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.

However.

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!!

Monday, November 21, 2011

NACD

I am working this afternoon on organizing Collin's new therapy program from NACD and realized that it has been a long time since I've written about this hugely important topic. NACD is so ingrained in our life that I hardly think about it as a separate subject anymore, but given the amount of time I've dedicated to poop lately, it seems okay to give a little attention to another part of our daily life.

NACD is an organization designed to empower parents to take the lead in their child's development. It is for children (and more recently, adults) of all abilities, but it tends to draw many families of children with special needs because it provides practical steps to giving your child the comprehensive guidance they need.

NACD believes in brain plasticity and that with specific, intense, and frequent input, nearly any brain (including a damaged brain) can adapt and improve. But once-a-week therapy just isn't enough to bring about this kind of change.  The child's very environment needs to be transformed into one that gives the input needed for development.

When Collin had his initial evaluation with NACD, he was not responding to much of anything. He didn't use his eyes. He didn't react to sounds. He rarely smiled. He was in another world far away from us. It was explained to us that this was because his brain wasn't receiving any input that made any sense. We embarked upon an extremely extensive and intense daily program that involved everything from dark room activities to deep pressure exercises. Within six weeks, he was focusing on lights in a dark room and within the first three months, he had his first ever laugh (a huge developmental milestone) -- not a random laugh, but a laugh at a specific stimulus (the good ol' bulb-syringe-in-the-mouth trick). We were sold, and it has been part of our daily life ever since.

Collin's most recent program is still fairly global in focus, but we concentrate much less on awareness (he's pretty dang aware) and more on organizing specific actions. His "program" -- the complete list of individual activities chosen for Collin's current developmental state -- takes well over an hour to complete and is supposed to be repeated four times a day. Add in potty time, nap time, and meal time, and you have a pretty good idea of what our days are like. We do our best but definitely don't get through everything every day. The great thing is that Collin enjoys most of the program activities required of him. He does log rolls, different kinds of swinging, vision activities, exercises to encourage weight bearing on his feet, and much more. The pictures below are of Collin in the crawler we built per NACD instructions.



We're so thankful to have found this thoughtful and unique group of people (thanks Tina!!!!) who work tirelessly to improve the lives of so many kids just like our Collin the Champ.


Friday, November 11, 2011

And Now We're Done

Some pictures per our discussion in this post.





Monday, November 7, 2011

How Far We've Come

When I get discouraged about Collin's progress, I like to look back and remind myself just how far he's really come. The first picture is from our first month of Aquatherapy back in June 2010. Collin wasn't seizure free yet. He had to be fully supported because he didn't have control over any part of his body. We set goals for him like holding his head up for 5 seconds without support and part of me never believed them.


I'll let the second picture speak for itself.


And here's a little video for good measure:


For Something Different

As you may know, my good friend Sarah has started a smart, interesting mommyblog called Salt & Nectar. She asked me a few questions recently and they are featuring the answers today.

Tuesday, November 1, 2011

Trick or Treat!

Collin was a punk rocker this year. Amazingly, we had a hard time getting his hair to stay spiked.






Tuesday, October 18, 2011

Happy Tuesday

To brighten your Tuesday, here is a snippet of awesomeness from our time feeding the ducks with Collin this weekend. 

Friday, October 14, 2011

In Case You're Interested...

I am guest posting for the fine ladies over at Salt & Nectar today.

Also, (I KNOW you're interested in this) Collin has now added peepee to his potty repertoire. Definitely not consistently (you can almost see him working to hold it until you get the diaper back on him most of the time), but he enjoys hearing a nice tinkle every once in a while, which is good motivation.

Thursday, October 13, 2011

Bittersweet

We finally bit the bullet and got Collin's parking permit.

Bitter: No one wants to apply for one of these, much less for their child. The fact that it reads "Permanent" across the top was a shock to me when I took it out of the envelope. I haven't been able to bring myself to actually use it yet. It seemed like a great idea when we were wishing we had it, but now that it's in the glove compartment, I can't make myself pull it out and hang it on the rearview mirror that first time.

Sweet: When I finally get past this initial reluctance, it will be sweet sweetness to have (and use) this thing. You don't realize how often people park all up in your business until you're trying to pull a 25 pound limp noodle out of a tiny sliver of door opening and then turn around and plunk him in a stroller that won't fit between your car and your clueless neighbor. It happens all. the. time. and it's a recipe for a red-faced, huffy, and sometimes weepy mama, let me tell you. I used to look longingly at those diagonal lines next to the handicapped parking spaces and all of the beautiful room they entail. And then there are the genius parking garages like the one at our neurologist/geneticist office building, that has the elevators on the opposite side of the garage from the pedway and street entrance, so if you can't park on the pedway floor or right next to the elevator, it's a massive undertaking to get you and your kiddo and everything that goes along with him to the right place. Not to mention the extra-small parking garage spaces that exacerbate the above scenario. In situations like these, we plan our entire trip around parking and I am utterly spent by the time we get back in the car.

We probably won't use the parking permit all of the time. I am able-bodied and fully capable of doing what Collin needs in most situations, so we will leave those precious spaces for people who might need them more than us. But for those other times, when just getting us in and out of the car is enough to send my sanity over the edge and into the Abyss of Frustration and Exhaustion, at least we have another option now.

Monday, October 10, 2011

Wha?!?!?!

This post requires two precursors:

1. A reminder that we at Collin the Champ established long ago that if talking about poop makes you uncomfortable, this might not be the best blog for you. 

2. A humble apology that I have completely dropped the ball in regard to MOOM. It is ridiculous that the MOOM category of posts only has 4 entries. With the year we've had, you should be sick of hearing about Collin's accomplishments by now. My only consolation is that Collin's awesomeness has become such a common thing that I've gotten used to it.

Ok. So now that we're all on the same page:


Collin poops on the potty now, people. As in, every day.

