Sunday, August 30, 2009

The Farm

Time on my family's farm is good medicine for everyone. You can see why. We spent a beautiful weekend there - chock full of homemade food and naps - and came back ready for another whirlwind week, the climax of which will be our trip to Cleveland Clinic on Friday.

Thursday, August 27, 2009

Better

There are at least five reasons why today was better than yesterday:

1. Collin cried twice, and not because a doctor was tormenting him. Once, the light got in his eyes and once I startled him as he was waking up. It's still kind of a quiet cry and it takes him a few seconds to work up to it, but this comes after almost a month of no sounds at all, including crying. You don't realize what a sweet sound your baby's cry is until you don't hear it for a long time. I was trying to be sympathetic and comfort him, but I just kept smiling.

2. It was Collin's first day off of Topamax. He didn't retch even once. (Hey Topamax, come over here so I can punch you in the face.)

3. We got a little smile out of Collin during his physical therapy session this morning and his therapist was so excited I thought she was going to kiss me.

4. Someone at Children's Hospital called to tell us that they can send Collin's blood to another lab that doesn't require such a big sample to run the test, so we don't have to go back to get more blood drawn. Three cheers for whoever figured that one out.

5. I baked a cake and made squash fritters to go with our otherwise microwaved dinner. Not on the scale of numbers 1-4, I know, but I have really missed baking and all things 'normal' feel like a special treat these days. Collin sat in his bouncy chair in the kitchen and supervised. I made him promise not to tell his dad how badly I destroyed the kitchen.

And tomorrow morning I get to sleep in. That counts for five in itself.

Wednesday, August 26, 2009

Worst Day Ever. Again.

Kyle's not sure where I got this idea, but for some reason I was thinking that seeing a geneticist would actually be helpful. Maybe I'm spoiled by Collin's neurologist, but I was envisioning a hey-we're-all-in-this-together-and-we'll-get-to-the-bottom-of-it-somehow kind of experience. Instead, the visit consisted of a somewhat rough physical exam, the discussion of some of the conditions we may be facing (along with an explanation that there are no treatments for any of them), and the suggestion that we might not want to have any more children in the relatively likely event that we find some sort of genetic component. Then he ordered another round of blood and urine testing.

So, we went home, I had a good, loud cry, and then we packed everything back up and headed to the children's hospital for Collin's blood work and spinal tap. And on the way there, he broke his six-day seizure-free streak with a cluster of spasms. I jokingly asked Kyle what else could happen today, didn't like his response, and made a mental note not to ask that question again.

At the hospital laboratory, I explained how much trouble they had encountered on our previous visit, so they called in the IV team so they would only have to stick him once. Except that they stuck him FIVE TIMES (including once in the head, which almost sent me over the edge), bruised him horribly, and still didn't get everything they need, so I have to take him back again this week. Then we picked him up and walked over to get his spinal tap, where they 'missed' on the first go and had to try again. While Kyle and I held him down. The picture above is of Kyle and Collin while we were waiting to get out of the hospital. If you squint, you can see Collin's spinal tap band-aid hanging out.

The whole ordeal took about nine hours, so we were all, needless to say, drained when we got home. Collin slept like a rock for a while and Kyle and I made an oven pizza and sat there in a daze.

BUT...

When we put Collin to bed, we kept hearing this strange rattling sound and discovered that a toy I had laid next to him because I thought the yellow might attract his eye was just within reach and he was batting at it over and over again and sometimes even gently touching it with his fingers.

Take that, crappy day.

Tuesday, August 25, 2009

Son of a Gun

So, I got a call from the medical assistant at the neurologist's office today in which she started off by saying, "Now, don't get too scared when I tell you this."

Blink.

It turns out that the compounding pharmacy had been mixing Collin's B1/B2 suspension incorrectly. More specifically, they had been making it at FOUR TIMES the correct concentration. So, instead of getting 50 mg twice a day, he had been getting 200 mg twice a day.

Blink. Blink.

Never mind the fact that we had called and even gone into the pharmacy saying, "Boy, this seems awfully thick, considering we CAN'T DRAW IT UP INTO A SYRINGE." Hm, maybe because you're mixing it like chocolate fudge instead of chocolate milk.

