Wednesday, September 30, 2009

Happy October

Here's one more reason why I love fall so much.

I really promise that he's not Asian.

Tuesday, September 29, 2009

Whoa

You know what's annoying? People who have kids and then all of a sudden think that it's okay to discuss their child's bowel movements in polite company. Sick.

So, today I took Collin to the ophthalmologist. And I was going to write about the waiting room that is strategically placed so that you can hear the baby before you screaming its head off in the examination room because of the eye speculums, or about the eye speculums themselves, which look like something the government would not allow in an interrogation, or maybe even about the award I presented while I was there for 'Crabbiest Office Staff On Earth.'

But guys. I was sitting in the pre-waiting room waiting room (they have a series of three, those sneaky dogs) trying to make Collin smile, when I reached down to adjust him in my lap and stuck my finger up to the second knuckle in the poop that was bubbling up out of the back of his pants and onto my jeans. And he smiled, all right. I jumped out of the chair and looked around wildly, but even though there was a sink in the room, it was too small to put Collin in it and there were no paper towels anywhere to be found, not to mention any flat surfaces that weren't covered with eye gizmos or fancy eye drops. So, in a panic, I laid him down in the examination chair and started frantically pulling tissues out of the box on the counter. By the time I got his clothes off, there was poop from his feet to his hair, including his face, and a smear the size of a serving platter on the examination chair.

It was at this point that the nurse stuck her head in the door to summon us to the next waiting room. Either she was busy or she had to go hurl from the smell in the room, but she didn't stay long.

I used every tissue in the box and every wipe in the diaper bag, plus three disposable diapers to get him, me, and the chair wiped down. Then I squirted my hand full of sanitizer and drenched everything in it, threw Collin's clothes in the trash can, took out the bag, tied a knot in the top, and went to see the doctor. I couldn't get the smell of poop out of my nose and my hands were stained yellow.

Don't judge me.

The rest of the appointment was surprisingly smooth. Collin likes to mix things up by doing awesome at the things other babies freak out about and then making the supposedly easy things incredibly complicated. He laughed when they put the speculum in instead of crying. He was like, "Oh! This is what things look like when you open your eyes all the way!" Also, he is getting less farsighted and we may even have to weaken his glasses next time we go. A doctor's appointment with good news! Novel idea.

Friday, September 25, 2009

Button Toucher

Button Toucher from Annie Kratzsch on Vimeo.

Someone is slightly obsessed with his g-tube button. Apparently, this is really unusual and most kids either don't notice it at all or are really bothered by it. My theory is that this is when he would be starting to play with his feet if he could get them to his hands, but since he can't, button is the stand-in.

Thursday, September 24, 2009

Keeping Up With Meds

Here are Collin's breakfast meds. His bedtime meds are the same, plus one more. He has a much smaller selection for the 2:00 feed, but that batch requires me to use the mortar and pestle, so it still feels like a big deal. I keep an updated schedule with dosing on his health spreadsheet and, if we have several changes at once or big changes of any kind, I post all meds on the fridge so Kyle and I can remember which way is up.

Our most recent change in meds came yesterday during our appointment with Dr. Awesome. He took a look at Collin - at his eyes retreating back into his pumpkin head and the hair growing all over his face - and decided that we will wean the prednisone faster than planned. So the dose will be changing every two days instead of the six and then three we had previously decided on. This way, he'll be off in just under two weeks. Phew. It's interesting how the optimism from each of these drugs turns into a relief that they're over and an excitement to be free of the side effects. We will be sticking with the B6 (which we started Tuesday) for a full week before determining whether or not it's working. If it's not, we'll move on to Vigabatrin (Sabril) which the FDA approved last month and has only been available in the US for a couple of weeks! Hello prescription insurance!

On a side note of awesomeness: Dr. Awesome is leaving the country next week and I asked what we should do if something comes up while he's gone. He wrote up a simple little contingency plan for us and then...GAVE US HIS PERSONAL EMAIL ADDRESS. And just to prove that he would be able to get our correspondence, he took out his iPhone and read me an email from his inbox. It was nothing confidential, don't worry. I think it's safe to say that we're one of his favorites.

