Thursday, November 14, 2013

Yeasty Boy

Last week, we got the report back from Collin's blood and urine workup from a couple of weeks ago. The results shocked me.

Not only is Collin severely deficient in numerous vitamins and minerals, but many of them we are already heavily supplementing. In addition, his markers for energy metabolism are extremely low and his markers for malabsorption and dysbiosis (unbalanced microorganisms) are very high. Even the doctor, who is very conservative, admitted that though he had expected things to be "off", he was surprised that they were this off.

The logical conclusion (at least in the short term) is that something is preventing Collin from absorbing the nutrients he is getting through food and supplementation. Two of the dysbiosis levels that were highest were both yeasts, which can wreak havoc in the gut. This imbalance has likely been present almost since birth, since the NICU protocol involves courses of very strong antibiotics. These antibiotics kill the good bacteria along with the bad, leaving the gut vulnerable to harmful yeasts.

So, our course of action is to perform another special test which will identify the specific strains of yeast present in Collin's body. This will allow us to most accurately treat him, getting rid of the yeasts and replacing them with good probiotics. Then we will retest his vitamin and mineral levels in 6 months to see if anything has changed.

I have also forwarded the report to Collin's endocrinologist and geneticist/neurodevelopmental physician. Though we have a logical next step to take, I can't help but look at this report through a bigger-picture lens. With my limited knowledge, I wonder whether the test is showing us a metabolic disorder. Though that path of inquiry was abandoned by most of Collin's doctors long ago because he doesn't present like a typical metabolic patient, it's hard to look at these levels and not wonder. We are still waiting for the completion of his exome sequence, which may also shed some light on the mystery that is Collin.

Tuesday, November 5, 2013

Halloweeny

Our Halloween was so low key that I forgot to write about it. Thanks to all for the not-so-subtle reminders.

Collin attended his first trunk-or-treat this year. He passed on the candy but got to see a cool fire truck.

Lumberjack Collin

Apparently, lumberjack is no longer part of the shared cultural experience, because our most common guesses were hipster and axe murderer. As if. The closest was "tree cutting man." Sigh.

See if you can see Collin's 5 o'clock shadow.

It was fun for a short while, but ultimately the commotion was a bit much for him, so we grabbed the cousins and some popcorn and went to the park to feed the ducks and geese, which he much preferred.

Halloween night came with very appropriate dreary weather, so he stayed home in his skeleton shirt and Halloween tattoos and watched The Legend of Sleepy Hollow cartoon for the fifteenth time (there is no limit). 

Checking out his spider/web craft accompanied by his
new favorite toy (thanks Grandpa!) and his happy pumpkin
(thanks sweet neighbor!)
Now bring on Thanksgiving!!

Tuesday, October 22, 2013

Getting Away

I may have mentioned it before, but we're not good at taking breaks around here. We go and go until we either break down or derail. Collin tries to exert a positive influence, but we're hard cases.

But this weekend, we went away for a long weekend. No devices. No therapies. No work. Just mountains and a cabin and each other.

It was empowering, restful, fun, and rejuvenating. The biggest lesson learned? We need to take at least four days next time.
















Tuesday, October 15, 2013

Bring On Fall!

We're autumn people around here. We like layers and soup. We don't even mind some dreary days. So, since August and October swapped a couple of weeks this year, we're chomping at the bit to get going on our fall festivities. This weekend was our kick-off! So please pardon all of my exclamation points!

Friday, we visited Blackacre Farms with the cousins. We utilized the communal swing, explored the barn, and took a walk. I'm sad I didn't get a picture of Collin feeding the horse. They really liked each other. Or at least the horse liked Collin's carrots.


Saturday was pumpkin picking day. Collin got to feed some sheep, take a hayride, taste an apple cider donut, pick a pumpkin, and ride the John Deere barrel train!






We ended the weekend up on the farm, where we had Collin's quarterly NACD evaluation and got in some practice for our upcoming family vacay in the mountains!