Luckily for us all, B1/B2 are water soluble vitamins, which means that Collin can just pee out what he doesn't need. I'm trying not to think about what would have happened if it had been one of his other supplements or an actual med. However, the side effects of high doses of B1/B2 include headaches and nausea. No wonder the poor little guy has been trying to throw up so much, with that on top of his Topamax.

Don't hate the compounding pharmacists, though. They were honest and mortified and, naturally, gave us a bunch of the corrected concentration for free. They've been wonderful and beyond helpful in every other regard. But wow. We have enough on our plates without having to worry about whether or not everyone else on Team Collin is pulling their weight.

Monday, August 24, 2009

Mother's Day Weekend

I know it's late August, but this was Mother's Day weekend for me. For kids, husbands, etc., Mother's Day is about honoring and caring for mothers, but for mothers it's about something much tougher: letting yourself be honored and cared for. It's no easy task, but rewarding in the extreme. And since I sort of missed my first Mother's Day in May (a fact I'll explain in another post soon), I claim this one instead.

Saturday morning was full of some of my favorite things: yardsaling, the farmer's market (where I bought peaches and flowers), hot coffee and scones, and my sister. Then I went home and took a delicious cuddle nap with Collin while we waited for our friends, the Hollands, to spend the afternoon with us. When they showed up, I learned that Sarah and Kyle had 'conspired against me,' as Sarah put it, to surprise me with an afternoon at the movies with Sarah. After a tea latte and Harry Potter 6, we went home to find the husbands preparing us a dinner of fried green tomato BLTs. Deee-licious. Next, my sister came over to hang out with Collin while Kyle and I went to a concert I had been dying to see - tickets generously and thoughtfully supplied by my brother-in-law. This was the first time either of us had missed Collin's bedtime regimen, which was hard, but we could rest easy knowing his aunt would take good care of him and I spent the evening enjoying my favorite band, shoulder-to-shoulder with my favorite person. But we both missed Collin something fierce and ended up pulling him out of bed when we got home for a few minutes of snuggles.

Sunday morning we had a scrumptious breakfast at my mother-in-law's house, followed by a fun visit with the family, and then went home to take a nap. Finally, we enjoyed the beautiful afternoon by strolling around the zoo (those are the elephants playing in the water behind me and Collin).

As Kyle said to me this morning, I can't remember the last time we had such an enjoyable weekend. Even when opportunities for fun present themselves, we're often either too exhausted or the logistics just don't work out with Collin's schedule. Not to mention the fact that neither one of us is very good at temporarily putting aside responsibilities to do the important work of having fun. But I think we are finally realizing that it's critical. In order to best take care of Collin, we have to take care of ourselves and allow ourselves to be taken care of.

Saturday, August 22, 2009

The Week That Wouldn't End

Because we hadn't had enough this week, Friday morning we went to the ENT just to make sure Collin doesn't have an ear infection and that his tiny ear canals and snorty throat don't pose a problem. Turns out everything looks fine except that there may be some fluid behind his ears that could be muffling his hearing somewhat. The words "put in tubes" got thrown out there, at which point I said something to the effect of "Whoa there, partner. We've got bigger fish to fry." So, we'll reassess in a couple of months.

The most interesting part of the visit was when the doctor used this fancy tool that really looked like tiny torture devices used under a magnifying glass to clear out Collin's earwax (and there was a lot of it surprisingly) and see through the tiny space to the eardrum. The nurse had to hold Collin's head very still while I held his arms and stabilized his body. I'm not sure if it was the feeling of something cold in his ear or that he has always hated to be held down, but after a few minutes of it, I started to see his bottom lip come out and his brow furrow. And then he cried. It was a strange cry, like it was coming from far away, but it was definitely Collin's cry. Now, I have mixed feelings about this. On the one hand, I have barely heard a sound out of Collin for almost a month because of the Topamax and he stopped crying altogether soon after he went on it, so I was bizarrely thrilled to hear this. On the other hand, I figured it must be pretty awful to make him react like that, considering that he got stuck in every limb of his body yesterday and didn't make a peep. Everybody (because Collin is some kind of magnet for medical office staff) kept commenting on how well he was doing since they're used to typical baby cries, and one well-meaning lady wanted to talk to me about how beautiful he was while I was holding my child down and looking at his distressed little red face. Apparently I didn't do a good job of keeping my feelings off of my face, because that didn't last long.