I am not kidding you. I have changed a total of two dirty diapers in the past two weeks and he was NOT happy about either one, making it very clear that I had messed up big time in not getting him to the pot on time.

How did this come about, you ask? Well, on our way home from vacation, we started noticing that every time we would stop the car and get Collin out, he would immediately poop. As we got closer to home at the end of the 12+ hour trip, he grew increasingly fussy and sometimes almost panicky, like he was in pain. I couldn't find anything wrong, but when we got home, he promptly made a massive dirty diaper. I wouldn't have blamed him for rolling his eyes as the lightbulb appeared over my head and I realized that he had been holding it. He didn't want to poop in his car seat. He had been picky in other ways for months, especially preferring to go in a clean diaper. But surely this couldn't mean...

I have to admit that I had assumed that potty training was something we would never do. Before Collin was born, I read books on elimination communication and had dreams of my little one wearing cloth diapers (just for backup) for a brief time before he moved to cute little undies at a crazy early age. Once we found out about Collin's Infantile Spasms and started to absorb the extent of his special needs, I pushed all of that aside. How could he be potty trained when he couldn't even communicate with me? When he didn't have the ability to even sit on a potty? And if he couldn't control his muscles enough to grasp something in his hand, surely he couldn't control his bodily functions. Right?

But something was nagging at me after that incident with the car seat. And I thought that there wasn't any reason why I couldn't just put him on the potty a couple of times a day, maybe establishing a schedule that he could use sometime down the road if he wanted to. It would be a multi-purpose exercise: allowing me to use the information I had read about before Collin (a redeeming experience), giving me the chance to put my child on the potty (similar to the tricycle we talked about here), and opening up a little window of hope. Not that we needed a potty-trained child in order to have hope for his future, but rather the fact that we were entertaining a notion that we had previously deemed impossible - that kind of hope does things to you.

So one morning, with no preparation and very little forethought, I just took Collin's diaper off, trotted him across the hall to the bathroom, and sat him on the toilet. I explained to him about the potty, made peepee sounds (no, I will not make them for you), and just enjoyed the moment, knowing that it wasn't likely that anything would happen since he rarely pees or poops early in the morning. But instead, he started pooping. And he loved it. He smiled and kicked and pooped and pooped and pooped. It was like he was saying 'finally!'

And you better believe I took a picture of that poop. You will never see it on here, though, per Collin's request. (Why the above picture is okay with him, I can't explain.)

I cautioned myself, rationalizing that it could have been a coincidence, but when he did it again after 2 hours of a clean diaper, I ran out and bought a couple of potty seats because my arms couldn't handle the strain of holding him over the vastness of the grown up potty.  (SIDE NOTE: I ended up returning both of those potties soon thereafter. One was an actual potty seat and the other was a cushy toilet seat adapter and they cost over $60 together. The next day, I found a cool toilet seat at a consignment store [NOT GROSS. It looked like new and I sanitized it when I got it home AND it was six dollars AND it looked like a football AND said All-Star on it!] and a few days later I found the exact same potty seat for $3. That means I saved over $50. High fives all around.) He has pooped in the potty every day since. It's kind of surreal. No pee yet. He holds it until he gets his diaper on and then lets loose.  Oh well. If I had to pick one for the potty, it would definitely be the poop.

I have to admit that I have looked at Collin differently these past two weeks. I find myself wondering even more than normal just what is going on in that head of his. It makes me simultaneously excited to find out and impatient to find a way to help him communicate it to me. But then I remember that Collin only does things in his own time. Sometimes he prefers to remain mysterious and sometimes he is practically tapping his foot waiting for you to catch up. What a 2 year-old.

Wednesday, October 5, 2011

Punkin Head

Well, we're back up and running and somehow in the process we ended up with a snazzy new blog. I hope you like it, because I'm not changing it. Sorry about the overwhelming awesomeness of our banner picture. I'll try for something smaller next time.

And here are the aforepromised pictures of our recent trip to pumpkin patch, to reward you for your patience.





Wednesday, September 28, 2011

Checkup Season

Partially because they're good physicians and partially because Collin is such an interesting and perplexing case, all of his doctors like to see him a minimum of every six months. Since they all like one of the yearly appointments to fall around his birthday, two months of our year are crammed with doctor visits. Here is a quick summary of our Second-Half-Of-2011-Checkup-Season.

Pediatrician - This was basically an overview of what's going on with all of Collin's specialists. Collin's pediatrician does a great job of keeping up with all of the tests and results and plans that all of his other doctors come up with and then formulating a more coherent overview. He did an exam and confirmed that Collin is a healthy boy and that he is continuing to progress developmentally. We also discussed handicap parking permits (another post for another time), sleep aids to help with Collin's inconsistent sleep cycle (he suggested melatonin over other options), and some therapy options.

Endocrinologist - Now that he has been on growth hormone for a couple of months, Collin's growth chart is looking much better. We will continue on the current dose and reassess in - you guessed it - 6 months. Side note: Collin is doing a great job growing lengthwise, but due to his new height and his increased physical activity, he is not gaining much weight and his fat stores are decreasing. We just bumped up his calories this week and are hoping to see a little bulk come back soon.

Geneticist - Because I ask a lot of questions and because there is so much uncertainty involved with Collin's case, I've sat through a lot of long appointments over the past few years. But this one stood out as the current winner, clocking in at a solid 2 hours. TWO. HOURS. None of that was waiting. All of it was talking. Needless to say, I'm a big fan of this doctor because he is so thorough and asks so many questions and entertains all of my questions with such seriousness. We left with a whole slew of blood work orders, including blood levels that can become problematic the longer you're on the ketogenic diet (copper, zinc, etc.) and a new panel of x-linked genetic disorders. He was very pleased with Collin's progress and spent a long time shaking him and yelling in his face in his Billy-Crystal-in-the-Princess-Bride voice, trying to get him to laugh.