Tuesday, September 22, 2009

A Smooch for Social Security

Ever wondered what it would look like for a miniature, grouchy, teething sumo wrestler in tiny glasses to eat pureed carrots? Me too. And here you go. I think he may even have swallowed some of it.

That's right. Thanks to his steroid meds, Collin-San from the ACTH days has returned, which means that his already squinty eyes - along with the rest of his facial features - are being slowly eaten whole by his colossal cheeks. Thank goodness we're weaning the prednisone, because he can barely push back his bulgy face rolls to open his eyes. I'm not kidding. Believe it or not, his eyes are open in this picture.

We are currently in the process of applying for a Medicaid Waiver to help us out with all of Collin's medical expenses and the first step of said process is to apply for Social Security. Even though we knew we would be denied based on income, we packed up an impressive stack of medical records and prepared to spend most of the morning downtown. Imagine our surprise when we were called back for our appointment at 9:00 EXACTLY and were out the door in 15 minutes. We kind of stumbled outside in a daze, totally thrown off by how efficient and cooperative our representative had been. So, I am sending a big smooch on the cheek to Social Security for making ONE of our tasks smooth and easy. I can think of a few doctors' offices that could take a page out of their book.

CASE IN POINT: I had to call Dr. Awesome's office SIX TIMES today in order to get our B6 prescription called into the compounding pharmacy. The pharmacy was incredible, as usual, and had the solution made up and waiting for the doctor's call so we could have it today. So here's a smooch for them, too.

We ended the day on a high note when I got a wild hair and decided to try Collin in his suspended bouncy seat even though he can't sit up at all and can only hold his head up for a few seconds at a time. We packed him in with blankets within an inch of his life, and the result made my week. This video comes at the request of Nana and Grandad.

Big Boy from Annie Kratzsch on Vimeo.

Monday, September 21, 2009

Fourth Time's A Charm?

My post today was going to be about our fantastic Just Us Weekend, but then Collin's seizures started to get worse today, which took the wind out of my sails. After his second cluster of 20 spasms, which were noticeably stronger than the first set, I paged the neurologist on call at the children's hospital (who just happened to be Dr. Awesome) to figure out what to do with Collin's meds. Since we never got full seizure control on the prednisone, he decided to start the wean right away and wean over three weeks (we had delayed and lengthened weaning since Collin seemed to be doing so well). While we decrease the prednisone, we will give B6 one more try, and if that doesn't work, we're on to Vigabatrin.

Also in the news, our insurance company and the hospital that controls THE ONLY CHILDREN'S HOSPITAL IN THE CITY had another falling out. It was basically a big foot stomp in a colossal series of baby fits over money. Except that they dragged the children and families into their mess since their disagreement interferes with coverage by drastically increasing the amount for which families will be responsible. Luckily, it turns out that Kyle's company was somehow able to bypass all of this, but I spent a lot of the day being furious and writing my councilman, representative, and governor. Plus, what about all of those other families? The job of the hospital is to provide care and the job of the insurance company is to provide coverage, so why don't they do it? Parents of children with illnesses and other conditions have enough to worry about without dealing with the ridiculous power struggles of what basically amounts to big business.

There's a different kind of exhaustion that takes hold on days like these. It comes from being charged with adrenaline and poised to act for an extended period of time. Even when things calm down and Collin falls asleep after a cluster of spasms (he gets extremely sleepy after seizures), I'm still on edge because I want him to wake up and show me that he's okay. Plus, I think that our fantastic Just Us Weekend was part of the problem today, because we had SO much fun and spent SO much relaxing time together that Monday came as a bigger shock than normal, even without these kinds of stresses.

Sunday, September 20, 2009

Collin's Stuff

There's doing dishes, and then there's doing dishes. These are Collin's - bottles for storing milk, bottles for practicing oral feeds, big and little syringes, pump extensions, etc. etc. It's a bit much to keep up with sometimes, so we keep color-coded tubs on the counter - yellow for dirty and pink for clean - to help streamline things. The good thing is that keeping all of this clean makes washing and stacking diapers feel like a little treat. Well, that might be a small exaggeration.

Thursday, September 17, 2009

Success

Collin has officially entered the world of solid food. He still won't take a bottle, but he certainly doesn't mind a spoon of squash.