Things got considerably better after this point: leisurely lunch with Collin's uncle and grandfather, long Collin-and-Mama nap on the couch, and the first walk riding in the stroller like a big boy! Hooray for weekends!

Side Note: Kyle was very concerned about the move from the carseat to the stroller seat because A) don't we need to be able to see him? and B) there's nothing to protect him from dogs this way. What a great and entertaining daddy.

Thursday, August 20, 2009

Why I Had To Stop At Dairy Queen

Today was supposed to be a relatively easy day. And any time I start like that, you know what's coming.

After Collin slept right through his physical therapy session despite the PT's best efforts (except for the two times he woke up to retch), we ran down to the children's hospital to get his last round of blood and urine tests. While we were waiting to register, Collin launched into the biggest cluster of spasms he's ever had. I stopped counting at 60 and started to gather our things to go have them page the neurologist on call, but by the time I got everything together, he had stopped, so I decided to just wait and watch him. When we finally made it to the laboratory waiting room, he had 24 more that got him started retching. (Dear Topamax, I hate you.)

In the lab, he finally settled down and we had possibly the two nicest nurses of all time, but they had trouble with Collin's veins, which were apparently delicate today. They needed to collect a ton of blood for all of the tests and ended up poking both of his arms (one twice), his heel, and his finger over the next TWO HOURS. Naturally, he cooperated like a champ. When they were finally done and Collin's limbs were all wrapped up in purple sticky gauze, we realized that in all of this time, he hadn't peed in the little bag they use to collect his urine specimen. And he proceeded to not pee for another half an hour while I put his hands and feet under the faucet and ran warm and cold water over them. Finally, I gave up and just sang to him and he filled the whole bag. My singing has that effect on people.

When, at long last, we left the hospital, business hours were almost over, so we sat in the parking garage while I made the half dozen medical and therapy calls I had needed to make this afternoon and then headed out to drop prescriptions off at Collin's two different pharmacies. At this point, Collin was so exhausted from his 100 seizures, 6 vials of blood, and 2 1/2 hours of being jabbed, squeezed, and jiggled that he passed out. In his wet noodle state, his already floppy neck lost all control and every time I accelerated, his pumpkin head would fling down toward his chest. So, I drove around town with my hand in the backseat holding up Collin's head the best I could and occasionally sticking my finger in his nostril to make sure he was still breathing.

And THAT is why I had to stop at Dairy Queen on the way home. And let me tell you - when I pulled into the parking lot and saw that it was a drive thru, I almost cried with happiness.

Wednesday, August 19, 2009

Baldy McBalderson

It is true that Collin's first experience with baldness was my fault. But I'm not sorry - it was for his own good. His funktastic cradle cap was out of control and grossing me and everyone else out so I treated his scalp with olive oil numerous times and scraped it off. Unfortunately, his hair came out with it, leaving an unsightly bald spot right on top of his head. When he started to give me lip about it, I would just ask, "Would you rather be bald or scabby?" That would shut him up.

Then last week, his hair suddenly started falling out by the handful. Kyle amused himself by pulling tufts out and marveling at them. Several of his therapists were concerned that it was another side effect of his crazy meds, but there were baby hairs growing in underneath, so we knew it was natural.

After a few days of this, he was looking pretty mangy, so we helped him about by trimming the longer wispy parts. So now it almost looks like a little buzz. Not the same as his shock of silky black hair, but still pretty darn cute.

So since Collin has lost his distinguishing characteristic, I told him that he needs to learn a trick or something. He decided to go with opening both of his eyes at once!


And when that got a good reaction, he really wowed us by looking through his glasses!



I would trade hair for eyeballs any day.