Dentist - We found a new pediatric dentist who we ADORE. She has lots of experience with kiddos with special needs and was wonderful with Collin. She had spent the whole weekend sewing these special wipeable pillows to make the dentist chairs comfier for kids with sensory issues. You can see Collin here with his green pillow and smooth shades while he listened to Cars playing on the TV over his chair. The doctor assured us that the damage from Collin's incessant grinding is not worrisome at this point and she was very pleased with the health of his teeth and gums. He left with a whole bag of goodies, including a new t-shirt! Score!

Neurologist - It's always good to see Dr. Awesome. He was very happy with Collin's progress and said that as long as he continues to improve clinically, there is really no need to do a repeat MRI, especially since they have never been helpful to us in the past. He also brought up the W-word for the first time: wean. As in, from the ketogenic diet. In two appointments, if Collin is still seizure free, we will do an EEG and start talking about whether or not to continue on the diet. The very thought made my palms sweat. It's hard to imagine life without the scales and calculator and hyper vigilance. But I have months to get used to the idea.

Ophthalmologist - Collin's optic nerve is holding strong, in that it has not grown any more pale and he has not sustained any damage from his nightly use of oxygen (nor is he likely to, due to his age, the low flow of oxygen, and the fact that he only uses it when asleep). So, the doctor reiterated that Collin's vision is not nearly what we would like it to be, not because of his eye, but because of the vision center in his brain. Thanks for clearing that up, Doc.

Now that that's all behind us, our fall will hopefully be dedicated to some therapy, some down time, and lots of fun.

Tuesday, September 13, 2011

Vacay, Sweet Vacay

Hilton Head Island, SC - 2011

Tuesday, August 30, 2011

Good As New

After a five day course of antibiotics and steroids, Collin is his happy self again, much to our relief. Before he became un-contagious, he was sure to pass it on to me, so we've been confined to the house, but we have still managed to have fun, as you can see.





In a way, I'm glad Collin passed his bronchitis on to me. It ended up being an interesting comparison. I was able to take all of the cold/cough medicine I desired and have significantly better muscle tone to make my coughs more productive, but I still ended up at the doctor a week later with the same diagnosis AND the same prescribed medicines.




That means our little Collin is one tough cookie and his immune system can handle itself just fine, thank you very much. We knew this, of course, but it was still very reassuring.






Tuesday, August 23, 2011

Update

It's a good thing we went to the pediatrician when we did, because Collin has bronchitis and the early stages of pneumonia (wheezing and debris sitting in his airways). He is on a steroid and antibiotic for 5 days and if we haven't seen marked improvement by then, we'll be on to a nebulizer. He is still in good spirits and seemed even chattier than normal today, so I'm hoping that these meds will be enough to do the trick.

Sunday, August 21, 2011

State of the Collin Address


Here's an overview of what's going on with Collin right now:

1. Collin is sick
Last Monday, Collin started running a fever and by Tuesday morning he had started coughing. Chest congestion is a big deal for kiddos with low muscle tone because it is difficult for them to cough hard enough to get it all out, making them a high risk for pneumonia. We felt like he was doing a pretty good job and he hasn't seemed to be in any distress, but now we're a week out and he seems as congested as ever, so we will be heading in to the pediatrician tomorrow to make sure we're not dealing with something more serious. All of the coughing and congestion has led to an increase in retching, which also makes everything a little harder.

2. Collin is up to his full dose of growth hormone
We finally got Collin's preservative-free growth hormone and started titrating up to his full dose back at the beginning of July. The only side effects we've seen is some sleepiness with dose increases. He has been a rockstar with the shots and his growth curve is looking good. We go see the endocrinologist on Thursday, so we'll get his verdict as well. Jury is still out on whether it has had or will have any effect on Collin's muscle tone or strength.

3. Collin has BiPAP
The result of Collin's sleep study back in May showed that he would benefit from using BiPAP in his sleep. I'll give more details on this when we actually start using it. It took weeks to figure out that we were not getting approved for BiPAP because it is not technically FDA approved for kids under 40 pounds. We finally found a place in the Cincinnati area who would provide to us, got the machine, and then immediately lost our power for over three days (the machine does not have a battery backup yet). Right before the power came back on, Collin got sick and you can't use BiPAP with a stuffy nose. But we do have it and are interested to see whether it is a huge help or a complete disaster when we start it up.

4. Collin is using his vision
Collin's CVI has made a marked improvement over the summer. He can track things horizontally very consistently - and they don't even have to be light-up or shiny! He also fixes on people's faces when they are talking to him. We were excited enough about all of this, but then we also realized this week that the improvements go beyond even what we thought. I have been using a bulb syringe to suction Collin's mouth during this virus and sometimes it really tickles him. I was reaching toward his face with the bulb syringe Sunday and he started laughing! I thought maybe I had touched his mouth with it, so I tried again, with the same response! I had a great time trying to sneak up on him with the bulb syringe, only to have him spot it and break into chuckles. He has also started turning his head away when I approach with his saline squirter. This means that Collin is able to SEE objects, RECOGNIZE them, and KNOW what they do! That's amazing! Of course, it's inconsistent, as most things are with CVI, but it's a huge developmental step.

5. Collin's Michelle P helpers have started back after our summer break.
It was a long summer full of upheaval and lots and lots and LOTS of Collin and Mama time. It was such a sweet time for both of us, but Collin was very happy that his good friends Amy and Heather started back last week. He loves his time playing and doing therapy with them. We are so grateful to have two women who know Collin so well and who we can completely trust with him. And we are so, so thankful to have received a Medicaid waiver that allows us to pay them. It makes all the difference in our home.

More to come!

Wednesday, August 10, 2011

Special AND Simple?