Now if we could just get some cool temps and changing leaves, we'd really be in business.

Thursday, October 10, 2013

State of the Collin

Sometimes I can barely keep up with this kid and his schedule, much less write about it all, so I've fallen off the blogging wagon again. Here's an enumerated list to catch me up.

1. New Doctors
A while back, I thought to myself, "You know what we need, Self? More doctors!" So I got Collin in with a well-known pediatrician in the area who specializes in holistic treatment. I was very impressed with him (He read Collin's medical records. Like, all of them.) and he is ordering some very detailed blood and urine work to see if Collin has any deficiencies and how his body is using what he's getting in the way of supplements. After that, we'll decide whether to look for toxicity issues. We're not looking for a panacea here, we're just hoping to give Collin the opportunity for maximum health and development within his capability. And we're also not leaving our old pediatrician (I shudder at the very thought); rather this new doctor is serving in more of a consultant role.

Our new ophthalmologist, on the other hand, is a trade-in. We hadn't been getting much help from our old one for years and got a recommendation for a good one from another highly respected doctor on our team. It was a great move. He was very thorough, open, and a great listener. In fact, he determined that Collin does not technically even have CVI (cortical visual impairment), as Collin's vision is improving and CVI is more of a static condition. Instead, Collin's condition would more accurately be called DVM (delayed visual maturation). On top of that, Collin's far-sightedness has improved dramatically and he has developed a degree of astigmatism, which makes everything blurry. But since he is trying to use his vision so much, the doctor felt that it would be worthwhile to revisit glasses, which brings us to...

2. Collin Got Glasses. Again.
You may remember this brand of awesomeness:


And now brace yourself for the new and improved:


And of COURSE he refused to open his eyes for the camera. Because he's four. But he really is using his vision more consistently since getting these bad boys.

3. Collin is Still a Keto Kid
We got the results from Collin's most recent EEG and Dr. Awesome found that it was unchanged from 18 months ago: no seizures, but still abnormal enough to stay on the ketogenic diet until further notice.

4. Collin is Almost Toothless
It's a good thing Collin's incredible oral feeding progress hasn't moved past purees yet, because he doesn't have much to work with in the way of teeth these days. Last week, I found a super wiggly one and pulled it and sometime between then and the beginning of this week, he lost another one, which I never found despite lots of - ahem - *looking*. He is now down six teeth at four and a half years old. When I explained to him that he was not permitted to lose any more teeth before growing some, he misunderstood me and sprouted a six year molar.

5. Collin is Officially Obsessed With His Tricycle
He never wants to get off. Ever. I tried rigging something to keep his hands on the handlebars, and this is what he thought about my efforts:


There is a very slight incline in the parking lot outside our new apartment. He could easily use it to just coast down to the flat part. But instead he pushes as hard as he can to go as fast as he can. The bar Kyle is using here is to help us steer him from behind (we had a few near misses before we added that thing), but there is no pushing going on here.

Collin's Trike from Annie Kratzsch on Vimeo.

Those are the highlights, anyway. We have pumpkin patches and NACD and new gear and a family vacay to come.

Thursday, October 3, 2013

One Less Thing

For years, nap time has involved putting a nasal cannula on Collin and either turning on his oxygen concentrator or opening an oxygen tank if we were away from home. Because his central apnea was so severe, he needed that small stream of concentrated oxygen to signal to his brain to keep breathing and to keep his blood oxygen levels stable whenever he did stop breathing.

But back when Collin virtually stopped having apneas and desaturations at night, I started wondering whether he still really needed oxygen during his naps.

So, I devised an experiment.

For two days, using his pulse oximeter, we watched and recorded Collin's oxygen levels during his nap while he was using his nasal cannula like normal. This established a baseline. Then on the third day, we just removed the cannula and continued to record his levels, looking for any differences.

