Tuesday, August 28, 2012

'Tis The Season

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

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

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

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

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

Tuesday, August 21, 2012

For the Fans

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

Thursday, August 16, 2012

Some Silliness

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

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

The Adventures of Collin

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

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

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

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

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

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

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

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

Collin narrowed his eyes and waited.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, August 11, 2012

Childhood: Where Does Therapy Fit?

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

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

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

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

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

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

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

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

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

Thursday, August 9, 2012

Ups and Downs

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

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

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

Tuesday, August 7, 2012

Leaving Collin

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

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

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

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

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

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

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

Thursday, August 2, 2012

Another Gold Medal Event for Collin

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

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

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

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

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

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

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

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