A few years ago, my good friend Jessica gave me some photocopied materials from a course she had attended on Voluntary Simplicity. The idea behind the class (and the movement it stemmed from) is to choose a simple life in the midst of a culture that is anything but. The benefits of such a lifestyle are far reaching and span from a more positive environmental impact to personal contentment. As I read through the packets, I felt myself connecting with what I found there and started talking through some of the ideas with Kyle (it was not a hard sell): Limit your choices. Choose quality over quantity. Buy only what you need. Share your excess. Concentrate on simple pleasures.

And then Collin came along.

We had thought it was hard to live a simple life in a consumer-driven culture in which shopping is used as both therapy and entertainment, but we had no idea what we were in for. Children bring a new dynamic to the material possessions issue, and Collin added to that a whole slew of heart-wrenching, overwhelming special needs that operated in a vicious cycle that prevented him from getting ahead in any area: You motivate kids who have motor problems by using visual incentives - but what if they can't see? You help kids with visual impairment adapt to their world by teaching them to explore it physically - but what if they're physically incapable of doing so? So if ever there is a possible solution to break through this frustrating, hope-squashing circle - especially a possible solution you could go out and buy!!!!! - who wouldn't leap at the chance? We sure did.

Therapists brought toys and tools and equipment. I trawled the internet for products that might solve any of our many practical day-to-day issues. Some worked. A lot didn't. But a whole string of flops could never kill the buzz I would get when I found something that might make a difference to Collin and clicked the button that would send it across the country to my door.

If I'm honest, what I was really buying was not another light-up toy or fancy spoon - it was the feeling that I was doing something that might, just might, 'fix' what was wrong. It seems silly when you read it in black and white, but it's a powerful thing when you're grasping for any kind of hope you can find.

So, when we moved our entire upstairs downstairs to embark on the dreaded Home Renovation of 2011, it should not have been a surprise to us that our house was overrun with unused products of all kinds. And as I started to sort through things, I found myself revisiting the ideas from Voluntary Simplicity and wondering, Is this even possible for us?

I think the answer, like most things for our family, is, Yes, but it will look different than it might for others.

Now, I have to say: if we hadn't taken risks, we would never have gotten the iPad, which has changed SO MANY things for Collin in terms of fine motor and cause-and-effect comprehension. We would never have gotten the HuggaBebe, which enabled Collin to swing at the park or ride in the shopping cart.

BUT. We're far enough along in our journey now that we can see trends and ask ourselves thoughtful questions before we buy any old thing that may or may not spark some kind of connection for Collin: Does Collin really need this item, even though it is 'adapted'? Has he tried other things like this in the past? If so, how did it go? Is it worth another try? If so, do we still have the original to try with? If not, do we have something similar that we can try first to gauge the response? And we do the same thing with items we already have: When was the last time Collin used this? What was his response? Does he respond now? Is it worth putting away and trying again later? Can any of these items be used for multiple purposes?

Or here's a tough one: Am I hanging onto this for personal reasons? That's a biggie for me. When all of your dreams change, some are harder to let go of than others. There is an amazing Radio Flyer tricycle in the basement that I can pretty much guarantee Collin will not be able to ride on his own. But I am going to put that boy on that tricycle somehow and push him and take a picture of him smiling on it and then pass it on to someone else. Not because Collin couldn't do it, but because he will be done with it.

The result of all of this thinking and asking is that we have a less cluttered, more thoughtful home now that contains only the things we actually use (although it is, of course, an ongoing process). That means fewer items to keep up with and maintain, less tidying to do, and consequently more time and money available for us to share with others. And Collin is definitely not bored or deprived. That old wisdom about kids preferring to play with the box the toy came in rather than the toy itself is even true for kids with lots of special needs. The point of the saying is that kids appreciate the simple pleasures. Collin's favorite toy is an aluminum pan full of dry beans. He loves to swing. He gets out-of-control-excited by flipping the lights off and on or hanging upside down. It doesn't get much simpler than that.

Here's a video of bean joy. He is standing in a very expensive piece of equipment, but we asked all of our questions before ordering it and it passed the test.

Beans! from Annie Kratzsch on Vimeo.


Friday, August 5, 2011

A Happy End to the Stander Saga

For those of you unfamiliar with the perplexing and exhausting world of Durable Medical Equipment, here's how it goes: First, you establish a need for equipment - this is often done with the help of a therapist. Next, you meet with a representative from a DME company, who helps you and the therapist choose the specific piece of equipment that best meets your needs. At this point, the DME company takes over, contacts your insurance company (or companies), gets approval, orders the equipment, assembles it, delivers it to your door, and demonstrates how to use it. The whole process takes up to 90 days. We started the process on this little beauty, which we received 2 weeks ago, at the beginning of October. As in October 2010. Fire up your mental abacus and you will figure out that we should have had it at the end of December or beginning of January at the latest. I won't drag you through the comedy of errors that accounts for the mind-boggling delay we experienced. Suffice it to say that we have it now, and it works.
The purpose of a stander is to help Collin's body get the benefits of weight-bearing that he misses out on otherwise. It aids in digestion, gives neuro-feedback to joints, and helps to form the hip socket. Plus, we have found that Collin doesn't often spontaneously develop a desire to do something different physically - he has to do it before he wants to do it. For example, after lots of supported sitting, he started to want to sit by himself. So, our hope is that after experiencing what it feels like to be upright and bearing weight on his legs, he will eventually want to stand in other situations.

As with a lot of things, Collin surprised us by being much better with the stander than we expected. Having never stood up in his life, we anticipated needing to start at only a few minutes of standing at a time and slowly work our way up. However, the first time in it, he tolerated over half an hour and now averages 45 minutes twice a day. The first time I saw him in it, I was shocked at how tall and little-boyish (versus babyish) he looked. We use stander time to get in some video watching, usually with pinhole glasses to develop his central vision. And as a reward for watching a whole video standing up, he gets to do his absolute favorite - play with dry beans. He pushes his hands through them and flings them all over the dining room, but I don't mind a bit. I don't get the chance to clean up after my 2 year-old the way many moms do, so it's a welcome duty.