Wednesday, September 16, 2009

Brains

As you can imagine, we have had to work through a slew of issues over these last months and continue that work daily. One of the most powerful for me has been the complete demolishment of my assumptions about the brain and it's value in terms of making us who we are. I don't think I had realized how integral I assumed the brain to be to my identity. I got straight A's from 1st grade on, valedictorian, scholarships, good teaching jobs - these things felt important to me and so much of the praise I received was for my intellect. Not only that, but I had good sense, a creative bent, and an interest in deeper thinking. That was who I was and I think I was proud of it.

And when we got pregnant, I just knew that our child would be advanced in every way. And we would be so proud.

So when my brain turned on me and everything about who I thought I was was vaporized by a scalding anxiety and crushing despair, what was I left with? I remember sitting on the toilet lid with my head in my hands crying and crying because I couldn't control my own mind. My intellect was broken and my sense and creativity were powerless against this consuming monster. It was like mourning the loss of myself.

And now Collin's prognosis includes the opposite of what I expected for him. Major delays at the very least. He can't do most things other babies his age can do. Maybe he will stun everyone and advance in surprising ways. But maybe he won't. Maybe he will never even talk. And how will that affect how I see him? How will it impact his identity?

Of course, the easy answer is that it won't affect my love for him at all. And that is true. But think about what that really means. If your loved one changed in some way - if your child didn't look at you or smile at you, if your spouse suddenly didn't care about anything she used to love, if your friend somehow lost the ability to communicate with you - what would that do to your relationship with them? What would be left of them to love?

One day, my dad was rubbing my head while I cried and told me that this didn't really change anything important. That sounded like a ping of clarity to me. Of course, that isn't to minimize the psychological pain I was experiencing or the seriousness of the situation; it's just to say that there is something else to us. And it's not a leftover - it's an essence that is easy to confuse with other things in a culture that teaches us to revere intelligence and being the best at something. I guess I always believed in the spirit or soul, but those are words that are too obscure to use meaningfully in everyday life. But when my brain failed, there was still something left that was unaffected by that change. I discovered that, inexplicably, I was still Annie.

I love Collin. Not his brain or his skills or where he falls on any percentile chart out there. I am proud of him, whether or not he ever excels at anything or learns to read or walk or talk. Just because he is Collin.

Tuesday, September 15, 2009

Meant For Each Other

My goal this week was to find a pediatrician who will be a better fit for our needs. I know I probably haven't sounded like it due to my recent frustration, but I really do like our current pediatrician - we just need a little more time and support for Collin. For a few weeks, I had been polling Collin's therapists and other doctors for suggestions and settled on three practices. So yesterday morning I called to set up interviews with the doctors to determine who would be the best match.

Except that instead of things going the way they should when a parent is trying to choose the best care for her child, I spent the greater part of the morning talking to receptionists and office managers only to be told that one practice 'just didn't have room for us' and the other practice was 'not taking any more special needs children'. That last one sent me into a bawling fit of indignant frustration and shocked hurt. Who says something like that? Would she say 'we're not taking any more kids with allergies' or even 'we're not taking any more kids of his ethnicity'? How could they deny him BASED ON his needs? What kind of sense does that even make for a doctor? I was so discouraged. Until...

DUN DUN DUNNNNNN...

I called the third practice. The office manager asked me how much time I wanted with the doctor. I said ten or fifteen minutes would be great. She called back to say that the doctor wanted to schedule me during his consult slot so we could have more time to talk. So would 11:20 be a good time for me? The next day?

So this morning Collin and I trekked to the office (which felt like a big house and had an e.e. cummings quote painted on the wall in the waiting room) and met with Mr. Right. Dr. Right I guess I should say. He spent a solid half an hour with us, listening to Collin's whole story (and it's quite a story to hear all in one sitting). Guys, he asked me tons of thoughtful questions and explained his view of his role in the scheme of Collin's situation and listened to MY expectations and didn't seem remotely rushed or overwhelmed and at one point during our talk, I noticed that he was rubbing Collin's foot.

*Starry-eyed sigh*

So, between Dr. Awesome and Dr. Right, we've got Collin pretty well covered.

Monday, September 14, 2009

Tweet Tweet

We are now Twittering, if you're into that kind of thing.

