Monday, November 30, 2009

Ear Stink and More

Collin had a fever this weekend. He started getting congested. He had weird rough patches of skin all over his arms. And I was only toying with the idea of taking him to the pediatrician this morning until he developed the proverbial Last Straw: Ear Stink. I started noticing that one of his ears smelled disgusting. I gave him a bath, gently swabbed it out with a q-tip, rubbed it with lotion, but nothing worked: every time I got near his head for a snuggle, I was knocked on my butt by a rank smell coming from his right ear. And THAT is what got me on the phone to our pediatrician, Dr. Right.

Turns out Collin likely had some kind of bacterial infection this weekend, which spiked his fever, developed the congestion, and even triggered the eczema outbreak. And the source of the Ear Stink? Impacted ear wax. In fact, his abnormally tiny ear canals were so packed with ear wax that Dr. Right literally could not get it all out and could not get even a glimpse of Collin's ear drums. He even used this scary long metal tool and a water pick, but it wouldn't budge.

Know what this means? Collin probably does not have fluid in his ears. He failed his hearing test because of his Ear Stink. The line on the tympanogram came out flat because they weren't measuring the movement of his eardrum at all - they were measuring the movement of his earwax.

So now he's on an antibiotic for his congestion and fancy lotion for his eczema, but we're just waiting to see if his ears work things out on their own. If not, it's off to the ENT we go.

Thursday, November 26, 2009

Monday, November 23, 2009

Cue Hallelujah Chorus

We just got back from the neurologist's office and, people, Collin's EEG is 90% improved. As in, no longer hypsarrhythic. As in, no longer shows signs of Infantile Spasms.

Let's all just take moment to let that sink in and smile.

...

That was nice. Now, what this means practically is that we're ready to start weaning off of Sabril.

Side note first: We did not actually have an appointment with Dr. Awesome today; we were only scheduled for an EEG. When the test was over, I asked our amazing tech, who has done almost all of Collin's EEGs if she thought I could ask one of the nurse practitioners a question about splitting up Collin's Sabril dose. Well, she walked right out in the hallway and grabbed Dr. Awesome and he came in and sat down, read Collin's EEG right in front of me and had a nice little chat about what it all means and what to do next. He also did a lot of yelling (Dr. Awesome has an inordinately loud voice, in case I never mentioned that before, and he isn't afraid to use it) and Collin had his eyes clamped shut the whole time; then the minute the doctor walked out of the room, Collin opened one eye and peaked around. He might as well have said, "Is he gone?"

ANYWAY, this drastic improvement in EEG, together with Collin's lack of seizures since his first dose of Sabril, means that we're going to start weaning from Sabril. When Dr. Awesome first mentioned this possibility, my eyebrows shot halfway up my forehead and I said something really intelligent like, "Are you sure?" We've spent months looking for something that would work for Collin and now that we've found it, Kyle and I are what you might call reluctant to let it go. Reluctant as in you'll have to pry it out of our cold, dead hands. But the doctor explained that there is a strong likelihood that the Sabril has caused a change in Collin's brain chemistry and that with a careful wean, he might no longer need it.

And this is where we take a break to give Sabril a big bear hug - one of those that makes you feel like your eyeballs are popping out of your head but you don't mind. (And remember Claire? You should know that Claire has called us almost weekly during all of this to stay on top of things and make sure we have everything we need and check on Collin. How incredible is that? Everybody wave at Claire. I, on the other hand, am going to grab Claire's hands and jump up and down like a crazy-excited little girl.)

Concerning the sleeping havoc I mentioned yesterday, Dr. Awesome says that those kinds of sleep disruptions are common in kids whose brains have been tinkered with the way Collin's has over the past months. So we're going to divide his Sabril dose into two smaller doses and give him a little melatonin at night to try to help get his sleep pattern more regulated. Fingers crossed. Although after the good news today, I have a hard time being too upset about not getting much sleep at night.

So, in summary: Collin's brainwaves are significantly closer to normal and no longer show signs of Infantile Spasms, so we're going to start to wean him slowly from the Sabril, continue weaning him from the Klonopin (clonazepam), and put him on some melatonin to help regulate his sleep patterns. Also, Dr. Awesome is awesome and Collin is a champ.

Sunday, November 22, 2009

What the Heck

For weeks and weeks, Collin has been on a good sleep schedule. Naps, though a little on the long side, came at normal intervals and nighttime was fairly awesome for a baby. Then suddenly something nocturnal crawled in his head and now he can't bear to be awake in the daytime. Last night he woke me up around 4:00 and who knows how long he had been awake, since it usually takes him a while to work himself up to the squeals and talking that are loud enough to disturb the parents. He fell back asleep around 7:30 for about an hour. Then he woke up tonight around 9:00 after sleeping pretty much nonstop since 12:30. During those 8 and a half hours, I literally COULD NOT wake him up. No noises or movements or cold water or stinky breath blown in his face could get anything more than a twitch or a little squeak of protest out of him.