Tuesday, August 2, 2011

Maybe My Favorite Picture Of All Time. Ever.

I'll be referring back to this one whenever I need a happiness fix.

Be sure to click on it so you can get the full awesomeness.

Tuesday, July 19, 2011

What IS Wrong With Collin?

Of all of the things I've dreaded since first learning about Collin's diagnosis, the most nagging and joy-robbing has been a fear of the question: "What's wrong with him?"

I'm not sure why that question in particular seized my imagination. People essentially ask it all the time with their stares and beat-around-the-bush questions. But something about the thought of hearing those words just froze my blood. I felt like it would make my sweet and remarkable son an object of scrutiny, put me on the defensive for something that wasn't his fault, and generally make painfully obvious the chasm I already felt between us and so much of the world around us.

Imagine my surprise when, sitting in my parents' living room with all my dear family, I heard the words, "What's wrong with him?"

It was my uncle. The one who taught me to tie my shoes and how to be a good name-caller (He always came up with the best ones, like Chicken Fur and Pack-a-Rat); the one I always had a special bond with and the one with major developmental disabilities.

I was so shocked that I didn't know how to respond, so he went on to try to explain to me why he was asking the question. But he had trouble putting into words exactly what was different about Collin - a problem many people have - and so there was some confusion between us as we muddled through a hard thing together. I'm sad now that I had let my fearful anticipation of a question keep me from having an answer ready. Because of that, the conversation didn't clear anything up for anyone.

But now the first asking of the dreaded question is over and - what a relief - it came from someone I love, someone with genuine interest and no desire to pry or hurt, from someone who in many ways prepared me for this life and for the very question he was asking. It's kind of beautiful, when you think about it.

And the equally beautiful thing that has come out of it is that I have felt free to think more about my answer to the question than the question itself.

As I see it, there are three answers to the question, and they are all right:

1. Hypotonic Cerebral Palsy, Seizure Disorder with Infantile Spasms, Cortical Visual Impairment, Global Developmental Delays, and Feeding Disorder:
Collin's brain did not develop like other children's.
- Because of this fact, his brain doesn't communicate with his muscles well and his muscles have very low tone, making it hard for him to control his body.
- Because of this fact, his brain has a history of throwing off crazy signals in the form of seizures that delay development and cause all sorts of awful problems.
- Because of this fact, his brain has trouble understanding what his eyes, which are anatomically fine, 'see'.
- Because of this fact, his brain has difficulty processing the world around him, making it hard for him to interact with it, which inhibits his development.
- Because of this fact, his brain has a tough time handling all of the incredibly complex steps that go into eating and so he gets his nourishment straight into his tummy instead of through his mouth.

2. We don't know.
We don't know the underlying cause of all of Collin's challenges. It is likely genetic, though we may never know if it was inherited or a spontaneous mutation. There is no name for his constellation of symptoms.

3. There is nothing wrong with Collin.
Track with me on this. Early on this journey, I felt very annoyed by parents who described their special needs child as 'perfect' or 'just how they were supposed to be.' It felt trite or even glib, like they were minimizing the enormity of the situation and the challenges that lay ahead. What particularly bothered me were phrases like, 'God doesn't make mistakes,' and 'God made him/her special.' I thought that people were trying to ease their minds about a terrible thing by pinning it on God and thus making it okay. Granted, I believed in God's providence in my life - that he would sustain us through the crushing difficulties that came with Collin's issues, that I could ultimately trust Him as my Father even though I often felt so tired and alone - but the thought that He would have caused this to 'happen to' my son seemed unthinkable. Then I found this book. I tried to read it to Collin, but I couldn't make it through more than a page at a time at first, because the pictures and words pierced me so sharply. I won't delve too deeply into theology here, I will only say that once I started to consider the possibility that Collin was the way he was by design, my perspective started not just to shift, but to morph. I found myself examining the standards by which I was measuring Collin and the sources of those standards. I spent time meditating on purpose in a person's life. And, finally, I started to accept the mystery that something that doesn't seem like it could possibly be right is not, in fact, wrong.

So even though there is a list as long as your arm of things that keep Collin from being 'typical,' and even though we will probably never know the physiological source of his symptoms, there is nothing wrong with him, because 'wrong' signifies something incorrect or erroneous and Collin is neither. Different? Yes. Confounding? Yes. Difficult? Yes. Wrong? No.

Feel free to ask me about it.

Wednesday, July 13, 2011

Grace

This is something that's been on my mind for months now. It started out as a blog on how to interact with kids who have special needs and their families - a practical how-to designed to alleviate some of the awkwardness and insensitivity I felt like I encountered so often. But once I got past 'don't ignore the presence of a kid with special needs' and 'never use the word retarded in reference to anything,' I couldn't really come up with anything universal. A comment that might seem like a no-brainer encouragement in some instances could be very hurtful if you've just had a rough day with therapies or development or doctor's appointments or you-name-it. The same question asked by two different people could come across as either kind interest or offensive prying.

So, I thought, maybe it has to do with intent. Maybe the point is to make sure that a person's heart is in the right place, so to speak -- to ask yourself what you're hoping to accomplish before you plunge into a conversation with someone else based solely on their differences. And certainly, this is helpful. If you find yourself tempted to ask a question or make a comment about someone before even saying hello, or to pass by without making eye contact, asking yourself Why? can be very eye-opening. But not everyone does that. And even people who do don't magically learn the 'right' thing to say by examining their motives. Plus, as the object of the questions/comments/avoidance (or, the mother of said object), judging intent puts you in the position of mind reader, which isn't fair to anyone involved. People who seem genuinely interested may end up condescending or just nosy. People with the best intentions may come off sounding like jerks. Heck, I grew up with a beloved uncle with developmental disabilities and I live smack dab in the middle of the special needs community and I often don't know the 'right' thing to say to another mother or her child.

