, we have to try to determine whether it is just 'normal' effects of the illness, or more serious side effects that Collin is prone to because of his medical and neurological history. All of this adds up to lots of staring and thinking.

3. The longer/more sever the sickness, the greater the threat of seizures. No need to expound on this one.

4. Sickness means isolation for us. It's much, much harder to even leave the house when Collin is sick. So, unless we invite people over to our germ-infested house, we don't see anyone for a long time. At first, this is actually fine because it takes so much energy and focus to keep on top of things during at the beginning of a sickness, but after 10 or more days, it gets to be hard.

The good news is that we're all on the mend and back on track. I'm working on the camera situation, so I hope to have some pictures or video soon. In the meanwhile, I'll be updating soon on some recent doctors appointments and therapy developments.

Thursday, September 20, 2012

On a Roll

This post is alternately titled A Numbered List of Collin's Recent Accomplishments.

Its alternate alternate title is MOOM With a Vengeance

And it goes a little something like this:

1. We had our follow-up with Collin's orthopedist last Friday. I was more than a little nervous, not really because of the possibility of surgery, but more because of all of the work that would go into getting second (and third) opinions if the doctor recommended surgery. All the worry was for nought, though, because the x-ray showed that Collin's hips are improving! The socket is developing nicely and the angle of the femur is slightly better. He will continue wearing his brace at night, standing as much as possible, getting chiropractic treatment and kinesiotape therapy and we don't have to go back for 6 months. Victory!

2. At hippoterapy Tuesday, Collin rode Captain for a few seconds all by himself. As in, no one was holding him up there. It was only a few seconds, but it was an amazing few seconds.

3. Out of nowhere at speech/feeding therapy Wednesday morning, Collin started taking sips from a straw. We only tried the straw on a whim, based on some recent improvements in lip closure, so we were all shocked when Collin accepted the straw, sucked a few times, and swallowed! The cup/straw is designed to prevent a child from getting too much at one time, which keep Collin from feeling overwhelmed and allows him to feel in control, which is where a lot of his distaste for eating (har har) seems to come from. The weighted end of the straw insures that he never ends up sucking air. Hooray for thoughtful design and hooray for total surprises. I had been resigning myself to the frustration of Collin's lack of progress. That will teach me.

4. We went to the playground to celebrate Collin's great drinking achievements and while we were there, he swang in a bucket swing all by himself with no HuggaBebe for support. He was simultaneously nervous and thrilled. Coming off his great therapy session, I was almost in tears watching him use a 'normal' piece of playground equipment. Next, we went to the slides, where I held him in a seated position at the top, counted to three, and then helped him slide down on his back. After two rounds of this, I was surprised when, as I got to 'three', he clenched his booty and pushed with his feet to go down on his own! I still had to assist to keep him from knocking his head, but it was pretty fantastic.

And no, I don't have pictures of any of this, so DON'T ASK, because my camera BROKE for NO DISCERNIBLE REASON in the middle of a weekend full of LOTS OF IMPORTANT PHOTO OPS. NOT THAT I'M UPSET.

Monday, September 10, 2012

Vacay

We just got back from our annual week at the beach. Collin really enjoyed the breezier days on the beach and loved sitting in the waves more than ever before. And of course he got in lots of good swimming time. It was a wonderful break from the norm, but we're all happy to be home again.








Tuesday, August 28, 2012

'Tis The Season

Break out the festive drinks and flashy sweaters! It's Collin's six-month-checkup season!

Our first appointment was with his geneticist/neurodevelopmental pediatrician. It was a typical appointment in its length (over 1 1/2 hours - all of actual face-to-face time with the doctor) and depth. The doctor asked lots of questions, took lots of notes, and played with Collin in his super loud Billy Crystal voice that always scares Collin to death. His overall impression of Collin's progress was very favorable. He noticed a big difference in his core strength and his overall social interaction. In our conversation about Collin's apnea (central, which means it originates in the brain), circulation issues (his feet often change color and are completely different temperatures), and fast heart rate, he got into his head that we should consider having an MRI done since all of these functions are autonomic and could indicate an abnormality in the brain stem, which controls many of the body's automatic activities. Also, we haven't had one since Collin's seizures stopped and he thought it would be interesting to see how his myelination is progressing. He also recommended a whole slew of blood tests, some genetic and some just metabolic to monitor the effect of the ketogenic diet on his body. He's actually a fairly test-happy doctor, simply because he feels that more information is better. I can see where that would be a temptation, particularly in a case like Collin's, where there are so many unknowns. But in my mind the hassle, fear, and uncertainty of subjecting your (incredibly complicated) child to sedation requires a better reason than "it would be interesting to see."