Saturday, September 12, 2009

Doctor Awesome

We had a shockingly efficient appointment at the neurologist's office yesterday. I think we were in and out in an hour and a half and most of that time was with the doctor (henceforth referred to as Doctor Awesome). We didn't even have to eat the snacks I always pack to get us through those afternoons.

We shared how pleased we have been with the prednisone and how many positive changes we have seen in Collin while on it: his wakefulness, alertness, interaction, eye focusing, neck control, smiling, and vocalizing. And of course the fact that his spasms have been minimal. And then Doctor Awesome explained to us that we can't keep Collin on prednisone long term and it's almost time to start weaning him off.

'I'm sorry, what?' you might ask. 'Something is working and we have to stop it?' you may ask. 'Why did we ever start it in the first place?' you might ask. Excellent questions, my friends. I asked them all myself. I guess the answer is that there is a small chance that a course of prednisone could permanently solve the spasm issue. And when I say small, I mean minute in the extreme. But apparently it was worth a try. So, we'll start the wean next week and it will take 3 weeks to complete. We'll watch carefully during the wean (like we ever don't watch carefully) and if the spasms start to pick up again, we'll try one more round of B6. If that doesn't work, it's on to Vigabatrin - the drug from Canada that can cause retinal damage.

As I've explained before, Collin's neurologist is many, many kinds of awesome; one of them is that he is a man of action. Collin has had a white, furry-looking tongue for almost two months now and I've been to the pediatrician TWICE to see if it was thrush, which would have explained why he didn't want to eat anything by mouth anymore, since thrush makes your tongue hurt. Both times, the doctors declined to treat him for thrush because he didn't have spots on his cheeks as well as his tongue and because they were hesitant to add another drug to his regimen. I can appreciate the desire to minimize unnecessary medicines, but let's look at the big picture here, people. This kid is on some seriously heavy-duty drugs - is a yeast killer really going to make that much of a difference? Not to mention the fact that he WILL NOT EAT BY MOUTH. Problematic, I would say. Worth a try of a relatively benign drug, I would say. Evidently, Doctor Awesome agreed, because he took about two looks at Collin's tongue, heard that he wasn't eating, said 'he should be treated for thrush,' wrote a prescription, and - bam - we were treating him within 3 hours. It hasn't even been 48 hours yet and already his tongue is less white, so here's hoping.

On schedule for this week: interview pediatricians.

Thursday, September 10, 2009

Cold Feet

I tried to explain to Kyle the concept of baby leg warmers, but he had his own ideas for how they would work most efficiently...

Wednesday, September 9, 2009

The Wonderful World of Prednisone

A couple of short weeks ago, bedtime was indistinguishable from the rest of the day - Collin slept about 22 hours out of the day, so bedtime just meant moving him from the living room to his crib. Now, however, he's warming up to a bedtime ritual - coconut oil massage, pretend nursing with mom (he doesn't drink anything, it just comforts him), reading with dad, some alone time feeling one of his toys (Chuck the Duck, pictured here, is a current favorite), then swaddle and go to sleep. I can't describe the sweetness of getting to experience a little bit of what most mothers do every night.

Of course, we owe a lot of this to prednisone, which seems to be a fairly good match for Collin's body chemistry at this point. He is averaging one cluster of spasms every two to three days and, though he is irritable, it's nothing like we saw on ACTH. He has a fairly normal daily schedule going, he smiles everyday, he opens his eyes and looks through his glasses often, and he is so much more vocal I can hardly believe it. But the goal is for the spasms to stop completely, so we're not sure how long he will stay on prednisone. Not to mention the fact that it suppresses his immune system so much and we're heading into cold and flu season and his entire medical team is trying to impress upon us the seriousness of guarding him from germs. Thanks guys. I can always use a little reminder to worry about Collin.

Tomorrow is a Neuro Day, during which we will discuss our trip to Cleveland Clinic, find out the results to the most recent round of tests, and come up with the next phase of our plan. I'm putting together my typed outline of notes and questions to take with us. We have to be united and in top shape since our time with the neurologist is so intense, so we'll go over everything together ahead of time. Maybe do some stretches.

Saturday, September 5, 2009

Home Again, Home Again...

Here is the story of how we drove the 6 hours to Cleveland and back again in the same day.