After nearly two weeks, we had seen him take both long and short naps and had seen no decrease in blood oxygen levels, so we concluded that Collin is now safe to take naps without oxygen therapy.

Voila! One small thing removed from Collin's daily needs!

We will still keep oxygen around for when Collin has a respiratory virus and as backup for his bipap machine, but at least we won't be lugging an oxygen tank with us every time he might be taking a nap somewhere else. Every little bit helps, especially when it points to a generally healthier and more robust Collin.

Tuesday, September 24, 2013

How I Got Healthy

There were periods of time (as in years) of Collin's early life when I was using nachos and sundaes to make it through The Days. I don't necessarily regret that decision - I needed every tool I could get my hands on and eating tasty food worked, if only temporarily - but I definitely did not enjoy the more long-term effects: slowly increasing weight, exhaustion, achy joints, and more. Collin was barely three and I could hardly carry him up and down the stairs. I finally reached a point when I realized that what I was doing was not working, that the costs were vastly outweighing (pun intended!) the benefits and that something needed to change.

I've always been fairly medium-ish, but by the time I reached this turning point, I (like most women I know) had also tried pretty much everything to lose a little bit of weight. Nothing worked. At least not well or for long. But, with my sister's guidance, I had been making a slow transition to real, unprocessed food and in doing some reading on it, I came across the idea of a Primal diet. It made almost too much sense to me and sounded a little too good to be true, but the enthusiasm in the online community was also infectious, so I started experimenting with it. Within 48 hours of going off of grains, all of my achiness completely disappeared and I stopped needing a nap every day. Soon, I was eager to see what might happen if I committed to a Whole30. I was astounded. That was over a year ago and I haven't looked back.

Things I Did:
- Ate fruits, vegetables, meats, eggs, seeds, and nuts (until I totally overdid it and gave myself a raging nut intolerance)
- Did some strength and speed exercises twice a week for 15 minutes

Things I Did Not Do:
- Count anything, calorie or otherwise
- Control portions
- Go to the gym. In fact, I kind of jumped for joy when I read about the chronic cardio effect and kissed those slogging workouts good-bye

I found amazing recipes for things like chorizo sweet potato skins and shredded chicken with bacon and learned new, more delicious ways to make vegetables. I found snacks like jerky and Larabars. Sure, I sometimes missed some foods, but I was really too busy being almost freaked out by the way my body was just kind of morphing on its own. It was like I was finally giving it what it wanted so it could do its own thing.

My Results:
- Lost 40 pounds
- Dropped 4 clothing sizes
- Improved sleep
- Decreased anxiety
- Increased strength and energy

This was in a matter of months. You know I would not lie to you.

Now look, I'm not about to post before and after shots of myself in a sportsbra or anything, but I am strong and healthy and I feel good in my clothes. If you're a parent of a kid with special needs, I don't have to tell you what a tremendous gift this has been. So many of the little things in this life become big and you end up (very willingly) making sacrifices that adversely affect your own health and well being. What freedom to discover that it doesn't have to play out that way! No change I made required me to take any extra time away from Collin and, in fact, now that I am so much healthier, I have more time and energy to spend with him and advocate for him.

When people ask me (and they do) what I did and I tell them, invariably they immediately tell me all kinds of excuses for why they would never be able to do it; the most common by far is the one or two or seven foods they couldn't live without. You might think the same thing. And to that, with love and a genuine desire for your welfare, I say:

Bull.

Nobody is saying you can never have any one thing again. You better believe I had a (big ol') slice of homemade apple pie on Thanksgiving and real hot chocolate at Christmas and Graeter's ice cream in the summer. But when I have those things, fully enjoying them (even though they are invariably not quite as amazing as I remember or imagine them to be), part of the joy is realizing that there is no amount of bread or dessert or queso that comes even close to matching the awesomeness of being a fit and happy mama for Collin.


Thursday, September 19, 2013

In Case You Missed It

I got the chance to write for Cincinnati Children's about advocacy this week.