Our visit to the pediatrician was also encouraging and the doctor was supportive of my hesitation to rush into an MRI. He talked through the situation with me and explained that nothing he saw on an MRI -- whether good or bad -- would change his treatment or recommendations for Collin. He's a kid with enough on his plate, so anything extra should promise some significant benefits. Always great at going to bat for us, he offered to speak with Collin's geneticist and neurologist if they felt strongly about the MRI. He also felt (as did the geneticist) that Collin's hips feel great and said that if the orthopedist recommends surgery after our next visit in a couple of weeks, "we'll get a second opinion if we need to." It's this team mentality that always makes this appointment a welcome one. As far as doctor's appointments go.

The next appointments will come after our family vacation (which we really need - I'm sure I always say that, but I really mean it this year!).

A quick note on Collin's apnea: after my last post about bipap in which we were preparing to pursue an appointment with a pulmonologist, Collin just stopped desatting. There were even a couple of nights when no alarms went off at all. Needless to say, I felt like a new woman after some uninterrupted sleep, and started to regard the situation with some hope. It's been a few weeks now and the pattern seems to be one of overall improvement. He even slept with only a cannula for oxygen one night and didn't have a single hypoxic (low oxygen) episode, though he used to have multiple dips into the 70s and even 60s nightly. So, we're very thankful and hopeful that maybe bipap really is a long-term solution for our champ.

Tuesday, August 21, 2012

For the Fans

It seems that there has been a dearth of pictures of Collin on here recently, so here are some treats from a photo session we had back in June with the lovely and incredibly talented Mickie Winters. This shoot was a multiple-holiday gift for Collin's Nana and Grandad, but it ended up feeling like a gift for everyone.








Thursday, August 16, 2012

Some Silliness

I have a writing accountability partner. I check in with her every day to report that I've fulfilled my commitment to write a minimum of 45 minutes (and she does the same with me). Some days I journal, some days I blog, some days I churn out a little impromptu fiction, and some days I end up doing more thinking than writing. Recently my partner proposed a simple prompt to help out on those days when it's hard to break through the inertia: adventure.

Yesterday, Collin and I found ourselves with 45 minutes before Daddy was scheduled to come home. I was tired. But I hadn't written yet. So, we threw some pillows on the floor and settled in to write an adventure story together. It's a little silly and very rough, but we thought you might enjoy a bit of diversion in your day!


The Adventures of Collin

Once upon a time there was a little boy named Collin. He was 3. But he was no ordinary 3 year old. He was a cowboy-astronaut-deep-sea-diver-evangelist 3 year-old. It’s hard to believe that someone so young could be so good at so many things, but I’m here to tell you that it is true.

Collin lived with his mom and dad (of course, he was only 3!) in a brick house with a big porch that wrapped all the way from the front to the back and to the front again. When he wasn’t away on an adventure, Collin’s favorite thing to do was to sit on that porch with his parents and listen to the summer bugs while he waited for hummingbirds to stop by the red flowers his mom had planted all around the house. His yard was so huge that it was really more than a yard. It had a big garden where his family grew their food. It had chickens that ran around happily pecking for bugs and laying beautiful brown eggs. It had fruit trees and bushes that grew sweet treats for all to share. And it had Collin’s trusty dog, Cheeky. Cheeky got his name because he wasn’t very good at understanding social boundaries and was a little on the pushy and mouthy side. But he had a good heart and he and Collin were a great pair.

On this particular afternoon, Collin and Cheeky were sitting quietly, enjoying a surprising breeze in the shade of the giant porch. All of a sudden, his neighbors ran into the yard, yelling in alarm. His neighbors were also his Uncle Kevin and Aunt Tessa. “Help!” they cried! “Someone has taken Ila!”

Ila was Collin’s cousin and had been his best friend ever since she was born. No one could mess with Ila and get away with it.

Collin called for his parents and when they heard what was going on, they knew Collin would be heading out to track down these bad guys, so they grabbed his cowboy hat and packed him some dinner and down the porch ramp Collin rolled.

Rolled?! That’s right, this cowboy-astronaut-deep-sea-diving-evangelist was also a wheelchair-driving superhero.

It wasn’t long before Collin spotted the dust cloud far ahead that meant that he was gaining on the kidnappers. So he kicked it into high gear and soon rode them down.

The two bad guys each held one of Ila's hands tightly. They looked grumpy and like they needed a bath. When they turned around and saw Collin, they sneered. “Oh look, a cowboy in a wheelchair. How scary!” And then they laughed an ugly laugh that wasn’t funny at all.

Collin narrowed his eyes and waited.

“What, do you want your little friend back?!” the meanest bad guy asked. “Well, you can just come and get her!”

So Collin did. He rode straight toward Ila and the two bad guys. It looked like he wasn’t going to stop. One guy jumped one way and the other guy jumped the other way and Ila, in the middle, didn’t even flinch. She jumped right up on Collin’s lap.

“Oh no you don’t!” yelled the bad guys. They scrambled up off the ground and chased Collin. Soon, they had hold of the back of his wheelchair and Collin and Ila were stuck.