Tuesday, August 18, 2009

Marathon Day

We started off the morning at the pediatrician's office for Collin's six month checkup. Some people dread the pediatrician because of the shots. We dread the pediatrician because it usually goes a little something like this:

Nurse weighs Collin. "Oh, he's a little guy, isn't he?"
I smile.
She opens the milestone notebook to the 6 month page for me to read while I'm waiting for the doctor.
I close it as she leaves the room.
The doctor rushes in and doesn't remember anything about Collin's condition, which is, shall we say, complex.
He starts to examine him. "Wow, his ear canals are really small. You should maybe see an ENT.
"Wow, I can't feel his little testicles. You should maybe see an endocrinologist.
"Wow, Infantile Spasms. That's a tough diagnosis.
"Have a great day."

The only good thing about our visit today: HELLO GROWTH CHART!!! Collin saw the positive side of the growth chart for the first time in his life today, hitting the 5th percentile in weight and the 3rd percentile in length. Sweet sweetness.

Around noon, we headed to the neurologist for Collin's fourth EEG. He decided to start things off with a bang by launching into a cluster of 30-plus spasms as soon as all of the electrodes were bandaged up on his head. When we saw the doctor THREE HOURS LATER we determined that Topamax is probably not Collin's medicine of choice - considering the daily spasms and the constant sedation and the 20-30 massive retches a day and the fact that he no longer makes any noises or even cries since he's been on it - but since he just hit the max dose today, we're going to give it to the end of the week and then start to wean it if we haven't seen dramatic improvements. At that point, we will try prednisone, which has shown promising results in some studies. We will also be trekking to Cleveland Clinic to get a second opinion from the head of their pediatric epilepsy department, with our neurologist's blessing. He's even scheduling it for us. Then we have the last round of blood tests and the spinal tap next week. We'll be back at the office in another three weeks to do it all again.

I say "we" have the last round of blood tests, but really it's Collin. Collin is the one who gets poked and prodded and doped. As I pumped syringe after syringe of medicine into his feeding tube tonight while putting him to bed, I just remembered that as exhausted as I am after a day like this, Collin is the one who is really living it.

Monday, August 17, 2009

Weekend

It was a busy weekend for Collin. We increased his Topamax twice; though, as of Sunday morning, he was still having at least one decent cluster of seizures a day. This has pretty much put an end to the eye opening we were enjoying everyday and we haven't really seen any smiles or much interaction since late last week. He's also sleeping 20-22 hours a day.

Naturally, this is all tough and discouraging, but we did have a few encouraging experiences over the weekend. Saturday, we went to a picnic at VIPS, the provider of Collin's vision therapy. An overwhelming majority of the kids there had multiple issues just like Collin, and we were welcomed warmly. Nearly every single parent introduced themselves to us and shared openly about their own experiences. It's hard to explain the effect it has to be among a group of people who understand your daily struggles. Just being there made us feel 'normal' in a way and we left feeling encouraged and hopeful. VIPS also offers a weekly playgroup for visually impaired kids and their parents, so I'm hoping to work that into our schedule soon.

Then on Sunday, a group of our dear friends decided to fast for Collin throughout the day and then meet to pray for him in the evening. We joined them and, throughout our hour of prayer, were totally overwhelmed by their insights into our hardships and their tender compassion for Collin and our family. I wasn't prepared for their tears and snotted all over poor Collin the whole time. There's no way to describe what it feels like to be surrounded and embraced and lifted like that.

On a side note, Collin has started to go bald in a major way (pictures to come soon) and he shed all over the couch we were sitting on during prayer. It looked like I had been holding a little shedding dog in my lap instead of a fat little sweetie.

Saturday, August 15, 2009

Six Months

Here's to the longest, darkest, richest, most crushing and wondrous six months of our lives. Thus far.

Friday, August 14, 2009

One Day At A Time

I always thought that staying in the present was useless, new age advice that sounds wise but means nothing. I think that's a reasonable take on it until staying in the present becomes a matter of sanity and even survival. When you're dealing with something as terrifying and bewildering as Infantile Spasms (and whatever it's underlying cause turns out to be), there's really no other viable option. At the beginning, we tried to live minute to minute. Now, I would say we're able to live more day to day.