It's a two-part series that you can check out here and here.

It was not surprising that I was asked to address this subject by a medical center that makes advocating easier by looking out for patients and their families in so many ways. The first time I called to schedule a slew of second opinions and they connected me with a special scheduler who would coordinate all of the appointments to be on the same visit, I knew we were meant for each other. Only a facility like that would want to further assist parents by empowering them in caring for their child.

Tuesday, September 17, 2013

Unclenching

I've finally reached the point where the staring doesn't really bother me on most days. It's just that Sunday wasn't one of those days.

So when I looked up in church to find a blond six year-old boy staring wide-eyed at Collin in his push chair at the end of our row - eyes unfocused, movements uncoordinated - I clenched.

When the staring gets to me, this is what happens. I mentally and physically tighten, bracing myself against a blow, or maybe shrink wrapping myself around my cherished, amazing boy to protect him from harm or prying.

But then I thought: Wait a second. What exactly are you protecting against here? The little boy wasn't sniggering. He wasn't pointing or mocking. Even if he had been, Collin wouldn't have known. He was smiling and dancing to the music with reckless joy, totally oblivious to this boy's stares. So...

Oh.

It's me. I'm the one who has a problem with the stares, and not because of Collin. Well, at least not wholly because of Collin. True, he is most precious to me and I cringe at the thought of other people looking at him like he's an oddity or a pitiful sight. But more than that, I don't like being the object of stares. I don't like us being different from everyone else so obviously and so relentlessly. When people stare, it makes me feel isolated and more aware of my struggles.

It's not pretty, but it's the truth.

But another truth is that most of the time, I don't even know why people are staring. OK, maybe they're rude or nosy. But maybe they have a family member with special needs and they feel drawn to Collin. Maybe they wonder why he's so happy. Maybe they're just trying to figure him out, with no malicious intentions at all.

I looked back at this boy and realized that that was precisely what was going on. He was trying to figure Collin out. Having never known a kid like him, he was trying to understand what he was seeing. Why would I not want that?

So, I let out the breath I had been holding and unclenched. I tried to relax and gently get myself out of the way so I could watch this boy learn what he could about my son.


Tuesday, September 10, 2013

Collin's First Bike

It's red and shiny and he looks amazing on it. 

By the end of the session, he was giving Ms. Michelle not-so-subtle signals by pushing hard on the pedals to get her to let go so he could go faster. 

And also, I cried.


First Tricycle Ride from Annie Kratzsch on Vimeo.

Tuesday, September 3, 2013

Vacay 2013

What with the upheaval from selling our house and moving and the financial heebie jeebies that come along with trying to build a house, we decided to forego our beloved beach trip this year. We opted, instead, for that terrible term but delightful idea: a staycation.

We canceled all appointments (except for an EEG that was too hard to reschedule) and stopped making lists and flew by the seat of our pants about as much as two Type-A workaholics and a supremely schedule sensitive 4 year-old can manage.

Well, let me tell you, it was just what the doctor ordered. Kyle and I got to go on a few dates, we all went to the pool multiple days, visited the farm, and generally just enjoyed our little selves, whether we were out doing something fun or lazing at home.

The only bad thing about a staycation: when I'm away on vacation, I start to miss home by about the 6th day, which helps me to be ready for the end of vacation; but, because I was already at home this week, there was nothing to slow down my momentum and I really, really wanted to just keep on sailing through VacayLand (which, as you know, is a real place) with my boys.







Tuesday, August 27, 2013

A Need-To-Know Basis

On our way home recently, Kyle and I amused each other by coming up with equivalents to the dreaded and discombobulating questions we sometimes get about Collin when we meet new people: "What's wrong with him?" "What does he have?"

"Hi! I see you wear glasses. What's wrong with your eyes?"

"Hello. Have you ever had that mole checked out?"

"Nice to meet you. Do you have any health conditions you'd like to tell me about?"

