Monday, December 28, 2009

Jackpot

Merry Christmas and Happy New Year. You get two videos today.

First off, Collin has become significantly more vocal in the past couple of weeks. As with most things, we're not sure what brought the change about, but we sure are enjoying it. Here is Collin getting psyched up for his swim this morning while the therapy pool was filling up.

Jabber Mouth from Annie Kratzsch on Vimeo.


And here we have the little miracle that is water therapy. Collin has quickly gotten used to his WaterWayBabies therapy pool and smiled as soon as we put him in it tonight. He touches the bottom with his toes, pushes off the side, uses his arms, and sometimes even kicks. He's like a super cute, pudgy Esther Williams in a swim diaper. Another really interesting part about the pool is how Collin is different when he's not even swimming. Kyle and I both feel like he has kept his eyes open much more and seems more interactive. And the best part is that the exertion of swimming KNOCKS HIM OUT. He has slept all the way through the night both days since we got the pool. If I had known that was all we needed to cure our sleep woes, I would have bought one ages ago.

Just Keep Swimming from Annie Kratzsch on Vimeo.

Sunday, December 27, 2009

Jingle Bells, Collin Smells

Collin's first Christmas started off with a bang. For some unknown reason, Kyle and I thought it would be a good idea to change Collin's g-tube on Christmas Eve. We've got it down to a science and it takes about 45 seconds, so we were going to just give him a nice clean button for Christmas. No big deal. Except that when we put the new one in, we couldn't pull anything out of his stomach, which is how you test to make sure the tube is properly placed. In fact, we couldn't even pull the plunger on the syringe at all; it was like it was pulling a vacuum. Needless to say, this is not supposed to happen and it made us nervous, so we took the new button out and put the old one back in so we could figure out what was going on. Except that now the old one was doing the same thing. At this point, I called the pediatric surgeon on call at Children's Hospital and he told us to come down to the ER. So, we turned off the stove and the oven that was finishing my Christmas cooking, pushed aside the last minute gift wrapping, and packed up for an afternoon of X-rays and examinations in the ER. They basically ended up figuring out that the tube was properly placed and said that they had no idea why we had experienced that problem with the syringe (which they had witnessed, as well), because that's not supposed to happen. Hm. Thanks. We gave Collin a full feeding at the hospital so he could be observed and he did fine, so we were discharged. We were all unbathed and disheveled, but we swung by our house to pick up whatever was ready and headed over to Christmas Eve dinner with our family. We were so glad to have made it, since we were afraid Collin might be headed for surgery, and thoroughly enjoyed the evening even though we were utterly exhausted from the stress and anxiety.

Christmas morning brought Collin's first gift from his Mom and Dad, which was significantly bigger than him. He almost had a joy heart attack at the sound of the paper being torn off, but was pretty unimpressed with everything else about the experience. We had ordered him a water therapy pool from WaterWayBabies, and we could hardly wait to try it out.

After a fun holiday weekend on the family farm, we came home and set up the pool. This is just a taste of the cuteness that ensued. Video is to follow.

Monday, December 21, 2009

Future and Now

We are still seizure free, folks. That makes almost a full week. And boy is it great. There's nothing to make you appreciate your 'normal' life like hundreds of scary seizures.

Collin took advantage of his downtime this week to grow another 3/4 of an inch in ten days. I am not even kidding. He's right up on the growth chart again (hugging the bottom line, but still on it!) and sometimes I look at Kyle holding him and wonder who that little boy is.