“Now you can just come with us too, Mr. Tough Guy,” said Bad Guy 1. And he pushed Collin’s wheelchair around the corner and right into the open door of a waiting rocket ship!

“3-2-1, liftoff!” yelled Bad Guy 2 and the rocket ship lifted into the air. But Collin wasn’t worried. He could tell these guys were amateurs. And he was an astronaut.

When they cleared the Earth’s atmosphere, the bad guys lost their nerve. They looked around and saw all of the blackness and were terrified. But Collin couldn’t see the blackness, so it wasn’t scary to him.

Couldn’t see it?! That’s right, this cowboy-astronaut-deep-sea-diving-evangelist couldn't see very well - he could only see beautiful, happy things like flashing lights and beautiful colors. Pretty cool trait, huh?

So when the bad guys fell trembling in fear on the ground, Collin just rolled up to the control deck and turned the rocket ship back around toward Earth.

Just as they started to reenter the atmosphere, the rocket ship started to sputter. “Oh no! I forgot to fill the gas tank!” wailed Bad Guy 1. Collin was in a tight spot. He made some bubbles to calm himself down, gave his ear a good rub, and prepared to crash land the rocket ship into the ocean.

He was able to hit the surface of the water at just the right angle that the rocket ship didn’t explode into a million pieces. But it did bust some windows and soon it began to sink.

Collin wasn’t worried, though. This cowboy-astronaut-deep-sea-diving-evangelist could hold his breath longer than anyone else he knew. He practiced all the time at home and made his parents very nervous. So before the rocket ship started sinking too fast, Collin kicked through the water out of his wheelchair and Ila (always brave and right on the same page as Collin) held onto him.

He kicked and kicked and kicked and KICKED until he burst through the surface of the ocean and took a giant, wonderful breath of air. That’s when he saw that the bad guys had been holding on to Ila’s feet. No wonder it had been so hard to kick to safety! Collin rolled his eyes, but inside, he was glad that they had survived, because everyone is valuable in the eyes of God.

Collin showed Ila and the bad guys how to relax and float on their back so they could conserve energy. He knew his parents would be looking for them and it wouldn’t be long until they were rescued.

He was right, of course. Soon, a helicopter buzzed overhead and his daddy dropped down on a rope and carried them each up to safety. His mama flew them all home and landed safely in their big, big yard.

Tessa and Kevin were waiting and they were so happy and relieved. Everyone - including the bad guys, who were hungry too - washed their hands and gathered around the table for a delicious dinner. 

During prayer, the bad guys started to cry. Sitting there at that generous table, they felt terrible about their bad choices, but they didn’t know how to change. Collin’s family told them about God and his son Jesus, who could help them, but the men didn’t believe that Jesus could love them after the terrible things they had done. Collin wanted to explain it to them even though he couldn't speak.

Couldn't speak?! That's right. This cowboy-astronaut-deep-sea-diving-evangelist couldn't even talk! At least not with words. But he reached out his hands to the bad guys and touched their arms and suddenly they understood the power of forgiveness. They admitted that they were wrong, asked Jesus for help, and started new lives with him. They always remembered that dinner with Collin’s family and they regularly sent letters for the rest of their lives.

After that, life went pretty much back to normal. Collin played with Cheeky and Ila (and eventually a new cousin, Kate!) and only very occasionally did he run into adventures that called on all of his special skills at once.

Saturday, August 11, 2012

Childhood: Where Does Therapy Fit?

As summer winds down, we're nearing the end of a blissful hiatus from most of Collin's therapies. It wasn't my choice, I'm sad to say. Therapist vacations and therapy center breaks just aligned favorably and we found ourselves in a 3-week therapy lull. Interestingly (and in large part due to how well Collin does during less busy times), it seems that it is always during these breaks that I end up thinking through things differently. And though the past couple of weeks have been a blur of BiPap troubleshooting, I have still found myself stepping back from the daily minutia and daydreaming on Collin's behalf.

I say 'daydreaming' because this is not the summer I would have chosen for a 3 year-old. With a minimum of one therapy session a day, not including travel time, doctor's appointments, the hours of therapy we do at home, and the 101 trips to the potty Collin takes daily, there wasn't room for much else. He's been swimming at our amazing neighborhood pool no more than a handful of times since it opened. I took him to the zoo yesterday morning for the first time all summer. We had a wonderful time together and Collin interacted more than during any other zoo trip ever. I thought Why don't I do this more often? And I answered myself, Because there is no time for it.

I want Collin to be as independent as possible. I want him to learn to move himself, to eat, to communicate - in whatever way each of those things can come to pass. I want to equip him to have the fullest, richest future possible. That's why we search out the best therapies and commit to them.

But what about the therapeutic benefit of a free, secure childhood? One that is swathed in love and buoyed by creative enthusiasm?