"Good morning. You look about 40 pounds overweight. Is that because of a thyroid issue or do you just eat too much?"

We laughed at the preposterousness of our examples, but then I felt sobered by the truth of it. I realized why the "Hi, what does he have?" greetings bother me so much. It's not because of any discomfort over Collin or his challenges - it's a bristling at the presumption that it's okay to immediately call attention to Collin's differences and expect an explanation before making any effort to get to know him. That, because he has an obvious disability (or two or three), that's the first thing he (we) wants to talk about.

I read Tina Fey's Bossypants this year and a part that seared itself into my mind was when she talked about her facial scar and how most of her best friends have never asked about it. Maybe even more interesting was the fact that she never felt obligated to tell the story behind the scar just because someone asked, instead deflecting or making something up. It wasn't that she was ashamed. She simply refused to let people make that scar a defining characteristic just because it was visually obvious.

Of course, Kyle and I want to encourage people to ask questions about Collin so they can best understand and interact with him. But maybe not as soon as we meet. Just like in all relationships, some things come later. It's a privilege and not a right to get to that point.

Now let me clarify: I am not talking about kids here. This will be an entirely different post at some point, but with children, questions like these are good. I hate to see parents who are mortified that their child is asking pointed questions about Collin fumbling through some noncommittal answer to get them to shut up. All that does is make things more confusing for the child, which makes it less likely that they will reach out and befriend Collin. But, in my opinion, it is not rude for a child to ask what is on his or her mind. There is no intro-period with kids. They jump straight to the get-to-know-you phase. So when a young child asks me why Collin isn't opening his eyes or why he doesn't talk or walk, I see that as an opportunity. Yes, it's hard for me to watch the uncertainty on their faces as they peer at Collin and ponder my response, but it has never turned out poorly. Usually, they accept my answer, sometimes ask more questions, and then seal the deal by giving Collin a high five when I ask if they'd like to.

Naturally, all of this has made me wonder which things I feel entitled to know about others. What questions do I use to try to figure someone out before taking the time and effort to actually learn about them through observation and interaction? Can I accept someone without an explanation? When the painfully obvious threatens to take over my perception of someone, can I take a deep breath, smile, and just say, "Hi, I'm Annie. It's nice to meet you."?

Thursday, August 22, 2013

On Waiting Until You're Ready

It wasn't that I thought Collin wouldn't need a wheelchair. Because I knew he would. It was just that we weren't ready.

There are so many things in this life with my precious Collin that don't allow the luxury of waiting.  They force us to get ready or go under. A wheelchair is not one of those things.

But it is a thing that demands attention. It has a heaviness - full of all kinds of meaning, but foreign and frightening to most of us. It's not something you take on lightly. Sure, it would improve his positioning and yes, he would need it eventually, but I knew that if we went to that place too soon, it would bring on grief.

So we pushed him in too-small strollers and hefted him around on our hips and dipped our toes in the water with a push chair while we sat with the idea of what was coming and got okay with it.

When it finally came last week, I can honestly say that I was excited. Twinged with heartache, but still excited. And now when I look at him in it, I see its bulk and its knobs, but mostly I see the handsome face and healthy body and radiant spirit it is holding up to the rest of us and out to the world.

I'm glad we waited.






Tuesday, August 20, 2013

Potty Update

We have assembled a potty-on-the-go kit, which includes a small folding stool, a pack of sanitizing wipes, some emergency pull-ups, and this potty seat. After a lot of research, I picked the weePOD because it is soft but still easy to wipe off, fits all toilet shapes, has suction cups for stability, and is all one piece, which makes it much easier to clean than those potty seats with the rigid plastic piece underneath that functions more to collect pee than to keep the seat on the toilet. Also, the hole is big enough for big kids, but not so big that it feels like they are going to fall through. There is a slight rise in the back that gives a bit of support and the splash guard is small but effective.