I have to be honest and say that this brings up mixed feelings for me. It's wonderful to see Collin growing and healthy. I think of how small and frail he was at the beginning and feel so thankful for his robustness. But it's just not easy to have a ten month old who is starting to look like a big boy but still can't hold his head up like a six week old can. Who can't roll over and can't sit up and can't eat and can't hold anything in his hands. It makes my mind want to run off into the future and stick its thumbs in its ears and wiggle its finger and stick out its tongue at me and shout mean and scary things that are probably not even true. And I have to reach out and grab my mind by the arm and give it my 'look' and sit it in timeout until it can play nicely. When time is up, we have a little talk about why it got put in timeout and I explain to my mind that it is not allowed in the future because it doesn't belong there - Future is not a safe place because we can't see it or understand it. We have to stay here in Now and pay close attention to all of the awesome things - like Collin's new sounds and the way he likes to touch my face recently. And we have to stand here in the hard things and not try to run away (because, really, there's no place to go anyway) and feel how it feels to have awesome things and hard things at the same time. That way, when Future gets here, it won't be scary anymore because it will be Now and we will have lots of practice with living in all kinds of Now.

Thursday, December 17, 2009

Who Wants to See Something Awesome?

Smarty from Annie Kratzsch on Vimeo.


This contraption is made up of a fantastic cheap light-up aquarium from Walgreens and this amazing thing that can make anything switch operated in order for Collin to learn cause and effect (the red circle under his hand is the switch). We hooked the aquarium to the switch, used his favorite carousel toy to create the necessary excitement for him to hit the switch, and presto bango, you have learning at it's absolute best. He got faster and faster after this and we had to switch to having him activate it with his feet to keep him interested.

Of course, he would prefer to TELL the aquarium to turn on rather than actually hit the switch. Not sure where he got that trait.

No seizures again today. We're starting to take deep breaths periodically.

A Message From Collin

A Message From Collin from Annie Kratzsch on Vimeo.

Wednesday, December 16, 2009

So Far So Good

After another long night of watching Collin for seizures, it looks like we're headed in the right direction. We haven't seen any seizures since I posted last night. He's pretty sedated and has a gross cough from the congestion generated by the clonazepam, but we really didn't have a choice and had to stop the seizures. If they continue to stay away, hopefully we'll be able to fine tune some doses to let him get back to himself soon. But I don't want to get ahead of myself. Right now, seizure control is our number one goal.

Tuesday, December 15, 2009

The Plan

Part of what I like about Collin's neurologist is that we always leave with a plan of action that makes me feel involved and empowered. After a nearly 3 hour appointment, only half of which was waiting, we were armed with a better understanding of Collin's seizures, his meds, what we could do on our own regarding the two, and what we would do in the event that these actions didn't work.

Obviously, we decided not to be admitted to the hospital. The neurologist felt totally comfortable with our ability to manage the situation at home, particularly since he is on call right now and we would be able to contact him within minutes at any point. We also discussed a plan for pursuing a better understanding of what Collin's underlying condition might be. This includes some of the same tests mentioned by the geneticist yesterday (MRI, muscle biopsy), and a few others (ERG and VEP to learn about Collin's vision, another blood test, etc.).

A very intriguing option the doctor mentioned was the ketogenic diet. We had discussed this in the past, but we didn't know much about it and I was anxious for Collin to stay on breast milk as long as possible. But between the doctor's comments and my own research this evening, it seems like a viable and potentially exciting option. The only drawback is that you have to be admitted to the hospital for several days in order to get it started, but we're hoping to combine that with our upcoming trip to Cincinnati in order to cut down on individual hospitalizations.

We all got ready for bed early tonight, anticipating a tough transition to sleep at least similar to last night's. While Kyle was upstairs, I took Collin into the den to watch Christmas cartoons and do a little physical therapy. He cooperated surprisingly well, but pooped out pretty quickly. So, I snuggled him close for a few minutes, fully aware that he would probably launch into a seizure soon, but hopeful that he could get a few minutes of sleep before it came. Except that it didn't come. He slept through Charlie Brown Christmas and then through The Snowman. We hadn't even given him any extra medicine. Then Kyle carried him upstairs and changed him and he barely stirred. This makes us really hopeful that the Keppra is starting to work and that we will have some seizure control soon.

Hopeful might be the wrong word, actually. As a means of self-preservation, we try not to be hopeful because it involves too much focus on the future. What I should have said is that it eases some of the crushing weight we're carrying. It makes our present minutes a little easier to breathe in.