The conclusion? If you can't issue general guidelines and you can't rely on good intentions, how can you make people learn how to better and more compassionately interact with individuals with special needs? You really can't. But does that mean that you're doomed to a lifetime of awkward/rude interactions that subsequently ruin your day? Oh no no.

I suggest that the answer is grace. There are all kinds of synonyms for grace I could list: mercy, pardon, favor, etc. The common factor in each definition, though, is that it is freely given. It isn't earned, and in fact can't be. I can't make people say or do the things that are most encouraging or helpful, but I can choose how to respond to them. And lately, I've been trying to choose (and strive and pray) to practice extending grace even when people don't deserve it, even when it seems like they should know better, even when they're doing their best but I'm just in a funk. When people stare, I catch their eye and smile. When a lady comes up to me with a sad look and asks if my baby is blind, I explain to her about cortical visual impairment and introduce her to Collin. When people avoid Collin for whatever reason, I offer them my example of interaction. When I just don't feel like answering the battery of questions about Collin's medical and developmental history, I try to be thankful that someone is interested and answer anyway. When someone uses the word 'retard' or 'retarded' in any conversation, I refrain from kicking them in the kneecaps.

I don't always do this well and I definitely don't do it because I'm trying to be the better or bigger person. I have my own reasons for thinking grace is the answer. I believe in Jesus as the Son of God and everything that comes along with that; and the way that ultimate Grace was extended to me has changed everything about my life and the way I live it. And now I wonder if there is really any other useful way to do things outside of grace. If you don't offer it, what will change? Are you going to teach someone a lesson if you come up with a witty retort? You may feel a little better (temporarily), but likely no one will learn anything. It's grace - freely given favor, mercy, help, compassion - that makes people want to change.

So, I don't know why I was surprised that my interactions with others concerning Collin became markedly better when I started to err on the side of grace. The lady who asked about Collin being blind now knows him by name and makes a point to stop and cheer him on during aquatherapy. I have found myself more willing to share about Collin and have consequently had the privilege of others confiding in me about struggles of their own. By responding with grace, do I keep myself from ever being hurt by insensitive remarks or ensure that every person I encounter goes away enlightened? Not even close. But it has made me more accepting of others and others more accepting of Collin. What's not good about that?

Thursday, June 30, 2011

Reunited, And It Feels So Good!

Aside from the scary retching-stomach-virus-complications and the difficulty getting back on food and the being far away from Kyle, Collin and I had such a great time at Nana and Grandad's for half of June. We visited with family, sat on the porch, took occasional trips into town, ate lots of good food, and watched lots of good movies. And we got to end our visit by celebrating one year of seizure freedom for Collin!

It has been SO GREAT to be back home with Kyle, though. He and Collin have had some major father/son bonding time over the past week. Even though things are still in disarray around the house, we all feel better just being together.

Collin is doing so well and after months of stress from retching and sickness, it feels wonderful to enjoy this happy calm. His retching has all but disappeared and he is quickly regaining his strength from those very difficult weeks. We are doubling up on aquatherapy this summer and I feel like we're already seeing the benefits in the form of trunk and neck strength.

Collin also has finally been reunited with his best bud and cousin, Ila, who turned the big 0-1 on Wednesday! The two spent some fun time hanging out in the afternoon and getting reacquainted after their too-long separation. I know it looks like Collin was bored, but he was really just pooped from all of the excitement.


The home renovation is plugging along. Our bedroom furniture is back upstairs, but we still have a ways to go on the bathroom, which means no shower in the house. But the end is in sight and we're trying to pace ourselves in this last stretch, making time for a little bit of fun and relaxation as we go.

Tuesday, June 21, 2011

Miracle

Collin's last witnessed seizure was one year ago today.

I never dreamed I would be able to type that sentence.

In the past two and a half years, I've slowly learned that sometimes when you pray for an end to something, what you get is the grace to endure what you're facing, and that is a beautiful thing in its own right. But sometimes, remarkable things happen. And for that fact, I am offering up major thanks today.

Tuesday, June 14, 2011

Making the Most of Things

I may not have mentioned this, but three days before Collin came down with his first stomach virus a couple of weeks ago, we had just moved our entire upstairs downstairs in preparation for a fairly major home renovation we had been wanting to do for years. Things were so stable with Collin, so we decided to seize the moment.

Dramatic pause to let irony sink in.

When we got out of the hospital two weekends ago, the reality of what lay ahead of us was sinking in. Collin was still far from well. The bathroom demolition had barely even started. I had had no sleep for days. If we stayed in the house, everything would have to be structured around Collin's sleep schedule. So, we made a tough decision and packed up Collin and myself and headed to my family's farm in northern Kentucky, leaving Kyle behind to kick the renovation into high gear.

Needless to say, the situation is not ideal. Our home is a complete disaster. We're a hundred miles apart. Kyle is working all day, then coming home and working on the house all night (with the help of some amazing friends and family). We were initially only supposed to be gone for up to a week. Instead, Kyle came to visit us on Saturday and then went home for another week of hard work.

But we are making the most of things. I haven't gotten to spend this much time with my parents in years, so (especially now that Collin is doing so much better), I'm enjoying being in the place I grew up, with all of my extended family around. My parents, of course, are relishing the time with Collin and are taking good care of me as I recover from the stress of the past few weeks. We have a different daily schedule that, since we're so far away from home and didn't bring any equipment on our last-minute trip, doesn't include much therapy at all. Instead, Collin watches a lot of Baby Einstein videos and goes outside and plays with the 3 toys I had the presence of mind to bring. And, of course, we talk to Daddy every day. Collin loves to hear Kyle's voice on the phone. His eyes get huge and he turns toward the phone and smiles.

Kyle and I are definitely both struggling with being apart, especially after the difficulty of Collin's sickness and hospitalization. You don't realize just how much someone lightens your load until they're not there. We're just taking it one day at a time and trusting that this won't last.

