Saturday, December 31, 2011

Collin's Countdown of Awesomeness: #1

#1: Potty Time! Excellent!

Nothing says "Happy New Year!" like a new pair of undies!!!

Collin's largely self-taught potty training experience makes the #1 slot for 2011's Countdown of Awesomeness for a few reasons:

1. The way it impacts our daily lives. Collin has never made a developmental change that has significantly altered the logistics of our home life. When other kids start rolling or pulling up or crawling, parents have to make big changes in how they operate. We've never had anything like that. His ability to stand and take steps with assistance is thrilling and sometimes even helpful in changing positions, but the introduction of potty has drastically changed our day-to-day routine. I have changed two dirty diapers in the past month. Sometimes I go half of a day without changing a wet diaper. We take the potty everywhere we go. We're actually thinking about starting to make the transition to training pants and/or underwear. It's bewildering and wonderful.

2. The way it has heightened our communication with Collin. Other than reading Collin's smiles, cries, and fussing, we have never been able to establish a way to communicate with him. We could only react to his reactions and fix things after the fact, rather than having a chance to meet his needs before a problem arose. He had no way of telling us what he wanted, or if he did, we didn't understand. Now that potty is part of our daily routine, either he has become more communicative or we have become more in tune with him or both. We feel like there are certain sounds he makes that we can fairly consistently read as meaning that he needs to go to the potty. There is no way to explain what that feels like.

3. What it reveals about Collin. Using the potty is a fairly sophisticated thought process. It requires understanding of multiple complex factors that can be difficult to explain. It requires bodily control (not Collin's strong suit). It requires waiting for something you want. And, for the most part, Collin figured it out on his own. On time, no less (developmentally speaking). Of all of the wake-up calls we've had with regard to what's going on in Collin's head, this has been by far the most pivotal. I speak to him differently now. I interpret him differently. I try things with him I might never have considered otherwise.

I couldn't resist resurrecting this picture from 3 MONTHS AGO when Collin first started the potty journey. He, of course, did everything backward from most other kids and went straight to pooping on the potty. Peeing didn't come until much later. He now pees on the potty all the livelong day, as evidenced here. Listen carefully.

Who could have guessed that listening to a tinkle in a potty would so radically change our outlook for the coming year (and the years beyond that)?!

Knowing Collin, and continuing to know him better through insights like this one, is a singularly beautiful gift; something we never would have thought to ask for. Our life with him, far more than a lesson in suffering or endurance, has been (and I am confident will continue to be) a lesson in grace. Grace upon grace.

Happy New Year.

Friday, December 30, 2011

Collin's Countdown of Awesomeness: #2

#2: Small Steps, Giant Leaps

We've been so fortunate that none of our doctors or therapists have ever tried to tell us that Collin would 'never' do something. I've heard so many horror stories of physicians telling parents that their child will never see, never speak, never walk. But partly because of their own compassion and integrity and partly because of the enigmatic nature of Collin's condition, Collin's medical and therapeutic providers have refrained from issuing restrictions on his future, allowing him to show us what he can do.


I'm a writer and a reader and I know how to pick up on connotation and subtext. No matter what people did or didn't say out loud, it was clear to me that, while they were willing to entertain remote possibilities (and hallelujah for that!), they found it most likely that Collin wouldn't do many of the things other people do.

And, honestly, we had come to the point where we accepted that possibility. We started thinking about what we would need in a house, in a vehicle, in equipment if Collin were to use a wheelchair or need to be transferred from one position to another for the rest of his life. It wasn't resignation and it wasn't settling. It was being okay with Collin exactly how he is - letting go of the desire for anything about him to be different. Which isn't the same as not hoping or working. It's just more of a living in the present, leaving the future happily (and rightfully) obscure. It left us free to enjoy Collin fully - who he is - rather than wringing our hands over what he might or might not do.

The bonus that comes with thinking that way is that you are rarely disappointed and often pleasantly surprised. When you don't expect to see your child's first steps, it is almost unbearably beautiful when you do.

Thursday, December 29, 2011

Collin's Countdown of Awesomeness: #3

#3: Freedom

Seizure freedom, to be precise. And seizure med freedom.

On June 22 of this year, after an incredibly rough month that included his first stomach bug, hospitalization from ketoacidosis, and moving out of his house for 3 weeks due to a serious home renovation project, Collin celebrated one full year of seizure freedom. It was a day we had been fairly sure would never come. His seizures were intractable - they did not respond to medication. Rather than getting relief, he only endured horrendous side effects that we still deal with to this day. Even when we found one miracle drug (Sabril) that his Infantile Spasms responded to, his seizures came back a few weeks later in a new form. So, while we continued to hope against hope for an end to (or even a break from) the exhaustion and heartbreak of seizures, we simultaneously prepared ourselves for the possibility that it would never come.

And then we found the ketogenic diet.