And the verdict is... SUCCESS. We started out by trying out our system at a relative's house so it wouldn't be a catastrophe if things went south. No need to worry, though. Collin sat right up with minimal support, did his business, and then stood up on the stool and leaned on me when he was done. I was able to prop my knees on the stool so I didn't have to maintain a full squat or touch the bathroom floor.

Next test: public restrooms.

UPDATE TO THE UPDATE:
Wednesday, Collin successfully used the potty at the PT center, Whole Foods, and the chiropractor's office. Everything went smoothly except for the time that my back pocket got caught on the front of his push chair and we both almost went sprawling on the bathroom floor. Luckily, I recovered and Collin didn't laugh too hard.

Wednesday, August 14, 2013

Cousins

iPad partners

Group floor time

Somebody is adored by the big kids.

I love this one because it looks like Kate has both of them
in a choke hold.

Apologies to future-Ila for the panty shot, but this one
was too good to leave out.

Friday, August 9, 2013

When Your Child Can't Play Independently

"Free play" is a term I've heard more as Collin and the children of my friends have gotten older. It refers to unstructured time in which kids are free to choose their own activities and it plays an important role in development, both of skills and of independence.

But there is no free play - at least in the typical sense - at our house. There have been times in the past when therapists have recommended free play for Collin to allow him time to explore his environment. The thing is that he doesn't really do it. If I set Collin up in a seat completely surrounded by toys and leave him alone for a few minutes, at the end of that time, he will be tumped over with his eyes closed. If I leave him on the floor with toys just out of reach to encourage movement, when I come back he will be curled up on his side or possibly kicking, but never paying attention to the toys. Either he can't register the existence of the toys, he isn't motivated by them, or it is too much for him to interact with them on his own.

I've shared before about the mental and emotional challenge of constantly and constructively engaging with a child who does not or cannot initiate - about how it feels to be simultaneously always alone and never alone.

But, over time, I have come up with a few practical strategies that benefit both of us by allowing us each to do our own thing for brief periods during the day.

1. Do Things Together
I try to save most of my tasks until Kyle gets home or for a day Heather is here, but it's not possible to hold off on everything. For example, I value homemade meals, so Collin comes into the kitchen with me and "helps". I tell him what I'm doing and let him feel ingredients. We sing while I'm chopping or have a little dance break in between steps. That way I can attend to something important to our family without leaving Collin bored and unattended.

2. Value Down Time
I grew up in a family that valued true down time, in which you actually do nothing "constructive" at all. But since Collin came along, I've struggled to remember that sometimes "nothing" is the best thing you can do; my tendency is to keep him constantly stimulated in some way in the hopes of goading his development. So when I get swept up in a series of insurance calls or some other task that keeps me from interacting with Collin as I would like, I try to assure myself that even though Collin might not technically play during that time, it's still beneficial for him to have some time when nothing is expected of him.

3. Keep Looking for Something That Works
Most toys and apps are worthless to us without someone to guide Collin in structured play. But there are some wonderful, well designed options and some simple ideas that Collin can do by himself for a few glorious minutes at a time - we just had to keep trying until we found them.  I subscribe to Smart Apps For Kids (and now Smart Apps for Special Needs) who does a great job of monitoring reduced and free apps and sending out recommendations via email. It was through this site that I found the beautiful Kate and Harry apps that are perfectly designed for Collin's limited motor skills, enabling him to build and drive cars, ships, and planes. Another favorite is Sound Shaker, which provides a wide variety of fun sounds and colors with minimal fine motor skills required. In terms of 3-D activities, Collin enjoys sensory boxes and a bag of mardis-gras beads makes a perfect non-messy version for on-the-go.