So, we get up in the morning and go look at Collin as soon as possible to keep our minds from straying off into the future or falling off a cliff into scary possibilities. It may sound simple or lame, but I light a good smelling candle and play music to set the tone for myself and use my senses against my brain to stay in the here and now. I make a massive list in the morning (thanks for the great idea, Shelly) of all the things I need to do for Collin that day, one or two things I have to do around the house, and at least one thing I enjoy. (This is to keep Kyle from harassing me to death. He also makes me put 'nap' on the list everyday, though I'm not very good at following through on that one.) This gives me something tangible to work on because most of the things I do with Collin don't yield any visible results. He doesn't suddenly hold up his head after physical therapy (that's him in his lycra swing in the picture) and can't focus on anything even though we do vision therapy. But when I do those things and cross them off the list, they suddenly have an outcome I can see. We also keep a record of every tiny thing Collin does that looks or even feels like development. At first, I thought this was kind of like cheating - that we were trying to convince ourselves that he was progressing. But now I realize that his development is going to be at a very different rate from other babies and that it is important for us to celebrate his successes everyday. Yesterday, for example, I noticed him touching his G-tube button over and over again. He would take his hand away, then bring it back and touch the button with his fingers. I called Kyle in and we watched with rapt amazement and then I wrote it down on his chart.

That takes care of my actual activities during the day and even a lot of my thought processes, but it's still a struggle. And I would be lying if I said that I don't go round and round with God on this. My friend Heather recently asked me how this experience has affected my relationship with God and I answered that, like most things recently, it's paradoxical. On the one hand, I am clinging to him for dear life and I know that the growth and richness that has already come of all this is his gift. But at the same time, I can't wrap my mind around Collin's continual suffering and I don't mind telling Him so. I feel like, 'Where the heck are you?'

And I guess the answer to that question is, "Here." Now. Today.

Thursday, August 13, 2009

More Meds for Collin-San

Collin somehow manages to be even cuter first thing in the morning, so I enjoyed him for awhile as I waited for the neurologist's office to open today. I'm slowly learning how this process works and knew I needed to start as early as possible. I left our details and a simple but clear message with the person who answers calls for 'urgent medical issues' and crossed my fingers. At 1:00 in the afternoon, I got a call from someone who seemed to be the assistant to the nurse practitioner; she was calling to see what my question was. I swallowed and calmly explained the same message, at which point she put me on hold and walked across the hall to relay the information to the nurse practitioner. Efficiency, it seems, is not stressed in this particular office. She then came back to the phone to tell me that the nurse practitioner would talk to the neurologist and call me back later. Which meant six o'clock.

Sigh.

I do appreciate and respect Collin's neurologist and nurse practitioner. It's the system that makes me want to knock some heads together, as my dad would say.

In the end, the neurologist decided to aggressively ramp up Collin's Topamax to what sounds like a dose fit for a sumo wrestler. Which is appropriate, I guess. This is going to require us to be on the lookout for potentially dangerous side effects like electrolyte imbalances, inability to regulate body temperature, and belly bumping his parents. Even though I know it's crucial to stop these brain damaging seizures at nearly any cost, I'm not looking forward to this dose increase because it has been so nice for Collin to be opening his eyes and having more semi-lucid moments recently. I know he'll be a fat little zombie now.

Speaking of fat, Collin's so-awesome nutritionist came today and discovered that Collin is getting too fat too fast. He is now on a baby diet. Sort of. Yes, that does mean that my breast milk is killer. It could easily beat you up.

In unrelated but equally momentous news, Collin has lost all of his back hair. When he was born, he looked a lot like a woolly monkey. He looks kind of naked now. When we oil him up before bed and fasten on his cloth diaper, I get the urge to pull his hair back in a slick black bun. Unfortunately, his head hair is falling out too, so there goes that dream.

Snorting and Retching

I'm sitting up with Collin during his middle of the night feed in case he starts retching so I can unhook his feeding tube and vent his tummy quickly if I need to. He's been retching at every single feed for the past couple of days and we can't figure out why. --Whoops, sure enough, there was one. -- The flow rate of the feed doesn't seem to matter at all and it doesn't appear to be because his tummy is too full, because nothing really comes out when we vent him, though we keep doing it just in case. In all likelihood, it's med related, like so many other things.