Thursday, June 9, 2011

Update

Things were pretty touch-and-go Monday late into the evening, but we started to see some slight improvement Tuesday in the form of a few little smiles, better coloring, and more energy. After 24 'successful' (interpretation: not catastrophic) hours on broth and cream, I added a little bit of rice cereal to the recipe to start getting him some more calories. We really started to see the results of that Wednesday morning when he woke up with a smile, laughed a few times throughout the day, and was much more active.

He still has a terrible time with bowel movements, and he feels particularly bad in the evenings. We are still closely monitoring his ketones and have had to give him juice almost every day to keep them from getting too high, since he's still not up to his required number of calories. He also has acquired a cough somewhere along the way (I had the same thing at the end of my go-'round with this stomach bug -- weird), but is handling it well. His sleep is totally off from all of the craziness of the past week and I'm starting to have trouble remembering who and where I am as a consequence. But when I see those precious smiles, it all comes back to me.

Monday, June 6, 2011

Long Story Short

- Because of complications that his stomach virus caused with the ketogenic diet, Collin spent Friday night in the hospital getting fluids and being monitored.

- He was released Saturday with Zofran (anti-nausea) and a doubled daily dose of Prevacid. We were instructed to slowly reintroduce his regular meals. This was not a good idea. It had such a bad effect on his little digestive system that his symptoms were almost worse than ever.

- Collin had his worst morning yet today. Zofran seems to have no effect at all. I spent the day on the phone and email with Collin's dietitians, pediatrician, and the Cincinnati Aerodigestive team. We are slightly lowering his ratio while he's sick to keep him out of ketoacidosis and to make it a little easier for his digestive system to handle his food. We are also doubling his probiotic for a couple of days to recolonize his digestive tract. Finally, we are concentrating on easy to digest foods by using cream instead of oil as his fat source and integrating foods like broth, rice cereal, and eventually baby foods.

- Collin is very weak after so many days of stress and insufficient nourishment. He is currently on a constant drip of chicken broth and cream.

- Please pray that Collin is able to handle this broth and cream combination and that he turns a corner soon. Otherwise, we're headed back to the hospital.

Thursday, June 2, 2011

Collin's First Stomach Bug?

We can't be sure, but all signs point to the fact that we are dealing with Collin's first stomach bug. I'll spare everyone the gory details, but Collin started retching somewhat severely Tuesday afternoon. I thought this was strange after so many good days on the Prevacid, but he was also having lots of dirty diapers, so I assumed the two were related. My first signal that something was wrong was when he woke up out of his sleep retching -- something that has never really happened before. Things got worse and worse and I started to worry about him busting his Nissen, so I called the GI doctor on call at Cincinnati Children's, since we don't have a GI doctor in town and the team up there knows Collin fairly well. I didn't know the doctor I spoke to, but she was very thorough and as helpful as she could be given the circumstances. She felt uncomfortable prescribing anti-nausea medicine given Collin's complicated medical history, but okayed us to give him an extra dose of Prevacid.

Sometime in the middle of the night, after letting Collin empty his stomach, I went on a Pedialyte run and we started concentrating more on hydration. He finally calmed down enough to fall asleep around 6:00 in the morning and seemed to feel much better the rest of the day with nothing in his stomach. We decided to give him a full day with no food to give his tummy time to heal.

This morning, I made a special, easier-to-digest blenderized ketogenic recipe for reintroducing food. Evidently, though, Collin wasn't ready. After only an ounce of food, he started retching worse than ever and carried on for several more hours. I talked to his pediatrician, who recommended withholding food for another few hours then sticking to water and Pedialyte for the rest of the day. When we try to reintroduce food again, we'll do it much more slowly even than this morning.

It's awful to have a child with a stomach bug (we're still assuming that that's what we're dealing with), and our matters are made more complicated by the ever-complex Collin Francis. As I've mentioned before, because of his Nissen, he can't vomit, so we have to help him do it through his feeding tube. Because he can't eat, we have to try to figure out when he's ready for food/water/etc. on our own. Because he's on the ketogenic diet, we can't let him just skip too many meals because his ketones will get too high and send his body into acidosis. But we can't feed him things like juice or soft drinks or even too much pedialyte because his ketones will get too low and he could lose seizure control. We've been checking his blood sugar and ketones every 2-4 hours and adjusting accordingly with water and pedialyte.

Collin, of course, only knows that he feels yucky. Like any other sick 2 year-old, he has spent the past two days in bed watching videos and getting TLC from his parents. As nice as that is, we'll all be glad when this is behind us.

Tuesday, May 31, 2011

Summer Break

I just can't help it - my mind and body still work on a school year schedule. And that means that summer equals break time.

That's only part of the rationale behind our recent decision to cut back on Collin's therapies for the summer, though. Around March or April this year, we realized that something had to give. We were having two, sometimes three or four therapies a day throughout the week aside from the usual doctor's appointments and Collin's NACD program, which takes around 4 hours a day. We never went anywhere or did anything because of all of the therapy. I tried to keep some balance by declaring Fridays to be therapy-free, but Collin and I both ended up spending Fridays recovering from the four previous days. I talked things over with Kyle and it became clear that we were going to have to make some changes.

Now, there is a very special bond with an early intervention therapist. They come to your house and see you in your sweatpants every week. They teach you that there are people who are not at all intimidated by your child. They listen to accounts of terrible weeks or horrible appointments and understand as much as another person can. They think about your child when they're not there and then put their head together with yours to solve the mysteries. They break down the impossible into doable steps. They love your child like some strange and wonderful family-friend-expert morph. This is not the kind of person you want to stop meeting with.

But the fact was that Collin never played except in therapy. He didn't have time to rest or to just be a 2 year-old. And I spent all of my time being his therapist and physician, with hardly any left to just be his mama. These are things we knew we wanted and there are only so many hours in a day, so we decided to let some things go.