Like most things with Collin, it would be easy to speculate for hours on the cause - medicines? medicine timings? medicine doses? growing? teething? fighting off a virus? something we haven't thought of yet? - but we don't like to mess around too long in the Speculodrome (so named by our friend Nicholas) because it rarely yields a concrete answer and usually leaves me with shoulders pulled up to my earlobes with stress. Instead, we follow our if-it's-not-an-emergency protocol: do our best to cope with it while it's happening and try not to think about it every second while we wait for it to go away.

I am going to run it by someone at the neurologist's office when we go in for our EEG tomorrow and see if we can get some helpful feedback, but I'm certainly not holding my breath. We're all in the same boat when it comes to figuring things out with Collin.

Tuesday, November 17, 2009

Where Am I?

I've been thinking a lot about the Welcome to Holland piece I passed on a few days ago, and even though it is totally true, I feel like it left out an important stage of the trip, at least in my experience.

I don't think the flight attendant announces that you're in Holland when you land. She smiles at you as you get off the plane and you smile back, thinking about what you're going to do first in Italy. But as you make your way through the airport, your smile starts to fade. Things aren't making sense. You don't recognize any of the phrases you studied. Things don't look right, though you can't quite put your finger on how. When you finally get out into the streets, you become disconcerted. It's cold and you can't locate any of the landmarks you expected to see and the street names don't match up with your map. You try to ask for directions in Italian, but no one understands you. And that's when you start to get scared.

You're obviously not where you're supposed to be, but you can't figure out where you ARE. You're alone and you don't have any of the tools you need to rectify the situation.

And then somebody walking by notices the panicked look on your face and stops. She looks concerned and asks you something, and though you can't understand the words, you know she's asking if you need help. But you don't speak the language here, so you can't ask the one question you most desperately need answered: Where am I?

At this point, you realize that you're crying and you feel ridiculous because you're a grown up and you should be able to figure this out. But the stranger puts her arm around your shoulders and leads you around the corner to a little cafe and sits you down and orders you a yummy warm drink and just sits with you. Somehow, sitting there with someone who lives in this place is comforting, and something in you starts to relax the tiniest bit. You look around the streets and watch people coming and going, marveling at the idea that people are living normal lives all around you, and that's when you see it, on a sign down the block. You're in Holland.

And THEN you get new guidebooks.

And THEN you see the windmills and tulips.

And eventually, after you've set up your own life in Holland, you become a person on the lookout for panicked faces in the crowd.

Monday, November 16, 2009

Finally, A Test We Can Pass. Sort Of.

Collin had a hearing test today because the doctors who reviewed our request for additional hours of therapy through his Early Intervention program require it whenever there is a communication delay. Collin's developmental delays are global, so they wanted to make sure he didn't have a hearing issue before they gave us more hours of speech therapy. The test he had is called an ABR and it was a fairly painless procedure.

Collin just cleared his throat, which means, 'Easy for YOU to say.' He was less than enthusiastic about the little tube they had to put in his ear to deliver the sounds to which they were monitoring his response. It was a soft, tiny, flexible tube and it didn't even go all the way in his ear because his ear canals are ridiculously small, so it just kind of sat there. He tried to pull it out approximately 49 times and whenever one of the higher frequency noises came through, he sort of growled and thrashed his head from side to side since I was holding his hands.

About halfway through, I had pretty much resigned myself to the fact that Collin had hearing loss. The test wasn't picking up the appropriate response at the low frequencies and at this point in the game you have just developed a sense that tells you when things aren't going well. So, I wasn't surprised when they told me that we would need to come back for more testing to determine more about Collin's hearing loss. My mind was racing and my heart was sinking, but I wasn't surprised.

But then one of the women administering the test (who were both wonderful and helpful, thank goodness) had an idea to try one more test that would test Collin's hearing in a way that bypassed his inner ear. And the result was completely normal. So then they did a tympanogram to see whether he had fluid in his ears and the line that was supposed to have a tall peak was almost completely flat. So, the answer to all of this is that Collin has fluid in his ears, which means that his hearing is like trying to listen under water. His pediatrician is having us do nose drops 6 or 7 times a day to see if it clears up on its own and if it doesn't we'll start him on an antihistamine.

I'm still just not used to finding simple, nonscary answers for things. Something happens to you when you look up your baby's gas pain movements on the internet and find that he has a seizure disorder that will change the rest of your life and his. It's like your brain has this incorrect but very real-feeling 'a-ha' moment in which it realizes that all of the things it secretly fears really can happen and that some things it doesn't even anticipate can happen too. And now that my brain is stuck in that way of thinking, I think it's going to take a lot more experiences like this hearing test to bring it back to a more moderate reality in which sometimes the terrible things do happen, but sometimes they don't.

Sunday, November 15, 2009

Windmills and Tulips

A friend who is walking a similar road to mine and Kyle's sent me this today. She warned me to have tissues handy and I didn't listen, but I should have.

Welcome to Holland
by Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, November 11, 2009

Gift

Birthday Treat from Annie Kratzsch on Vimeo.

What do you get your favorite person for his 30th birthday? The person who has walked through the fire with you shoulder to shoulder, sometimes having to throw your arm over his shoulder and drag you along? The person who grounds you and listens to you, who makes you believe that you are capable and beautiful? The person who shows you Christ and keeps you on your toes and allows you to live with honesty?