EEG

Our EEG was at 10:00 this morning and about 5 minutes into it, Collin started having seizures. Which is good, I guess. At least they have record of it so they can hopefully get some insight into what was going on. After the second seizure, the technician paged Collin's neurologist, who wanted to talk directly to me. He gave me the option of either getting admitted to the hospital or trying to manage things at home - either way, we will be adding yet another medicine to Collin's regimen. Since we have an appointment already scheduled with him at 1:30, I opted to try medicine for a couple of hours then decide how to proceed when we meet this afternoon. I feel torn about what to do. It is so much more comfortable for all three of us when we're at home, which I believe makes treatments go more smoothly, but since the nature of these seizures prevents Collin from sleeping once they start, our hands are also tied at home.

In true Collin fashion, he filled his clothes and his carseat with poop at the hospital, so that's what I'll be taking care of between appointments.

Long Night

After getting the seizures under control again yesterday morning, they came back last night at around 6:30. We tried the usual protocol of meds we've been using, but he was not responding for some reason. We spent the night trying to keep Collin awake while we waited to hear from the neurologist so he wouldn't have more seizures, but between his lack of sleep and the sedating effect of the medicines, he got more and more exhausted and it was a losing battle. At around 9:00, the neurologist approved more clonazepam and called in a prescription for Keppra, an antiseizure drug Collin hasn't tried. Even after two more clonazepam and a full dose of Keppra, however, Collin was seizing every 3-5 minutes. At 11:00, we called the neurologist one final time and were told to do one more dose of Keppra and, if he didn't stop seizing within 30 minutes, go to the hospital. Once again, Collin waited until the last possible minute and with about 15 minutes left until our deadline, he stopped seizing and went to sleep. It was another night of minimal sleep for Kyle and I as we took turns 'sleeping' next to Collin so we could watch for seizures. He made it through the night without any and now we're getting ready for his EEG and neuro appointment, hoping to avoid getting admitted to the hospital.

Our visit with the geneticist yesterday did not really yield any answers. Collin did not 'ring any bells' for the doctor, but he did order some more blood work to rule out a few more possibilities. He also recommended a repeat MRI to see whether Collin's condition is static or progressive, an ultrasound of his kidneys to make sure they're okay, and a muscle biopsy to determine for sure whether he has a mitochondrial disorder. We are planning a trip to Cincinnati Children's Hospital soon for some second opinions, so we will probably just do everything at once at that time.

More to come when we know something.

Monday, December 14, 2009

Update

Collin started having the seizures from the last post again sometime early this morning. We don't know how long he had been having them, because he doesn't make any noise with these, but he was totally exhausted at 5:45, so it might have been a while. We gave him two clonazepam again and they stopped in about 45 minutes. Not sure what this means or where to go from here, but we see the geneticist today, the neurologist tomorrow, and we expect to hear from a pediatric neuroradiologist who is looking at Collin's MRI this week, so hopefully we'll get some kind of answers soon. He is knocked out from the clonazepam, so he won't be sleep deprived for his EEG like they prefer, but too bad. We weren't going to just let him keep seizing so they could catch it on an EEG.

Will post more as we know more. Prayer would be appreciated over these next couple of days.

Sunday, December 13, 2009

Seizures Galore

Collin hasn't been sleeping well recently, so when he woke up out of sorts on Friday, I just assumed it had something to do with that. But then he had a weird spell during his vision therapy that morning. It was like he suddenly went into a deep sleep and then woke up kind of panicky and disoriented. I figured he was overtired, so when therapy was over I snuggled him up for a nap, but he just did not seem to be able to go to sleep. By the time his speech therapist came for feeding therapy, he still hadn't slept and had a similar spell. But then I noticed similarities in his mannerisms between the two - he made an unusual face and his breathing wasn't right and he sat up much straighter than normal. Once, he did it while I had him on my shoulder and lifted his head straight up - something he has never been able to do - and by the next time I saw it, I knew he was having seizures. They were like nothing we had ever seen and I wondered if they had to do with being overtired. So, after therapy I broke out the big guns and let him sleep on me, something I rarely do but that always works. At this point, I realized that every time he started to fall asleep he triggered a seizure. He would slowly get stiff, arching his back and making that strange face, hold it for about ten seconds, and then blink his eyes like he was confused as he came out of it. It was heartbreaking.