Soon after Collin was diagnosed with Infantile Spasms and my heart and mind were trying to adapt to our new reality, my mom gave me Cushla and Her Books, which she had read in grad school. It's a study of a couple whose daughter (Cushla) was born with significant medical and developmental disabilities and the path they took to giving her the best life possible. (I actually wrote to Cushla herself right from Collin's hospital room and later ended up getting a lovely email from her and her dad. I was star struck.) What I remember most from the book, even more than the huge impact reading had on Cushla's development, was something that happened toward the end. The family decided to leave their home and move somewhere more rural. I remember it being near a body of water. And Cushla flourished. She just took off. I interpreted this to mean that the free, easy lifestyle and the increased time spent outdoors provided an ideal environment for Cushla's development.  Her best therapy was spending more quality time simply being a kid.

It makes me think of my own childhood, which I think I can safely call ideal: raised on a farm, surrounded by loving family, very little structure outside of chores and basic rules for safety and respect. I still remember almost viscerally the exhilaration of having a whole morning free to run and swing and 'play pretend' with my sister. Sometimes we just hauled our stuffed animals out under the tree or read books in bed.

And even though Collin is a very different 3 year old than I was, I don't think it is unreasonable for me to want the same childhood for him. Just because he can't run and jump doesn't mean summers shouldn't be golden for him. Just because he can't see well doesn't mean he shouldn't get swept up in the world of books. Just because he needs help with every aspect of his life doesn't mean he shouldn't enjoy the pleasure of simply being.

We've made steps in that direction. I've taken his home therapy routine and wrestled it into something resembling a preschool schedule, in which his eye and hand therapies lead up to an art project or his listening therapies lead up to music time. But even though it brings some purpose and beauty to a long list of tasks, it's still more and more structure. More and more tasks.

I don't have any easy answers. The hard truth is that therapy must be a part of Collin's life, and likely always will be. I should clarify that I am incredibly thankful for all of the therapies we've found, that I love his therapists and the benefits he gets from his time with them. And trust me, I'm very okay with asking him to work hard myself. But I'm reaching the point where I want to think more seriously about the assumption that more therapy is better, no matter how extensive the needs. And I want to be more intentional about creating time in Collin's life for freedom and fun, more space for the plain old magical breathing and growing of childhood.

Thursday, August 9, 2012

Ups and Downs

Our lucky streak with BiPap seems to have come to an end. For several nights in a row, Collin has had multiple spells throughout the night during which his blood oxygen plummets enough to set off his pulse ox alarm. Basically, the BiPap is not forcing him to breathe regularly enough to keep his oxygen levels stable. This only happens in the deepest of sleep and it seems to be the sound of the alarm or a touch from one of us that gets him breathing again.

Not only do we want better than this for Collin, but we need a more sustainable solution for ourselves. Being jolted from your sleep sometimes dozens of times a night by an alarm that indicates that your child isn't breathing is not good for the health - mental or physical. So, we've decided to set up a consultation with Collin's pulmonologist (who orders his sleep studies, oxygen, bipap, etc.) to discuss options. We would prefer to avoid another sleep study, since Collin rarely sleeps well during them and it is only in the deepest of sleep that we run into issues. Also, as my engineer husband points out, a sleep study is only one data point and doesn't yield any statistical significance that is helpful for the long term. So, we plan on asking for a safe range of BiPap settings we can experiment with at home, a big request considering they don't even allow parents access to setting-changing menus in the home. We'll see how that goes.

In brighter news, Collin is now riding 25 minutes with no break at hippotherapy! He has also started taking trips around the arena without his support pillow. The first two times, he barely made it around once, but this week he made it three times! All of this is paying off with stronger trunk muscles and much better use of his arms in propping himself up. This picture is of Collin and his current riding buddy, Tucker. Captain is on vacation for a while and Tucker is a great fit for Collin while he's away.



Tuesday, August 7, 2012

Leaving Collin

I knew that's what it would feel like. Not 'going away as a couple'. Not 'celebrating our 10th anniversary'. But 'leaving Collin'.

We had not both been away from him overnight since he was in the NICU. Only a very small handful of people know how to do even the basics for Collin - feed him, vent his tummy, give him medicine/supplements - not to mention his bedtime routine, which involves a shot, two blood samples, interpretation of those samples in order to maintain the right level of ketosis, cleaning his g-tube stoma, and setting him up on either oxygen or bipap. That doesn't even include all of the normal bedtime stuff that is more complicated when you have a kid who can't talk, sit up, or help in any way. On the few nights when we went out on dates during his bedtime, we did most of his routine ourselves earlier in the afternoon. Spending a whole night away always seemed like an impossibility.

But I grew up watching my parents go on little overnights now and then and I knew how important it was for them. Other couples my own age made the time to have these retreats and, even though I have the tendency to disqualify myself from things other parents do because of our situation, the more I thought about it, the more important it felt.

If I'm honest, though, there was a part of us that didn't want to spend a night away. There is a false security that comes with thinking that as long as we're with Collin, he will be okay. And a full night feels different than an afternoon or evening date. Much bigger. Like making a climb without a safety rope.