First, let's take a minute to acknowledge that we had literally been preparing for this trip all week. I had made lists and lists of lists, done around a thousand loads of laundry, collected a big fatty stack of personal records and medical records from all over the city, had everything meticulously packed and was ready to go Thursday night.

Because Kyle can't afford to miss any more work than necessary, we got up at 1:30 IN THE MORNING on Friday and headed for Cleveland for our 10:00 am appointment. It was long and dark and most of Ohio stank for some reason, but we made it in good time and then spent a very stressful and cramped half-hour in the parking garage of the Cleveland Clinic trying to change Collin and pile on the stroller everything we might need for our appointment and whatever tests might follow.

Cleveland Clinic itself was an experience I would easily call surreal. It sat on some of the most beautiful grounds I've ever seen - pristine, well-designed, zen-like. Being in the facility itself was like a cross between visiting the future and a resort. Kyle called it a 'weird space spa.' The halls were wide, airy, and unobstructed, lights shone up and down the walls, and meditative music played everywhere. Everything was state of the art, the cafeteria served delicious food, and the employees all wore spiffy uniforms. Eerie.

But the fact of the matter is that, no matter where you are, a doctors appointment is a doctors appointment. We filled out silly, repetitive paperwork, stripped Collin down to get weighed (at which point he had a massive poop, per usual), and were ushered into a little room that looked pretty much like every other examination room.

EXCEPT (side note alert, side note alert) for the fact that there was a THERMOSTAT on the wall. As in, a thermostat that actually controlled the temperature in our own room. Now, I don't know how much time most of you spend in doctors' offices, but if it's much at all then you know all too well that these offices are designed with the purpose of either freezing your eyeballs out of your head or melting your hair off. Maybe to get you into a state of submission, I don't know. If I had a nickel for every appointment for Collin that concluded with me sweating all the way through everything I had on, I'd have a lot of nickels.

So, we smiled goofily and adjusted the temperature to our liking and waited for the doctor. He came in about ten minutes later and apologized for our wait (do they have one of those emoticon faces for totally incredulous?), asked a battery of questions, examined Collin, looked through his records, read his MRIs, PET scan, and EEGS, and told us that we were doing everything we could.

Yep.

As the appointment was winding down and something in me could feel the end drawing near without any mention of tests of any kind, I kept asking leading questions that started with "Sooooooo," but got nowhere. He smiled and told us he would send his report to our neurologist and left.

And it was 11:30. AM.

Our plan had been to stay in a hotel, eat at a fun restaurant, and generally make the most of what we assumed would be a weary series of events. Instead, we looked at each other, bleary-eyed and dazed by the whole experience and agreed that we wanted to get the heck out of Dodge and sleep in our own beds.

On the way out of town, Kyle was suddenly struck by the fear that we had missed something that Collin's neurologist was hoping for - that maybe we were supposed to have tests run and we should have stayed there and demanded that they make the trip worth our while. So, we called the neurologist's office back home and asked this very question, hoping to save ourselves another trip. The neurologist, because he is about twenty kinds of awesome, immediately called the doctor we had just seen at Cleveland Clinic, discussed the appointment with him, decided that he was satisfied, and told us to 'come home.'

So we did. And on the way, we decided that our twelve-plus hours of driving was more than worth it. We had confirmation from one of the leading experts in the field of pediatric epileptology/neurology that we hadn't missed anything - that Collin has been getting every chance possible from the get-go. We would drive a lot longer than twelve hours to know that.

Thursday, September 3, 2009

For Your Viewing Pleasure

video
Collin is still in the process of coming out of his Topamax cocoon this week. He's turning into a bald, pudgy, squinty, squealing butterfly.

Tuesday, September 1, 2009

Not Ashamed

Many of you know quite a bit about the trials Kyle, Collin and I have endured since February, but few know the extent of the darkness we have walked through together. Between Collin's first stay in the hospital and his diagnosis of Infantile Spasms, our family faced a devastation of a different nature. I have been finding lately that it is difficult to write truly and accurately about Collin's journey and the things we are learning through it without referencing this time. So, consider it referenced.

When Collin finally came home from Children's Hospital in March, Kyle and I had very little knowledge and no medical support for helping us adapt to the feeding tube and Nissen wrap. We were only told by a well-meaning but misguided nurse to avoid 'gagging' (what we now call 'retching') at all costs, because it could break the Nissen wrap; this, in Collin's case, would mean aspiration and potentially pneumonia or death. So when, 10 days after we brought him home, Collin started to retch violently while he was in my arms, spewing milk through his feeding tube and up into the air while his face turned purple, my brain broke.