So, I called up the neurologist (my speed dial consists of my immediate family and Collin's neurologist) and talked to the nurse practitioner, who advised me to give Collin 1/2 a clonazepam. I did and nothing had changed, so I gave him the other half. After another couple of hours of watching him trying to fall asleep, only to be awakened by a seizure, I called back. At this point, they started talking about bringing us in to the hospital and my stomach turned. She said we would need to "load" him on a medicine (give him a massive dose all at once), maybe even a medicine he hadn't tried before. I pictured all of the poking and prodding, the unwieldy and uncomfortable IV with the arm board, the monitors. I asked for our alternatives and she said we could give him one more half, but that if he hadn't stopped seizing within 45 minutes or an hour, we would need to be admitted. At this point, Kyle and I made a judgment call. We thought about the past doses of medicine Collin has taken and we thought about the kinds of doses they were thinking about giving him in the hospital and we decided to give him a full pill instead of a half.

And then we prayed and prayed and prayed.

And then I started packing for the hospital.

And then the seizures stopped and Collin fell asleep in Kyle's arms.

And then I smiled and cried and spent the night with Collin in bed next to me, waking up every time he moved to make sure it wasn't a seizure.

We haven't seen anything since. Here's my theory: something happened that sent Collin's brain into some kind of a cycle. Every time his brainwaves reached the sleep pattern, he shorted out and started over. I just think we needed to get his brain over whatever threshold had developed so that he could restart a healthy sleep cycle. We will have an EEG early this week and see if anything shows up.

Collin can't figure out what all the fuss is about, though. He was totally normal between the seizures. He would scare the snot out of me and then laugh. And he's been his normal happy self ever since. Just trying to keep us on our toes, I guess. Doesn't want us to get rusty.

Tuesday, December 8, 2009

Laying Low

Apparently, last week's seizure really was a fluke, because we haven't seen anything since and Collin has been his normal happy self. (It is so interesting to be able to write that, considering he has really only been awake and happy for two out of the last six months.) We have even moved forward with his medicine weans. He is about halfway through the first stage of his Sabril wean and tomorrow marks the LAST stage of his clonazepam wean. That's right! He started on 4 pills a day and is down to only 1/2 a pill at night.

We've been laying low for the past few days since I picked up whatever Collin had last weekend and have felt like an achy bag of phlegm since Saturday. The good thing about being sick is that it gives you a legitimate excuse to stay home and be lazy. Collin and I have done a heck of a lot of snuggling and playing these last few days and, thanks to Collin's creative influence, have used what little energy we have to Christmasify our house like never before.

Thursday, December 3, 2009

30

Tuesday was my 30th birthday. After getting home from dinner with friends, Collin had a seizure that was unlike any we had seen before. I won't try to describe all the ways in which that was supremely difficult for me. Since then, we have consulted with his pediatrician and neurologist, who agree that the seizure was likely due to a lowered seizure threshold from his fever this weekend, but we didn't know that Tuesday night and I went to sleep crying. This was not something I expected for my 30th birthday and it spurred me to compile this list:

Things I Didn't Expect For My 30th Birthday (in no particular order):
1. Being on antidepressants
2. Being this much more in love with Kyle
3. Having a son with a seizure disorder and undiagnosed neurological issues.
4. Being addicted to crochet like an old granny.
5. Knowing more about g-tubes, meds, and seizures than many medical professionals.
6. Anxiously awaiting approval from Medicaid.
7. Not being able to answer my birthday calls because I'm up to my elbows in Collin poop.
8. Being this open to accepting help when we need it.
9. Feeling simultaneously so fierce and helpless as a mother.
10. Still getting pimples.
11. Missing Collin when I go to the grocery store.
12. Being so honest about such personal things.

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.