Luckily, I have some truth-speaking friends who gently suggested that maybe I was making excuses and that maybe, just maybe, it would be good for everyone involved - including Collin. Then my sister volunteered to learn the ropes and stay at our house while we were gone. We set up a two-week training schedule. I made a hotel reservation. I printed off pages of notes.

The result? We had a beautiful time. Yes, our hotel was only 10 minutes away, but that allowed us to relax and enjoy ourselves more and we still felt like we were in a different world. We went to a movie. We dressed up and went to dinner and took a walk and held hands. We watched a lot of Olympics. We slept in till 8:30. We reminisced. We only called to talk to Collin twice.

My sister handled all of the trickiness beautifully. Collin had lots of quality time with his aunt, uncle, and cousin. He painted us a picture and played with instruments and seemed excited when we came home. I know we were excited. When we finished our brunch and realized that we would be home in time to put Collin down for his nap, it was a bit of a mad dash. But we were refreshed and recentered, rushing home in joyful anticipation and not at all in anxiety or guilt over 'leaving' Collin.

Thursday, August 2, 2012

Another Gold Medal Event for Collin

We've been training for this for a year and a half now.

When Collin was 18 months old, we learned that he has severe central apnea (his brain stops reliably telling his body to breathe while he's asleep) that was causing his blood oxygen levels to dip far below safe levels for much of the night. He was never getting good sleep because eventually his body would sense the emergency situation and wake up.

At first, the experts didn't think bipap was even an option for Collin. They thought his low tone and Nissen fundoplication would cause too many complications. So, they put him on a low flow of oxygen, which seemed to take care of the blood oxygenation issue and some of the failure-to-breathe issue.

But once we got a pulse oximeter and looked at his oxygenation trends in his home environment, we realized that he was still having desats (drops in blood O2) well below the safe range multiple times a night. The difference was likely due to the fact that his quality of sleep was so poor at the hospital -- getting into deeper sleep at home made the disconnect between his brain and his breathing even wider.

So, we saw some different experts. Collin was older and stronger and these doctors seemed to think that bipap would be preferable to oxygen treatment in that it would actually fix the lack of breathing rather than just covering up its symptoms with extra oxygen flow. They did another sleep study (the 4th one) and prescribed appropriate settings for his bipap machine.

We tried. He couldn't tolerate it. We tried again. He still could barely stand it while awake, much less fall asleep. We found a special pediatric mask. We instituted a training schedule. He made slow but steady improvement. We started with naps and then moved to nights. He continued to desat even with the bipap pressure. We lost a lot of sleep.

And then something kicked in. It's like how some athletes train and train and are really incredible, but other athletes have that special something that always kicks in at the right time and gives them an extra edge. Collin's extra somethings are adaptability and resilience. Just when I was resigning myself to a life of poor sleep, Collin started sleeping through the night. His desats reduced to 0 - 3 a night. His oxygen saturation increased to the same levels he typically shows while on oxygen treatment. He woke up happy in the mornings. He smiles when we put on his mask and turn on the machine and falls asleep within minutes.

So, Collin goes for the gold and gets it again. Not sure why I continue to be surprised.

Thursday, July 26, 2012

All That Matters

I've heard it dozens of times and said it myself at least that many:

"I don't care whether it's a boy or girl. All that matters is that it's healthy."

It is an answer that really has nothing to do with pink or blue. It's something we say in an effort to show that we will love our child unconditionally.

Since Collin came into my life, though, these words have taken on new meaning to me. For a while, they hurt my feelings (My son isn't healthy. Does he not matter?). Then, they made me angry (Would you say 'All that matters is that it's smart?!). But finally, I think I see this statement for what it is: a way to block ourselves from thinking about the worst possibilities. It is a hopeful assumption that all will be well. Which, in a way, is perfectly natural. Who doesn't wish for the best for themselves and their child? But I've come to think that in closing our eyes to potential complications or hardships, we actually do ourselves a disservice in preparing for parenthood.

Because what if something is wrong?  What if, in counting the proverbial 10 perfect fingers and toes, something doesn't add up? What if an examination of your precious one brings worried looks to the doctor's face? What if the uttering of a diagnosis causes your imagined experience of motherhood or fatherhood to fall away and leaves you stranded in a world no parent would choose? That would be terrifying, wouldn't it?

Yes. It would.

But, listen.

To you, expecting parent, I say: Don't be afraid to be me.

I -- my life, my son -- am the thing you are hoping won't happen. Many of the 'what if's came true for me. You think you wouldn't be able to bear the impossible decisions, the heartbreak, the crushing uncertainty. But you would. You would do whatever you had to do.

And the thing is that my life is good. Really good. Not make-the-most-of-what-we-ended-up-with good. More like so-much-better-than-I-could-have-thought-to-ask-for good. It is rich and full of beauty because of Collin. Your life will hold love and happiness, too, regardless of the physical or developmental characteristics that come along with your precious little one.