I don't mean to make light of the situation, I only mean to speak the truth. After the strain of a month in the hospital, fearing for my child's life and enduring countless tests, procedures, and surgeries, witnessing this much-feared event snapped something in my brain. I immediately started shaking and felt that I was going to throw up. I had to give Collin to Kyle and leave the room. By that night, we had determined that we should go to the emergency room, at which point we were admitted for a hellish three-day stay that determined nothing. By the third day, I was not eating, drinking, or sleeping at all. I could not stand to touch Collin and could barely look at him, yet I would not leave the room. I remember lying on the cot next to his bed planning my steps across the hall to the nurses' station to ask how I could get admitted to the hospital as soon as possible. At least there they would hook me up to an IV.

Luckily, Kyle got the name of a psychiatrist who specialized in postpartum issues and, by some miracle, got me an appointment for 2 hours later. When the minutes finally dragged by and I shuffled, hunched and shaking, out to the car and into her office, I learned that I was experiencing Acute Stress Disorder. This, she assured me, was a normal reaction to intolerable circumstances, and I would get better.

I wish I could say that that was the turning point - that knowing what was wrong helped me overcome my crippling fear and bewildering sadness. Instead, after a brief high following the appointment, I plummeted into a deep, dark postpartum depression. There are no words to describe the alternating numbness, terror, and despair I wrestled with during those days and weeks. I was consumed by irrational fears and thoughts. I woke up every morning positive that Kyle was dead. I had to talk myself into going downstairs, because I felt certain I would find something wrong with Collin when I got there. I thought I was going to die. And worse, I thought I would never be the same again.

My mom saved us by coming to live with us, because most of the time I could not even bear to be in the same room with Collin, much less care for him. I spent my time in the back room by myself watching nature shows over and over because anything with people caused too much anxiety and sadness, yet I had to have something on to keep me from losing the shred of control I was clinging to. By this time, I could barely even speak, for reasons I can't quite explain. My legs shook when I tried to walk, my throat closed when I put food in my mouth, and my body felt like I was constantly bracing myself for the next terrible thing. Yet, at the same time, I couldn't bring myself to care about the next terrible thing, because it all seemed pointless and hopeless. I won't even go into the implications all of this held for self-image and self-worth. I didn't feel like a bad mother - I didn't feel like a mother at all.

But slowly, bit by bit, and with the help of loved ones, I started to throw everything I had at this consuming monster. I got on some medication. I found a killer therapist. I got chiropractic treatment. I started to read books on postpartum depression. I wrote things on cards - scriptures, true and/or encouraging statements - and carried them with me everywhere I went because I couldn't see the truth on my own and needed to remind myself constantly of what it was. I kept a book in which every morning I wrote the things I would do to help myself get better and every evening I wrote my successes for the day. At the beginning, my goals were to drink water and go outside the front door for five minutes. My therapist taught me to celebrate every small victory, and I remember how excited everyone was the first time I ate a half turkey sandwich and how proud I was the first time I walked all the way to the corner. I like to look at the page when my main success for the day was: 'I smiled.'

Gradually, I started to sit in the same room with Collin for part of the day. I held him sometimes. The picture above is of one of the first times I held him - I couldn't stand to hold him in my arms, but I could handle having him in my lap. Then I started changing diapers. Then doing tube feeds. Then playing. Then cuddling. My mom started to go home on the weekends and Kyle and I slowly learned how to be parents in the midst of everything. Finally, we put together an exit strategy for my mom. I remember the day she pulled away for the last time. I stood at the front door, holding Collin tightly and making him wave and crying from happiness and sadness. It felt so strange to go back inside just the two of us.

I had been caring for Collin on my own for about three weeks when we got the Infantile Spasm diagnosis.

As I'm sure you can imagine, I thought twice about sharing all of this. But I didn't think about it more than twice, because I am not ashamed of it. I am thankful for the friends and family who pulled me through. I am more adoring and appreciative of my son than I thought possible. I am proud of myself for the lengths I went to for healing. But I'm not ashamed.