Thursday, October 29, 2009

Growing Boy

I can't remember if I mentioned this, but Collin grew almost three quarters of an inch in the past two weeks. The nutritionist didn't believe it at first and we had to remeasure him, but it was true. This is super exciting considering he didn't grow at all for two months while on prednisone. The down side is that we grow while we sleep, so he is spending his free time plummeting into ridiculously deep sleeps for most of the afternoon and evening (which is only partially due to the Clonazepam he takes at 2:00). I literally CAN NOT wake him up from these naps. When I was ready for him to eat this afternoon, I was banging a spoon on a dish, pressing a vibrating therapy toy on his cheek, and doing an impromptu cheer, but he just sighed and the food fell off of his lip. There aren't many people quite as skilled as Collin at ignoring me, and he's only eight months old.

Wednesday, October 28, 2009

Sabril: Week 3 - OR - Chicken a la Collin

Tuesday was a big enough day that it took today to recover enough that I could write about it. Nothing is wrong! (That's what I have to say immediately every time I call my family at an undesignated time now. Simultaneously sad and funny.) It was just wild in a way-too-many-things-for-one-day kind of way.

First, we went to see Dr. Awesome for our neurology checkup. It was a great appointment, per usual. He spent tons of time with us answering each and every one of the questions on our extensive (and TYPED) list and, though we talked about some tough things (which is sort of the nature of the beast at the neurologist's office), we felt encouraged overall. We have decided to start weaning the Clonazepam, which is very exciting. This is an antiepileptic and sedating drug that Collin has been on since July. It was meant as a backup for his other drugs and to provide some 'wiggle room' during drug transitions; but, now that Sabril is working so well, it's no longer needed. (High five to Sabril.) It will be a slow wean - 6 weeks at least - because it is a habit forming drug, but we're just happy to be on our way. Also because Sabril is working so well (side hug to Sabril), Collin hasn't had a seizure that we've seen in over 3 weeks. Consequently, Dr. Awesome ordered an EEG to see if Collin's brainwaves are starting to normalize yet (stopping the seizures is only half of the goal). So, after our appointment, Collin and I walked over to Children's Hospital, worked our way through the familiar and lengthy Outpatient Registration process, and headed to NeuroDiagnostics to get the test run. While we were waiting, Collin pooped in the chair, which has apparently become a favorite hobby of his. When we finally got all settled in to the clean armchair, with Collin all snuggled up in my arms and my feet propped up and the room so cozy and dark, he and I both fell dead asleep and enjoyed a blissful nap for the duration of the EEG. I joked with the technician that I wouldn't object to an EEG everyday at 3:00. We should get the results tomorrow.

We made it home from the hospital about half an hour before all of Collin's therapists and service coordinator were scheduled to show up for our big six-month plan meeting. When you are in an Early Intervention program (a state-sponsored program that provides help to children under the age of three with developmental delays - what an uncharacteristically brilliant use of taxpayer money!), you set goals for a six-month period of time and when that 'plan' is over, you meet up again to reevaluate the progress that has been made and set your goals for the next six months. It was interesting thinking about our first meeting, when we thought that Collin's only challenge was his difficulty eating without aspirating. We only had a speech therapist to help with the feeding and a family therapist to help us deal with the stress and struggle of our situation; our goals basically covered getting Collin off the g-tube and started breastfeeding. So much has happened since then. With the Infantile Spasms diagnosis, we've had to let go of some goals and dreams and we've struggled constantly against the negative side effects of medicines (cheek smooch to Sabril for not presenting any yet). It could have been a really tough meeting. But I sat there with these six incredible women (we've added a therapist or two since the beginning!) who all love Collin so much and listened to them sharing stories with each other about their sessions with him and how excited they are about little things he's doing and I just glowed inside. When I started my own therapy back in April, my killer therapist shared with me her own experiences in the Early Intervention program with her son and expressed the way in which the therapists provide not just strategies, but also support and empowerment. I had no clue what she was talking about at the time, but as we sat around the table drinking tea and laughing and dreaming about what Collin could be doing in six months, it really hit home.