It was a rough start, but we stuck with it and even took the risk of weaning Collin's multiple seizure meds with the support of Dr. Awesome.  We switched to a blenderized, whole-food version. We tweaked the ratio. We added protein supplements. Slowly, the periods of rest between episodes began to increase. On June 21 of 2010, right around the time of his last dose of clonazepam, we witnessed Collin's last seizure to date. It was a doozie. Actually, a big fat cluster of doozies. I cried and cried and had the doctor on the phone trying get some guidance. And then they never came back.

We don't take for granted this precious gift. Many kids never find complete seizure control. And Collin's may come back one day. But we have been given this amazing time of freedom, and so we celebrate.

Wednesday, December 28, 2011

Collin's Countdown of Awesomeness: #4

#4: Taking a Stand

When NACD added a sit-to-stand exercise to Collin's program, I admit that I cringed. One more activity in which I would be doing all of the work did not even remotely appeal to me, especially since I knew we would be doing it multiple times a day. And even though on the one hand it is empowering to have tasks to complete each day for the retraining of Collin's brain, on the other hand, it can be very discouraging to do the same things day in and day out with no sign of change. Collin had never shown the smallest inclination toward bearing weight on his legs. He kept them drawn up like a baby or a bug and touching his feet to the ground only made him squeeze his legs in more tightly.

Imagine my surprise when I almost immediately started getting promising reports from Collin's helpers. Both women who work with Collin in our home during the week felt that he seemed willing to try straightening his legs during the activity. I heard hoots of surprise and encouragement from the other room, but never made it in time to witness just how well he was doing.

So, when I took my turn at assisting him in sit-to-stand, and he stood straight up before I even had a chance to count to three for him, I could barely choke out my praise through the tears. I wasn't prepared for just how tall he looked standing up. How much like a little boy. With his developmental delays and the fact that he still spends much of his time laying down, I struggle with a tendency to still see Collin as a baby. But standing there in front of me, his face shining with the excitement and effort, he looked like a 2 1/2 year old. It was amazing to see.

Almost as amazing as the sudden onset of his standing was how fast he got better at it. Those first few days, we were in awe of the 10 to 20 seconds he could stay upright. Within a week, he would stand as long as our arms were willing to do their part supporting his upper body and he fully expected to have his chance every time he got off the potty and as many times in between as he could get. It was quite a shift in our reality.

What brought on such a change? It could be from the extensive body work we had done through his NACD program. It could be from the aquatherapy that had opened his mind and body to new possibilities. It could be from the much-anticipated effects of growth hormone. It could just be his own natural progression of development. Most likely, it is a combination of all. In any case, it appears to be a change that is not only permanent, but also opening doors to other awesomeness.

I tried to take some newer standing video tonight, but it turned into more of a dance party. Sometimes Collin likes to stand like a statue and sometimes he likes to feel his legs move. Tonight was one of those latter times. He might be watching too much Yo Gabba Gabba lately. My name is Collin! I like to dance!

PS - Sorry about all of the cackling. He's never been quite this wiggly while standing up and I just couldn't get out of my head the idea that he was doing real dance moves. Maybe he was. Who knows with that crazy guy.

PPS - We did not stage this video in the jungle. That monkey you hear in the background is coming from one of Collin's new favorite toys - a talking monkey he got for Christmas from Uncle Kevin and Laura. He would literally be happy just sitting there with it, listening to the monkeys chattering, for hours. What a funny kid.

Tuesday, December 27, 2011

Collin's Countdown of Awesomeness: #5

We love a good year-end countdown around here, so we thought it would be great to finish out another very eventful year by ticking off the top 5 most incredible things Collin surprised and delighted us with.

No. 5: Another Snotsucker Revelation.

We owe a lot to the good ol' bulb syringe. One day, several months back, I was riding in the backseat with Collin and what started out as trying to help him manage his spit by sucking it out with the nasal aspirator turned into a gigglefest because of the sound and tickle. We have a hard time stopping anything that gets a good reaction out of Collin, so I naturally kept it up as long as it would work.

The big surprise came as I approached his mouth with the blue bulb syringe and Collin started laughing before I even got to his face. I was shocked. Other than flashing lights, I had never seen him react to something based solely on vision - there was always a sound or some other sensation that helped him interpret what was happening. But I hadn't made a sound. And this was an object that was not flashing, not sparkly, not boldly colored in any way. Maybe he had smelled something. I tried it more slowly, but he laughed before I could get close enough for him to smell anything. Maybe it was the shadow of my arm across his face. Nope. I tried all different angles of approach. Always with the same reaction.

This might seem like an insignificant incident to make the top 5 of the year, but it was actually a major wake-up call and insight into Collin's development. Not only was his brain able to process the image of the bulb syringe, but it understood what it had done in the past (make funny sounds and sensations), and what it was likely going to do AND triggered laughter at the anticipation of something that hadn't even happened yet. The complexity of that small interaction took my breath away and forced me to start rethinking how my Collin was perceiving his world.