Another side effect we're all dealing with - this time to the clonazepam - is that Collin is extremely snorty. He breathes a little like a longtime smoker with a bad cold and has sudden outbreaks of gross coughing now and then. We think this is because the medicine has side effects of dry mouth and cough, so his saliva is really thick and hard to clear. Suctioning with a bulb syringe does nothing to help and neither does positioning differently. It doesn't seem to bother him one way or the other, but it makes for a noisy night over the monitor and I have the added problem of mommy sympathy symptoms. It's pretty bizarre, really. When I'm close to him while he's having this rattly, snorty breathing, I can literally feel it in my throat and chest and it makes me cough and clear my throat. So Collin doesn't clear his throat even though it is full of junk and I clear mine constantly even though nothing is really there. What a pair.

Collin is also still having one or two clusters of spasms everyday, so I'll be calling the neurologist in the morning to ask about increasing Topamax some more.

Wednesday, August 12, 2009

Special Needs

The other day, Kyle casually referred to Collin as having special needs and I practically hit the floor. Not that there is any question in my mind that Collin has many, many needs that other babies don't have - it's just that the connotation of that particular phrase is so snide and even cruel that it took the wind out of me to hear it used by my favorite person about my second favorite person. And I immediately flashed back through innumerable generic times when I used similar terms out of total thoughtlessness. I couldn't even claim ignorance since my own beloved Uncle Brian has many of these same 'needs', so it really makes me want to punch my old self in the face.

The look on my face must have been something fierce because Kyle looked confused and sort of scared and ended up explaining that he doesn't associate anything negative with those words anymore - that we don't have to be afraid to use them because they're true and because it is, in a way, special that Collin has so many unique challenges that we have the privilege of helping him face. Our love for him is completely unaffected by his needs - unless it is some way fortified by them - and we can even take a sort of pride in the words because they describe Collin and we are beyond proud of him.

So, the next time you hear someone throwing around these or similar words to be condescending or otherwise mean, kindly write down 'collinthechamp.blogspot.com' for them and explain that you know someone incredible who has special needs.

Right after you punch them in the face.

Monday, August 10, 2009

Calling Team Collin

This blog is so helpful in allowing me to process things as we face them and allowing all of you to keep up with Collin at your own convenience; but, I'm also hoping that it will be something we can share with Collin one day. It's a unique way to record not only his story, but your participation in it. So, every once in a while, just post a comment - even if it's just to tell us that you're reading. It is great for us so we know who is following us and one day Collin will be able to hear messages from all the wonderful people who were pulling for him this whole time. (I finally fixed the comment function so anyone can post - just write your comment, click 'Post', choose 'Name/URL', and type in your name.)

I spent a lot of time on the phone with the neurologist today. They don't think that the B6 caused the spasms, rather that we hadn't adjusted his Topamax to match his weight and the B6, by making him more alert, triggered them. Maybe so. We're going to get him stabilized on this higher dose, then reintroduce the B6 and see what happens; we got such good results in terms of opening his eyes and interacting that it would be worthwhile to have him on it if there aren't any adverse effects.

Collin stayed awake more than usual today, which means that we got to do more of our therapies than we have been recently - maybe that's why he stays asleep so much. This is a picture of him 'waking up' after what I'm fairly certain was a fake nap while I was trying to get him to practice rolling over.

Sunday, August 9, 2009

I Love You, 8:30

Everyday recently, pretty much without fail, Collin suddenly wakes up, opens his eyes, and smiles right around 8:30 in the evening. The first day it happened, Kyle and I were giving him his massage and Collin opened his eyes all the way and we both started crying. These days, I spend the day in anticipation of those magical fifteen minutes and sometimes even have my act together enough to have a camera nearby. The tricky thing is that I can get either a picture of him smiling or a picture with his eyes open. This is because, like his father, his eyes disappear into their squinty slits as soon as his cheeks start to squish up. So, so awesome.

News of interest today includes the fact that Kyle and I decided to stop Collin's B6 regimen. And we did not consult the doctor; because sometimes, there's just no point. As the seizures got worse and worse yesterday and we looked back over Collin's health chart (I'll post some other time about Collin's extensive and detailed health spreadsheet - get excited), it seemed clear that the B6 and seizures were related. So we talked to the neurologist about increasing his Topamax but didn't bother to ask him about the B6. And today, Collin had no seizures. As in none. Yesterday he had around 100 all together. And today none. And he didn't retch even once. And I don't mind saying that I felt a little smug about it. As I was standing in an exhausted haze in the bathroom before bedtime, getting ready to realize that I was squirting saline spray in my contact case, I thought, "Ha. We were right."