After the meeting, I woke Collin up from his nap to feed him his midday meal. We are currently feeding him pureed meat twice a day to boost his protein intake and have been having a little trouble pushing it through the tube no matter how much we dilute it or how hard we push. I mixed some almost-liquified chicken in with his breastmilk and was talking to him sweetly while I pushed firmly on the feeding syringe. Apparently, the syringe was not seated in the extension tube well enough to withstand my brute strength, because the tube exploded from the end of the syringe and pureed chicken and breastmilk came rocketing out. I mean, think fire hose. Of chunky, funky milk. It sprayed mostly on the side of Collin's face, but it hit with such force that it ricocheted everywhere and splattered half of the couch, all of Collin's Boppy, every inch of his body, all of my clothes and my hair and face. I had pushed most of the syringe out before I even knew what had happened. Collin looked at me through the one lens of his glasses that wasn't totally covered with smelly, sticky chickenmilk and I could swear he rolled his eyes. I gave him a stern talk about respecting his mother and then we went upstairs to strip down, scrape off the quickly cementing chickencrud, and take an afternoon bath.

Luckily, we ended the day with a leisurely dinner with dear friends and time to decompress with the help of good food, good listeners, and some great laughs - a surefire combination. Now we're looking forward to a few days of calm. Fingers crossed.

Monday, October 26, 2009

Exile

On Sunday evenings, my sister stays with Collin so that Kyle and I can go to church. We sit in the very back to avoid germs and leave during communion for the same reason and to get home for Collin's lengthy bedtime routine, but it's good for us to go. Yesterday, we studied Jeremiah 29 - a letter from a prophet to the people of God after they had been defeated in battle and taken from their homes to live in enemy territory. The message was about how God told them how to live their lives while they were in exile: settle down, build a life, make a difference with the little things. The speaker applied this to our presence as a church in our city, but I found myself thinking about how it is also appropriate in a more figurative sense to parents like me and Kyle. We're in exile - somewhere we do not want to be and feel like we don't belong. We long for the 'home' that we had before our lives turned upside down and it's tempting to put life on hold and get used to living in survival mode. But a major way God redeems our situation is through the same means he did for the Israelites - we settle down here in this 'land' of confusion and struggle and weariness and start to build a new life. We use the beauty and power of the 'little' graces of everyday life to make a difference in our own family and, consequently, in those who surround us. So, we find the things we can do in our situation and we claim them and enjoy them - we take fall walks in the park and watch Halloween cartoons at home and grab moments to read and crochet and cook and write to friends. And what happens is that, while we're clinging to God's promises to make everything right one day and lead us home, we take his advice and start putting down little roots and the unthinkable happens: we find joy and healing in the very place that threw it all into question. Now that's redemption.

Saturday, October 24, 2009

Experts in the Field

Collin started retching again a few days ago and, though we assumed it had to do with the med transition, it had not improved as the days went by. Today, we found some yellowish liquid in his mouth after a retch, making us think that all of his heaving is stressing his Nissen wrap and causing it to start to 'slip' (the term for when the loop they made with the stomach muscle around the bottom of the esophagus starts to come loose). Luckily, Collin knows how to protect his airway now, so it's no longer a safety issue, but we would still rather the Nissen loosen from a natural progression of his growth rather than from the stress of trying to throw up, so we got serious about trying to figure out what was upsetting his stomach so much.

We had already been experimenting with the flow rate of his feeds for several days and venting his tummy before and after eating (we hook an extension with an empty syringe to his g-tube button to let air or excess fluid out), but nothing seemed to make a difference. He was retching up to an hour after eating and nothing really came into the syringe, so it wasn't because of being over full or gassy. Kyle mentioned that maybe it was the Sabril, but I had a feeling that that wasn't the case because he seemed to have done so well with it overall and when Topamax upset his tummy, it was different than this in some way that I can't explain other than to say that my Momma-Spidey-Sense can make the distinction. I just felt like the recent retching had something to do with his digestion. We thought through everything he has eaten (which isn't much, since we still haven't really had a chance to put him back on solids since his fever last week), his supplements, and nothing made sense.