4. Use Videos (Without Guilt)
I never wanted to be a parent who used TV to entertain her child. But I had lots of ideas about things before Collin came along. And the fact is that he can attend much better to something on a screen than to 'real life' because the defined edge helps him to limit how much he needs to process. Consequently, videos and visual apps end up being some of the best vision therapy for him. They have also built up his attention span to that of a typical four-year-old, if not longer. Videos even provide great incentive for Collin to swallow during feeding practice and make meal times much more pleasant for everyone. Add in the fact that he can enjoy them fully on his own, and you have more than enough reasons to integrate videos into our daily schedule.

This may not all add up to free play in the traditional sense, but as with most things, we're not shooting for typical - we're going for our own normal.

Collin watches the rain and listens to Scout sing while I
write for a few minutes.

Tuesday, August 6, 2013

Honing the Team

There are only a few weeks of summer left, so I'm sitting down to do some brainstorming about Collin's upcoming school year, as he will not be attending preschool again this year (more on that later). Along with planning unit themes and fun activities, I'll be revisiting his NACD program, his PT priorities, his feeding strategies, and a new addition: a binder full of suggestions from his new occupational therapist.

We have been through a lot of OTs in a few short years; many of them were really wonderful but didn't work out for scheduling or other reasons. Our most recent occupational therapy was hippotherapy, and while I loved having that experience for Collin, it just wasn't a good fit for our family overall.

Our therapy team is small and incredible and that's how we like to keep it. I'd rather do without a particular therapy than push on with a poor fit. So we just took a break from OT until our beloved feeding therapist mentioned an OT in the area she thought might be a good match for Collin.

This woman has 27 years of experience and specializes in several areas, including reflex integration. Reflexes - our bodies' built-in mechanisms for survival and stability during our early months - are typically integrated when we no longer need them, but if a brain insult occurs (like, say, catastrophic seizures or near-coma-inducing-anti-seizure-meds) during that time, it can impede that process. If those reflexes stay present, they can actually interfere with development.

At least, that's what some people think. Other people think reflex integration is bunk. And that's okay. I don't care either way. I know there is little or no evidence backing it up (which really just means not enough studies have been done and has nothing to do with whether it works), but when you have a kid like Collin, who doesn't come even close to fitting any mold, you find yourself less concerned with large bodies of evidence.

There are two things I love about this woman aside from her expertise:

1. By the end of the first meeting, she said, "You know, I really think Collin is understanding a lot more than he is able to show us."

2. She uses an educational model. That means she did an evaluation, then a consultation in which she discussed her thoughts with us and sent us home with a binder full of specific suggestions for Collin, along with rationale. It's very similar to NACD and many of her suggestions were NACD-esque as well, which I liked to see. We will go back in six weeks to see how Collin is doing, tweak the "program" and get some additional training.

I'm feeling good about this move. I love to get a new set of capable, insightful eyes on Collin whenever possible and I love to be empowered to help Collin myself in his most comfortable and learning-conducive environment. Hopefully this is the OT match we've been waiting for.

Sunday, August 4, 2013

Potty Man

We're coming up on two years of Collin being potty trained. It's hard to believe. Not only that it's been that long, but that it happened at all. How does a kid who has no method of communication and virtually no control over his body potty train himself at 2 1/2? I still don't know.

Though we're still in awe over it all, in a way it actually complicated things. Most of the time, he can't/doesn't tell us when he has to go, so there is a kind of constant vigilance on our part to watch his very subtle cues and pay attention to the time in relation to meals and water. And since he obviously can't get to the potty himself, it requires lifting his 35 pound self onto and off of the potty many times a day.

On the go, things get even tougher. We have to maneuver him onto and off of a potty seat either in the van or at someone else's house. Sometimes it isn't pretty. There have been many times - at events where we were away from the van and couldn't easily carry the potty seat - when I've wanted to just 'let' him go in his diaper (we still use pull-ups for the occasional accident). But I can't shake the feeling that it's actually making a kid who has an understanding of the concept go in his pants instead of in the potty, as he would prefer. I just can't bring myself to do it. I would rather skip an event or leave early.