Saturday, August 8, 2009

For Better and For Worse

Today was hard. Collin seizured it up like we haven't seen since before we started treatment at all. On top of that, something has messed with his stomach this week (I don't know, maybe one of the six meds he's on?!) and, since he can't throw up because of his Nissen wrap, he's retching all the time (imagine the biggest, scariest dry heave you can and you have a good picture of what that's like). Then I was chatting with my friend Caitlyn this evening - a wonderful young lady I've known since she was a precious little two year old in my lap - and we were discussing our summers and I shared with her how it's been hard for me while we've been working to get Collin better. And she replied "Yeah. But are you happy?" I was pierced and baffled. And I realized that I am. I'm happy to be Collin's mom and to be caring for his many needs and playing with him whether he wants to or not. I'm scared out of my mind and broken hearted most of the time, but I'm also happy.

My dear friend Michael got married today to a beautiful woman and listening to their vows got me thinking about the intensity of this paradox Kyle and I are constantly living in. The vow says 'in sickness AND in health', but only 'for better OR for worse.' As though it's an either-or thing. You know, in good times and in bad. Life is full of ups and downs, but one follows the other, right? I guess we weren't prepared for the better and worse to happen at the same time; for the best part of our life to be the most excruciating. But everything is for better and worse right now. My parents came today to visit and take care of Collin, and when Kyle and I got away for a walk on our own, we spent most of the time on the phone with the neurologist and discussing Collin's treatment. We got take-out pizza for a fun Saturday dinner and then sat around the table crying with my parents about the hardships and blessings of our situation. We thank God for providing for us in this situation and we plead for it to stop. We counted Collin's seizures while I was singing him to sleep.

But that's just our life right now. And I wouldn't do it with anyone else.

Friday, August 7, 2009

B6

We were supposed to take the weekend to watch Collin on the B6 and report back Monday on how he's doing. It's hard to say whether or not it's working. On the one hand, he has opened his eyes more than we've seen in weeks and weeks. He has even responded to my voice by opening his eyes and looking for me. But his seizures seem to be getting worse every day. Tonight he had 14 in a row while we were on a walk. This nice man stopped to ask if everything was okay - I guess because we were stopped in the sidewalk with a furrowed brow rubbing Collin's head and counting - so I put on my best fake smile and told him we were fine. Then Collin had another 26 in a row as we were trying to go to bed.

We may be paging the neurologist this weekend.

Wednesday, August 5, 2009

Again

I can't think of a good lead-in to say that Collin has started to have seizures again. They don't look like the spasms he was having before, with the stiff arms and legs and the jackknife movement. He doesn't shake like a 'typical' seizure, either. He just gets very still and starts to breathe in short, hard breaths. The only similarity to the spasms is that his eyes get very wide. Doesn't sound like much, I know, but when you're always on the alert and so desperate to be seizure free, it is - as Kyle perfectly described - crushing.

The neurologist had told us that it would take ten to twelve days without spasms to be considered spasm free. Today was the tenth day.

So, I spent the afternoon on the phone with the neurologist's office and the compounding pharmacy. (The compounding pharmacy is today's MVP, by the way. The B6 suspension was supposed to take until tomorrow to make but after I told them it was for Collin's seizures, they made it in half an hour. I gave everyone a big smooch when I got there.) We decided to move ahead with a B6 regimen and, if it hasn't made a big difference in three days, to start increasing his Topamax. This, I am not looking forward to, since Collin seems to be even less himself on the Topamax than he was on the ACTH.

Also while we were on the phone, I voiced my concern about the side effects of the Clonazepam. Not only does Collin have a grossly dry mouth, a stuffy nose and a phlegmy cough (not a cold - started when he started the meds), but he also wakes up no more than twice a day, no kidding. Sometimes I literally cannot wake him up. But according to the nurse practitioner, that is the lesser of the evils right now and, as long as Collin keeps breathing well and 'rousing' (moving at all) when I bother him, we're going to stick with this medicine until he is seizure free. It's hard to explain, but these days when Collin sleeps like the dead all day are just as hard and stressful as the ones when he was growling nonstop. I guess the common factor is that in both cases, he feels so far away from us.