Monday, December 12, 2011

Merry Christmas From Cloud Nine

As if we didn't have enough crazy joy this week...

This is his first time trying with shoes, so it takes him a minute to get going.

Thursday, December 8, 2011

State of the Collin Address

I've been pretty miserable at keeping up on the day-to-day happenings with Collin, so I'm here to present you with another update on the recent doings of Collin the Champ.

1. Potty Magic
Collin is still doing all of his dirty business on the potty (unless Mama misses a cue) and is now peeing on the potty FOUR TO FIVE TIMES A DAY. He has had a dry diaper after his nap at least a dozen times and dry diapers in the morning twice. I keep telling him that if he figures out a way to signal 'potty' I'll buy him some cool undies.

2. String Bean
Collin is getting long and lean. The growth hormone has apparently kicked in in a major way (see No. 3, as well) and Collin is growing in length much faster than in weight. He is solidly on the charts for height and head (10th percentile - WHAAAAAT?!?!) but his weight is hanging right below the bottom line. We've had to increase his calories twice in the past two and a half months, but now we're running into some ketone issues. With the recent increase, his blood ketone levels have sunk lower than we like to keep them and we're having a hard time getting them back up. The thing is that in order to put on body fat, you need extra calories, but if you have excess calories, your body says, 'Hooray! I'm not starving anymore!' and it stops using fat as its energy source as much, which means fewer ketones (the byproduct of burning fat). We have tried making his meals at a higher fat ratio, but if that continues not to help, we might have to cut back on calories a bit again and increase more slowly.

3. Hold On To Your Butts
It was around this time last year that I first used this title. I hope it's becoming a tradition for Collin to blindside us with awesomeness in December. I've been about to pee my pants with excitement waiting to tell everyone about this, but I knew I couldn't do it without photos or video or certain people would heckle me and we don't want that now, do we?

This is from the end of a long day of program and therapy, so imagine what he can do when he's fresh!

Monday, December 5, 2011

The Great Preschool Debate

Here's your unbelievable news of the day: Collin is turning three soon. As in, three years old.

This means that Collin will soon be "aging out" of First Steps, our area's Early Intervention Program. This group of incredible therapists and our dedicated service coordinator have been with us from the earliest days of Collin's journey and have walked with us through some of the most excruciating times of our life. They were the first to show me that there are lots of special people out there who will love Collin for who he is and they have never ceased to believe in him (though I know their hearts have broken during his rough spells) and to wrack their brains for ideas to help him succeed. But February 15th, 2012, First Steps ends.  So the inevitable question we find ourselves asking is: "Then what?"

As a three-year-old, Collin will be eligible for preschool services and this is the route many, many parents and children choose to go. First Steps has a great transition program that guides you through the process that enables you to find the best match for your child in terms of school and services. Our school system actually has a few classrooms that could 'handle' Collin's challenges very well and would provide him with physical, occupational, and speech therapy every week.

The thing is that we're leaning toward forgoing preschool. Part of it is definitely that it is way too early for me to entertain the thought of being away from Collin for any extended period of time. Because he can't communicate, I have no way of knowing what happened (or didn't happen) when I wasn't there. His signals are so subtle to the untrained eye that I wouldn't have confidence that any teacher, no matter how kind and insightful, could pick up what he's laying down for them. It wasn't until his beloved Michelle P helpers had been caring for and learning Collin for months under my supervision that I started venturing out of the house, and then only for short amounts of time. And they are both very sensitive individuals in a one-on-one situation with an expert (me) on hand. In a classroom, no matter how small, it would take most of the school year to get to know Collin. Plus, Collin is not at the point where he would either benefit from or contribute to the social environment of a classroom. Unfamiliar social situations are overwhelming to him and he participates even less than he does normally. Maybe things will be different when he's four and he will be dying to get away from me. If so, preschool here we come.

So, why go through the process if we're pretty sure Collin will not be going to preschool at three? At three, we get the benefit of First Steps guidance to show us the ropes, whereas at four we would be on our own. It also gives us insight into what our school system has to offer so we can bear it in mind as Collin continues to grow and develop. Finally, we get the benefit of having a whole slew of very talented therapists evaluate Collin and give us their feedback.  I'm bracing myself for the difficulty of hearing what they have to say, but also trying to stay open to anything helpful they might have to offer.

Don't think Collin is getting off easy next year, though! He certainly won't be frittering away his days in some kind of playing-hooky wonderland. He will be getting the same very intentional therapy, exploration, and learning time that he gets now. A combination of NACD program, aquatherapy, hippotherapy, and feeding therapy will keep him plenty busy, not to mention play time with his cousin Ila and other friends. He'll be glad when it's finally time to go to school so he can get some rest!!