We've explored other options, but were always thwarted by the fact that Collin refused to go on any potty other than his own.

Until this week.

I had an incident with my back this spring during which I realized that this life with Collin is a marathon versus a sprint not only mentally and emotionally, but also physically. I had to refrain from lifting him at all for over a week, which was tricky to orchestrate and involved lots of helpers. At that point, we got serious about trying to think through the daily physical demands of Collin's schedule and promptly ordered a new, more age appropriate potty seat.

So last week, I decided to use our fresh start in the new apartment as a chance to try Collin on his new potty. First, we just tried it in his room like he was used to. He thought about it for about 5 seconds and decided it was okay. The next day, I decided to run with it and moved the potty into the bathroom and then raised it and rolled it over the toilet. This eliminated an entire step of the process (the emptying and cleaning of the potty) and allowed me to sit on a stool instead of all the way down on the floor. It's a beautiful thing.

No picture of Collin on the potty, since he says once was enough and he's much too big for that sort of thing now, anyway. But here is a picture of his potty chair, which will eventually (when we have a fancy shower) also be his shower chair.


The most recent development came this week at PT when I tried Collin on the 'big boy potty', which was just a normal toilet that has an extra seat for little kids that you can fold down inside the bigger one. We used the stool from in front of the sink (it's a pediatric practice) and the whole thing went so smoothly I could hardly believe it. 

He looked at me like, "What?"

So we're assembling a potty-on-the-go pack that includes a folding stool and a good potty seat that will fit most toilets. 

It's tough to explain what a big deal this is for us. It not only saves my back and feels like a huge leap toward normalcy, but it opens new options for us in terms of where we can go and what we can do. That's a lot to be thankful for. 


Tuesday, July 30, 2013

New Digs

Phew, what a month.

As you may or may not know, we are on a quest right now. The Quest for the Right Home. This home must be accessible for Collin, have room outside for chickens and gardens and fruit trees, and be next door to my sister's family. Any one of these criteria is not much of a big deal, but all three together turn a simple house search into a Quest for the Right Home.

We have just entered stage two of this Quest: Apartmentdom. We sold our home in the spring, were allowed by the good graces of our buyers (and friends) to rent back for a while, but eventually needed to move along. Since we hadn't even put an offer on a property yet and since we are finding it more and more likely that we will have to build from scratch, we found an apartment that is a good fit for us and signed a year lease to buy ourselves enough time to get something done.

So the last month has consisted of getting all of our stuff out of the old space and into the new space while maintaining some sort of normalcy for Collin and keeping up with his appointments. We're tired, but thankful things went so smoothly.

We were a little nervous about making this transition with Collin. Though he has gotten to the point where he enjoys going outside and visiting some new places and people, he is very much a home body and always transformed almost instantly when we entered our house. But, though he did have a few rough days the first week, he has adapted with his usual resilience and now lights up when we come here.

I never thought I would be in an apartment again, but I have to say I'm really enjoying it. Being all on one floor is giving us a taste of what we will have in our new home and I sort of love being in a cozy space with my two guys. Also, every window looks out over grass and trees and when something breaks, I just call maintenance. You can't ask for much more than that.

First chaotic day in the new apartment.

Collin gets to sleep in a queen size bed now
that his room doubles as the guest room and
he loves it!

Sunday, June 23, 2013

Kind of a Big Deal

We did not forget the big day yesterday. We were just too busy having summer fun to sit down and post our reminder that:

Collin has been seizure free for THREE YEARS.

I don't have the words to give thanks for a gift of that magnitude, so we showed our thankfulness by living this week fully - swimming, cuddling, visiting with loved ones, taking walks, and picking blueberries, with lots of smiling and laughing mixed in.

Ready for some more fun.

Sunday, June 16, 2013

Father's Day

Another day to give double thanks:

...for the joy of being wife to a father who loves with abandon and self-sacrifice




...and daughter of a father who taught me what to look for.