So, for six months (we started this plan back in April, but have been too busy with retching and appointments to enjoy it so far), Collin will be having speech therapy once a week, aquatherapy once a week (with some extras thrown in over the summer), and nutrition and occupational therapies once a month. We are also going to try to take it easy on NACD program for a few months, focusing on getting in 2 programs a day rather than 4.

This has opened up some breathing room for our whole family. We're planning to fill with walks, swimming, exploring, and hopefully some laziness.

Saturday, May 28, 2011

Cincy in Review

It was a busy few days in Cincinnati this week, with lots of appointments and info, but nothing a good old bulleted list can't handle.

Tuesday: Pulmonary
- The pulmonologist confirmed that some of the previous suggestions for Collin's central sleep apnea problem are not in his best interest (ventilator, caffeine citrate, maybe even oxygen).
- He also confirmed that he saw improvement in the reports from each of Collin's previous 3 sleep studies.
- He suggested a trial of bi-pap (a breathing machine I will explain later) during our sleep study that night, with the hope that it would actually fix Collin's apneas rather than just cover up the effects of them with oxygen, thus giving him more restful, efficient sleep.

Tuesday-Wednesday: Sleep Study
- We had wonderful nurses, techs, and facilities during this sleep study. It was a welcome change to our previous experiences.
- The bi-pap mask did not go over well with Collin and he took a long time to calm down enough to go to sleep. Once he did, the nurse came in far too often for my taste to adjust the mask in order to get the maximum effect. I understood the need, but I couldn't help but wonder how they expected to get enough recorded sleep to make a determination if they were constantly waking up the patient.
- We won't get any results for 10 to 14 days.

Wednesday: Recovery
- We stayed with Nana and Grandad on the Farm while we rested up from an unrestful night, scrubbed the glue out of Collin's hair, and got ready for another busy day.

Thursday: Nutrition and GI
- The ketogenic dietician was pretty impressed at the way we have managed Collin's diet, balancing the ketogenic diet with the blenderized diet and all of the various requirements that go with each. She made some scheduling and feeding suggestions that I am in the process of implementing, but had nothing to contribute concerning pooping or retching.
- The GI doctor basically said the same thing: 'wish we had more to offer concerning retching.' It's a common problem with no easy answer and sometimes no answer at all. It's wonderful that the Prevacid has made such a big difference (C is consistently happier and more himself now, but still retching during bowel movements and a few other random times).
- Our plan is to give Collin some more time on Prevacid to see if his overall decreased retching actually makes it decrease even more (the vagus nerve can apparently get aggravated by retching, leading to more retching, so the theory is that less retching would make it less sensitive). Once we start growth hormone (hopefully next week), we'll see if it has an effect on his appetite (increased appetites seem to reduce retching as well). If we're still having issues, there is a drug we can try that increases appetite and relaxes the top of the stomach in some children.
- With Collin's improvement on Prevacid, the doctor didn't think it was necessary to put him through any testing at this time (scope, impedance probe, upper GI, etc.). This decision was Collin's favorite part of the trip, aside from the squeaky airgun they used to dry the glue on his sleep study leads - he couldn't stop squealing and laughing about that.

In summary, we are hopeful to get good news from Collin's sleep study that will allow us to even further improve his sleep quality, and even though it was disappointing not to receive any revelations in how to eliminate Collin's retching, it's always good to hear that you haven't been missing something all along.

Thursday, May 19, 2011

Glimmers and Updates

I was just feeling thankful this morning that no matter how hard things are, there are always at least glimmers of hope and beauty in the midst of things and I wanted to share a few of ours:

Collin felt good enough one afternoon last week to do some finger painting. He painted one for his Grandad and one for Heather, who has helped us four days a week since September and is going to be working out of state over the summer.

In all of the retching stress, I forgot to mention that we had our four-month appointment with Dr. Awesome and it was overall very encouraging. He confirmed the minimal seizure activity on Collin's last EEG, noted Collin's 'quite remarkable' improvement in awareness and interaction, and that we are 'moving along, and obviously in the right direction.'

Somehow last week, we got the idea to try something like Prevacid to see if it might possibly help Collin's worsening symptoms. It seemed like an easy thing to try before our appointment in Cincinnati to eliminate one more treatment option and also give us something to do so that we didn't lose our minds. We discussed it with a few trusted therapists and then called the Cincinnati team, who agreed and called in the prescription for us on Tuesday (a particularly bad retching day). It's still a little early to tell for sure - we've had lots of false starts over the past months - but he hasn't retched a single time since his first dose on Tuesday and has been much more himself (happy, talkative, active) ever since. Even if it doesn't last, every break from the stress makes us better able to handle the next episode.

Yesterday, Collin had his fancy-pants two-hour hearing test. This test measures the brain's reaction to sounds since Collin doesn't have good enough motor control to look toward sounds and no language to tell us what he hears. His last test was back in the fall of 2009 when he had just stopped having spasms and had been on heavy medicines for six months, so it isn't really surprising that it was a little unclear as to how well he could hear at that point. This time, Collin had so many giggle fits at the sounds they were playing in his ears that they were afraid they were going to have to stop the test, since he needed to be quiet for it. Eventually, the novelty wore off and he fell asleep and passed all areas of the test with flying colors. We knew he could hear, but every time Collin passes a test that allows us to officially cross something off of our worry list, it's a good, good feeling.

Our sleep study second opinion in Cincinnati was scheduled for July, but we got a call this week saying that it has been moved up to Tuesday. We will see the aerodigestive pulmonologist Tueday afternoon to discuss Collin's history and options and conduct the sleep study that night. Then our GI/nutritionist appointment is first thing Thursday morning. It will be a busy, tiring week, but we're cautiously excited about the possible suggestions and answers we might get to make things better and better for our little champ.