Yes, we've endured horrors; but I can't help but think that they wouldn't have been quite so horrific if I hadn't denied all outcomes other than health and perfection before Collin came. Of course, there is no sense in dwelling on everything that might go wrong. That will drive you crazy and steal your joy. But ignoring those possibilities will do the very same thing by creating a false security that hinges on a completely uncontrollable factor.

So, the next time someone asks you about your preferences regarding your child, take heart. Take it as an opportunity to step out of the whirlwind of showers and registries and nursery planning and remind yourself of the magnitude of what's happening. See your coming parenthood in all of its scary and wonderful possibility. Remember that all that matters about this child is that it's yours. And answer with confidence that you will love this little one, no matter what.

Monday, July 23, 2012

Cuddles

I went through our pictures and videos from the past few years recently in an effort to make some room on my poor old computer (it's not as spry as it used to be and apparently can't handle thousands of pictures of Collin). I hadn't seen many of the early videos in quite a while and one thing I was struck by was how much physical affection I was always pouring on Collin. He was so irritable and uncomfortable from his seizure meds and the only thing I felt like I could do that he understood or that made any difference at all was to hold him and touch him all the time.

Maybe because he has become such a big boy or maybe because he is generally so content, I haven't been cuddling Collin as much recently. Late last week, he went through a period of sleep trouble. He seemed agitated and unable to calm down at bedtime. It hit me one night as I watched him wiggling and gnawing his paci in the monitor that other three year olds can call out for their mom when they feel scared or just can't sleep. Other kids go through clingy stages. And just because Collin can't physically cling doesn't mean that he doesn't have the feeling of clinginess. So I disconnected all of his wires and tubes and took him out of his hip brace and just held him and rocked and sang well past bedtime. When I put him back down, he was a different kid and fell asleep in about 3 minutes.

I've learned my lesson.


Wednesday, July 18, 2012

How to Interact With Collin's Parents

It occurred to me after the post on how to interact with Collin that it can also be intimidating for some people to interact with parents of a child with special needs. Many of the go-to topics of conversation just don't seem to apply to us and it feels so easy to accidentally say something offensive. It's unfamiliar territory for many people and consequently difficult to know how to move forward. That's why some people avoid anything beyond a 'Hey, how are you?' while others ask for what amounts to a complete medical and developmental history along with our projections for his future.  So, what do you say? What can you ask?

I don't claim to speak for all parents of kids with special needs, but here is a general list of practical tips that apply to lots of situations. Don't take it as a list of rules, but rather as guidelines to simplify things and help them seem less scary.

1. Go ahead and ask. 
Collin is probably different than any other kid you've ever met, so we don't expect you to know all of his cues or understand why he does what he does.  Of course, it is difficult to have to answer questions about things that would be self evident with most other kids, but that's no one's fault and we would rather you know than not. In a way, the more you understand Collin, the more you understand us.

Which questions should you ask? We talked about it a long time ago, and it still holds mostly true: be specific and focus more on 'what' questions. 'How is Collin?' is a question that requires us to either go the vague and superficial route ('He's good!') or the detailed and harrowing route ('How much time do you have?'). 'What did Collin do today?' 'What is that thing sticking out of Collin's belly?' and 'What is Collin saying?' are all totally acceptable and manageable. Also steer clear of questions about the future. 'Will Collin ever learn to eat by mouth?' is a question no one can answer. And does it matter, anyway?

2. Talk about your own kids...but not too much. 
If you have some, we want to know your kids too! There is no reason to be uncomfortable talking to us about your typically developing child. We want to hear about their personality and what they're in to. That being said, we might not want to hear about how they are hitting all their milestones way before all of their peers and are in the 99th percentile for everything measurable. Honestly, though, most people other than the grandparents might not want to hear that.

3. Talk about things other than kids. 
We read books and watch movies. We're interested in farming and good food. We are knowledgeable about things other than therapies and medications and durable medical equipment and it feels great to have grown up conversations that have nothing to do with parenting or sleep schedules or even Collin.

4. Be okay with differences and difficulty.
There are a lot of things about our lives that are the same as yours, but there are a lot of things that are very different, and that's okay. The more okay you are with it, the less uncomfortable it is. Likewise, there will be times when things are hard for us in a way you can't really understand. That's okay, too. Don't feel sorry for us and don't feel like you have to say something to make it better. Just recognize the difficulty and be there with us and for us.

5. Remember that what matters most to us is your heart.
We're not looking for perfection here. We don't want anyone walking on eggshells around us and we've both said our fair share of stupid things to other people. What really stands out to us is your interest, your concern, your willingness to step out into something unfamiliar because you sense it might be worth it.