Tuesday, August 4, 2009

Another Funny Collin Moment

At Collin's last neurologist appointment, the doctor looked at Collin and then at Kyle and then asked if Kyle is part Japanese.

Monday, August 3, 2009

PET Scan results

I got a call from Collin's neurologist early this afternoon and he explained that the PET scan showed a slight abnormality in the left frontal temporal region of the brain. He went back over Collin's MRI's, but couldn't find anything there that would indicate what might have caused the abnormality. The strange thing is that the EEG's all show that the spasms are coming from both sides of the brain. Because the problem seemed to be in one area, the doctor wondered whether Collin might be a good candidate for a brain surgery that targets epilepsy, so he called a colleague at the Cleveland Clinic who is a specialist in these surgeries. They came to the consensus that Collin is not a candidate for the surgery at this time because his problem does not appear to be localized enough and because his spasms seem to be coming under control with the help of drugs. If the seizures come back or stop responding to medication, we would revisit this. In the meanwhile, we are going to move forward with the lumbar puncture and some more bloodwork to cover the last few plausible possibilities of underlying causes for his spasms.

I also discussed with the doctor how sedated Collin has become. He sleeps almost constantly throughout the day and there are many times that I have a really difficult time rousing him at all, much less keeping him awake. We decided to back him down a little bit off of the Clonazepam and see if that helps. If the spasms come back, we'll try something else - possibly a B6 regimen.

On a side note, Kyle and I celebrated our 7 year anniversary today by taking Collin to Qdoba and then to the pool. He has come a long way since the last experience, in which he started to scream the moment his toes touched the water. This time, he sat in our laps on the steps and tolerated the water all the way up to his belly, at which point he stuck out his lip. I've tried to explain to him that being extra cute is not a good tactic for getting people to change their ways, but he's not a good listener yet. Then we cuddled in some lounge chairs and he gave us our anniversary present by opening his eyes all the way and smiling and laughing while we played with his arms and feet. So awesome.

Guidance

Some days, for no discernible reason, are just harder than others. It all feels even more devastating and never ending than normal and we have trouble praying, partially because we feel like we're saying the same things over and over again and partially because we're just so weary. Yesterday, Kyle and I were feeling pretty down and overwhelmed by everything, though nothing had happened to trigger the struggle. I was praying for help recently and found this:

'Why do you say, O Jacob,
and complain, O Israel,
"My way is hidden from the Lord;
my cause is disregarded by my God"?
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not faint.'

Isaiah 40: 27-31

Saturday, August 1, 2009

A Thousand Thanks. Literally.

We got home from Cincinnati tonight and were standing up to our shins in a sea of unpacked belongings when a friend brought us over a delicious dinner of tofu curry. (Thanks Marie!) This got me thinking again, as I do a lot these days, about how many wonderful friends have really stepped into this hard, bewildering time with us and cared for us in whatever way they could. And I became re-overwhelmed by the extent of it.

Consider:
- We have not cooked for ourselves more than a half dozen times since Collin was born. That's over five months, folks.
- During these five months, we've been showered by a steady stream of encouraging emails, texts, cards, and notes from people all over the state and beyond.
- We have been prayed for faithfully by an army of believers.
- My mom took family medical leave and pretty much lived with us for two months when things were at their worst.
- Collin has received such a generous outpouring of gifts that we're going to have to rent a storage unit. (Joking. Sort of.)
- A huge chunk of the help we've received is from people who barely even know us - friends of friends or of family members who just wanted to help and pitched in to ease the burden for us.

Now, I was never really good with writing thank you notes even before our life turned upside down and inside out, so you can imagine how small the chance is now that I will ever get around to writing notes of thanks, especially considering the enormity of the task. So, I just wanted to take a moment to thank everyone in this very small way for bearing some of our load - for giving generously and loving warmly and reaching out to us in a situation where none of us really knows what to say or do.

Thank you.