The person who can't enjoy a gift if you spent money on it? ;-)

This is the best I could come up with.

Tuesday, November 10, 2009

Monday, November 9, 2009

Long and Lean

Well, not quite. But compared to sumo Collin, it's practically true.

We had our visit with Collin's wonderful nutritionist today, which meant a weigh-in and length measure. Apparently his increased activity (he's a kicking machine and gets put out when I get in his way) combined with sleeping like the dead has been a magical combination, because he dropped an ounce and grew another 5/8 of an inch. That means an inch and a half in the past four weeks, people, after two months of literally no growth at all while he was on prednisone. And since his weight stayed about the same, it dropped him from the 95th percentile of weight for length (how fat he is for his 'height') to the 75th in two weeks. So we're back in cloth diapers again (thank goodness - I try not to think about how many of the blow outs we've had these past weeks could have been avoided if we hadn't been in disposables) and he can actually move his legs while he's in them. Exciting stuff.

Collin is also getting pretty pumped for his dad's birthday on Tuesday. Even though we're going to spend part of it at the pediatrician's office and part of it at the Medicaid office (which will be totally worth it because it's going to save our financial heinys) Collin and I have a few tricks up our sleeve to squeeze in some fun.

Thursday, November 5, 2009

Ugly Truth: I Get Jealous

I was talking with some friends tonight about how there are aspects of God that don't seem to go together, but they just do. You can't understand it, it's totally mysterious, but it's true. We were talking about this in the context of the book of Lamentations, a book about suffering, and it got me thinking about our situation. I've written before about how so many parts of our experience with Collin don't seem to go together. We feel disappointment and excitement at the same time, happiness and grief simultaneously. This made me remember a paragraph in When Bad Things Happen to Good People that I have often thought about since reading the book, since it rang so true with me. In it, the author describes the jealousy of a suffering person. It isn't a vindictive jealousy that wishes bad things on other people or even necessarily wants others' good fortune for themselves. It's more like this jealousy recognizes the difference between a life with and without their particular grief or challenge and feels the pain of that difference. When I read this, it felt like he was putting words to something I had been ashamed to admit even to myself - that I see the difference between our situation and many others and it breaks my heart.

It is hard for me to see babies developing at a 'normal' rate. It is hard to hear them babble, watch them take the world in through open eyes, touch their mother's face. It is hard to see a baby breastfeed or suck down a bottle or gobble up food from a spoon. It's hard to see moms who get to take their babies home from the hospital right away, who fear shots at the pediatrician instead of another discussion of unattained milestones, who run errands and have playdates with their babies instead of doctors appointments and therapies and seclusion because of a compromised immune system. It's hard to hear other parents complain about spit-up and crying and shots - NOT because their complaints aren't legitimate (they are legitimate) and NOT because I look down on their complaints (I don't) - just because I wish that those were my complaints, too.

I don't want anyone other than Collin and I don't wish Collin's challenges on anyone else. I don't love the children of my friends any less or more because of their lack of challenges and I don't begrudge my friends their experiences. But I can't help but look longingly sometimes at what I wish both we and Collin could have.

I'm writing this as I watch Kyle play with Collin, getting him so wound up with smiles and squeals that he's not going to want to go to bed. It is so beautiful. And, true to the complexity of life, I can't tell whether this knot in my chest is from the difficulty of admitting my jealousy or the overwhelming love I have for my son.

Sabril: Week 4 -OR- Choked Up

It was one month ago today that we saw Collin's last seizure.

That's a sentence I've been desperate to write since Collin's diagnosis of Infantile Spasms back in June, but I was starting to think I would never get to. The seizures might not stay away forever, but boy am I thankful for this month.

Everybody wave to Sabril, the sponsor of this month's happiness.

Tuesday, November 3, 2009

Progress

Friday afternoon, we finally got the results from our EEG last Tuesday. And it was good. There was marked improvement from all of Collin's other EEGs. It wasn't completely normal - there was some mild evidence of the hypsarrhythmic (chaotic) brainwaves that characterize Infantile Spasms and there were some discharges that could have been other types of seizures - but it was much, much better than it has ever been. And that's on the lowest dose of Sabril; because, even though the typical protocol is to increase in dose every week for three weeks, Collin stopped seizing after the first dose, so we didn't see any need to go up. Now, however, we have jumped up to the middle dose in the hopes of normalizing his EEG completely and we will repeat the test in three weeks. Here's hoping.

Collin is tolerating the new dose of Sabril very well - no increased sleepiness or any other symptoms. His eyes have been open so much more the past week or so and I am almost positive that he was looking at me once yesterday. He smiles on and off all day in response to noises, touch, play, and sometimes just whatever good jokes he's telling in his head. He has started kicking, which is awesome to watch, and is extending his arms up to his face instead of keeping them clutched at his chest. Last night, I even saw him put his hand in his mouth. Neck and core strength are about the same and he's nowhere near holding his head up, much less sitting up, but we're plugging along on that and giving lots of thanks for the great things we are seeing.