Collin's best bud at the aquatherapy pool started off their relationship with a somewhat rude inquiry and even though she still asks awkward questions about what Collin will and won't be able to do in the future, she also cuts coupons for him and bought him a plush orange fish that reminded her of him last summer. He smiles when she crouches down on the edge of the pool and talks to him. She sits with me while he swims, sometimes making light conversation, sometimes just sitting and enjoying the show.

In a way, conversing with a parent of a kid with special needs is like getting to know someone from a different culture. It involves asking, sharing, and working through awkwardness. It requires reaching out and across and identifying both likenesses and differences. But once you get started, you realize that the gulf is not as wide as it had looked at first; and what results is richness -- something better than before.

Thursday, July 12, 2012

Summer Fun Boot Camp

Collin is hitting it hard this summer with two aquatherapy sessions and one hippotherapy session every week. Not to mention our own trips to the pool and the NACD therapy he does at home every day. It does my heart good to see him worn out at the end of the day from playing so hard, just like any other 3 year-old in summer.

And the result, besides a happy boy? A much stronger core, much straighter standing, much more overall body awareness. He is easier for me to get in and out of the car, up and down off the floor, onto and off of the potty. After analyzing his measurements in his most recent nutritionist appointment, we discovered that he has gained a pound and a half of pure muscle over the last two months (plus his head is still growing, indicating further brain growth!). That's pretty good for a kid who only weighs 29 pounds all together.

Here are a few pictures of his summer adventures so far.

Collin has switched to a different horse named Captain.
Captain has a much smoother gait and he and Collin have
really taken to each other.

Swimming with Daddy. We've graduated from the life vest
to swimmies!

Collin has improved significantly at every riding session.
This week he didn't complain once, pushed himself up with
his arms, and didn't take a single break for 15 minutes -
that's as long as his entire first session! He kept going for
25 minutes total.


Saturday, June 30, 2012

Collin's Favorite Things: Summer Edition

All the cool blogs do product round-ups from time to time, and Collin felt like his should be no exception. So here are Collin's top 5 must-haves for summer:

1. Because he's so sensitive to light, Collin doesn't go anywhere without his Julbo sunglasses. They stay on his head without needing a strap, but they don't squeeze or hurt. They have no right-side-up, which simplifies things for the younger crowd, and they look very, very cool. Thirty-plus dollars seems like a lot to spend on sunglasses for a 3 year-old, but they have been worth every penny (of Nana and Grandad's money - thanks guys!). We've been using the heck out of them for 3 months and they still look like new.

2. Another thing that goes everywhere with us is Collin's iPad. It's great for afternoons that are too hot to be outside and makes his stander time or tummy time more bearable. His favorite app currently is called Baby Rattle - 123. Personally, I think it's pretty freaky. The music is weird and ominous and it makes outer-space noises when it switches screens. Whenever Collin touches the screen, another number appears (sequentially, from 1 to 10) and a very serious, echoey female voice says the number. When he gets to 10, he gets a round of applause. All the while, a picture of a sun bounces slowly around the screen. Bizarre. But Collin loves it. Loves. It.

3. We've got to protect that strawberries-and-cream complexion, but we live close to one of the more awesome pools on the face of the earth and Collin is a water baby, so we use a lot of Kiss My Face SPF 30 Sun Spray Oil.  Nearly every sunscreen we've ever tried has made Collin break out in a nasty-looking rash, but this one is gentle and natural enough that we've had no problems at all. And since it's oil-based, we don't have to worry about it interfering with his ketogenic diet if he absorbs it through his skin (that really does happen).

4.  One of our best buys this year (and maybe ever) was this camp chair that I found in the Walgreens seasonal aisle for $9.99. With Collin's low tone, it is extremely difficult to find good seating options for him, especially options that are easy to transport. He sits wonderfully in this little beauty - it has just enough of a bucket seat and just enough head support to keep him in a good position for a reasonable period of time. And all we have to do is fold it up, stick it in its carrying bag, and throw it over our shoulder.




5. If you ask Collin, no summer is complete without muscle tees. And you can see why. Check out those guns. If you've got it, flaunt it, right?


Friday, June 22, 2012

Talk About a Milestone

Today marks two years since Collin's seizures stopped. He has not taken an anti-seizure drug during that time.

It's something that, given Collin's start in life, seemed unlikely to say the least. But here we are, with a healthy, happy 3 year-old whose seizures are fully controlled by the food he eats, and we can't stop thanking God for it. If it's not a miracle, it's pretty dang close.

In honor of his special day, Collin requests that you do something strictly fun or eat something purely delicious today and enjoy it fully. Our day will consist of swimming, cherries, cuddles, books, friends, and more swimming. And probably lots of smiling.

Friday, June 15, 2012

Ride 'Em Cowboy!

This week was Collin's first time actually riding Fauna at hippotherapy. He is hardly supported at all in the saddle, so he has to work very hard and hold up his own head even though it has the added weight of a (snazzy) helmet on it. This week, he was able to ride for 15 whole minutes with only one break! I was surprised that he made it that long and can't wait to watch him improve!


Collin's First Time Riding Fauna from Annie Kratzsch on Vimeo.

Tuesday, June 12, 2012

Ortho

At our last appointment, Dr. Awesome had recommended that Collin see a pediatric orthopedist since tone as low as his can cause various issues and because we want him to be in as good a position as possible to pursue standing and walking since he seems to have the desire.

Last Friday, we got in with the physician Dr. Awesome referred us to. He was nice enough and asked lots of questions about Collin. He noted that Collin's hamstrings are tight and his joints are hyperflexible, both things one would expect in a child with low tone. Then he took a baseline xray to check his hips. We had had an xray back in 2010 and everything checked out fine, but the doctor felt like this one showed some dysplasia in Collin's right hip. This means that his right femur isn't fitting quite right into his right hip socket. Since it wasn't there in 2010 and seemed to be there on this xray, the doctor felt that this is a developing condition. He wants us to come back in 3 months and that if it gets any worse, we'll need to do surgery right away.

Whoa whoa whoa.

Collin's right leg is the one he does the best job bearing weight on. It's the one he steps with first and the one he kicks with the most. It is totally functional and he shows no signs of pain. That doesn't seem like a situation that would warrant surgery.

I asked what might have caused this and what we could do to help it.

He basically answered nothing and nothing. It's developing just because and the only answer would be surgery (he's an orthopedic surgeon). Being in the stander more has no effect (WHAT?!). His muscles on the outside of his hips could be weak (oh really?!), which would allow the hip to slip outward, but with his low tone, there's probably nothing we could do about that. Says he.

I know not all medical doctors are like this because we have encountered several along the way who are very open minded and critically thinking when it comes to prevention and treatment. But it doesn't take too many appointments like this to make you feel justified in a bit of stereotyping. (Anyone remember Dr. Snarky suggesting a tracheostomy and ventilator because of Collin's sleep apnea?)

He did end up sending us home with a brace for Collin to wear at night that holds his legs in a frog position to direct his femur head into the hip socket. But the doctor didn't seem particularly hopeful that it would really do anything and said that if Collin doesn't tolerate it well to just forget about it. (Luckily, Collin has been sleeping GREAT in it, because I admit that after seeing him in it I cried a little bit over the miserable state of his sleep situation - BiPAP post to follow soon.)

Luckily, we have a wonderful team of therapists I've been able to talk to since then who heartily agree with Kyle and me that there is NO WAY we would consider surgery for possible slight hip dysplasia any time soon and helped us come up with a plan to get him standing more (which many studies show does help to form the hip sockets), strengthen his hip and butt muscles, and stretch some places that could be pulling him out of whack. I also had a super interesting and helpful conversation with Sky Medical Inc. (designers of the TAOS walker), who explained in detail the mechanics behind Collin's hip and had some great, practical suggestions that we can implement everyday.

I don't want to give the impression that I didn't like this doctor. He was a good listener and he seemed to genuinely care about Collin's well being. I just don't agree with his approach. It will be good to have his expertise on Team Collin and we'll definitely consider what he has to say, but I can guarantee we won't be rushing into surgery for this issue.

Tuesday, June 5, 2012

A Wonderful Trip

Last week, we took an incredible trip to the east coast to visit friends and family. We had contemplated it around the same time last year, but then Collin retched for five months and we changed our minds. This year's trip, though, went even better than we had hoped. Collin was truly fantastic almost the entire time (there was one I'm-too-wound-up-to-go-to-sleep night). He stuck with his potty routine, took naps, never shut down like he sometimes does in new or stressful situations, and really just seemed to enjoy himself the whole time.  We had the perfect mix of sight-seeing and relaxing, both in Philadelphia, where we visited Uncle Tim, Aunt Jeanne, and Cousin Elise, and in Maryland, where we stayed with our special friends the Clendenins and also visited with other almost-family friends.

One of my personal favorite experiences from the entire trip was watching the Clendenin girls with Collin. At 16, 14, and 12, they could easily have chosen to do other things with their time, but instead there was usually at least one by his side, and sometimes all three at once. They never acted remotely uncomfortable, asked all of the right questions, and adapted to his needs and preferences beautifully. By the end of the four days, they knew his cues and would come get me when Collin needed to go to the potty. There are few things I love more than watching other people love Collin, and they loved him well.

Here are a few highlights:

One of the coolest things we saw: Longwood Gardens
Collin listening to a fountain at Longwood Gardens
Collin's first slip-n-slide!

The slip-n-slide guys congratulating each other.
Our favorite bakery: Isgro's in South Philly
Collin at Mama's favorite monument.
Taking a break on the porch of the
Lincoln Memorial.
Collin loved the fountains at the WWII Memorial.
Couldn't quite fit the Washington Monument.
One afternoon we had an impromptu
sombrero party.
This is how Collin spent a lot of his time
at the Clendenin house.