It had been in the back of my mind that coming off of the Zantac so fast could have caused some trouble for him. After blocking stomach acid for so long, it seems like that could be tough on a little tummy. And when I spoke to the pharmacist about taking Zantac for my hives last week, he mentioned that the only thing I would have to worry about was a possible upset stomach. We always ask the doctors about how to 'go on' and 'come off' a drug, and most of the time they wave off our question with an assurance that it would make no difference. But we've had too many experiences with meds, vitamins, and even tiny amounts of formula causing a shock to Collin's system. I still think it was a dose of Poly-Vi-Sol that sent us to the hospital the second time. So, I talked to Kyle and did some reading today and, sure enough, I found some evidence that coming off Zantac too fast after a long course of it can cause rebound symptoms. We put together a weaning schedule right away, gave him a dose with some Pedialyte to give him extra fluids to dilute his stomach acids, and he hasn't retched since.

My mom always contends that there should be some kind of honorary medical title for parents with situations like ours, and I have to say that when I realized we had figured it out today, I felt like Doctors Kratzsch and Kratzsch, world renown experts in Collinology.

Collin wasn't quite as excited as we were and slept all the way through our celebratory walk and viewing of It's the Great Pumpkin Charlie Brown. Either he was enjoying his lack of killer heartburn or is launching into a colossal growth spurt after two months of not growing on prednisone. Maybe next week he will look less like the great pumpkin himself.

Friday, October 23, 2009

Halloween Costume #2


With this Harry Potter, Lord Voldemort would die from cuteness overload.

Thursday, October 22, 2009

Halloween Kick-Off

Commentary from Annie Kratzsch on Vimeo.

Here, Collin shares his thoughts on his first trick-or-treating experience. He wouldn't share any of that candy with me even though he's not allowed to eat it. He said if he can't have it, no one can.

Wednesday, October 21, 2009

Sabril: Week 2 -OR- The Kratzsch Infirmary

Well, between Collin's first fever, my first bout of hives, the return of Collin's retching, and me having to baby my stitches from last week's surgery, it was quite a week. I'd be lying if I said it wasn't hard and discouraging. Besides feeling bad, we had to cut way back on Collin's daily therapies, which is nice in that it gives me a break, but tough because it feels important to do those things and consequently feels like a setback when we don't.

Today was the first day this week that Collin felt good AND I wasn't losing my mind from itching so we celebrated by playing and snuggling most of the day. In the evening, our good friends the Popps came in town and we took our boys for their first Trick-or-Treating experience at the Louisville Zoo. Interestingly, Collin's favorite part of the whole experience was the area that had a disco ball and blaring Bee Gees music.

And also - you have to come close, so I can whisper this part - no seizures this week.

Tuesday, October 20, 2009

New Normal

There's nothing like going straight from your baby's first fever to a mysterious case of torturous hives to make you appreciate the relative calm of your 'normal' life. After another night of next to no sleep due to an impressive array of nasty symptoms, I went to CVS at 6:00 this morning for a last ditch attempt at relief. Sometime in the wee hours of the night, I remembered something my doctor had mentioned about using Zantac along with Benadryl to treat hives and researched it. I was willing to try anything and I'm glad I did, because I started feeling relief almost immediately and slept for three hours.

It's amazing how different the world seemed when I woke up semi-rested and nearly hive free. I realized how much I had missed my normal routine with Collin these past few days of misery. I had hardly touched him at all and hadn't participated in many of his therapies or med preparations. It felt so sweet to sit and talk to him during his tube feed and help him with some physical and vision therapy before his nap. It's kind of strange to find comfort in drawing up medicines.

Unfortunately, the calm didn't last long and Collin started retching at his 6:00 pm feeding. It happened again at the 10:00 and we have no idea what could be causing it. With all of the medicine changes and virus symptoms, who knows. So we just slowed the rate down on his feeding pump in the hope that things will work themselves out.

Sunday, October 18, 2009

You Have Got to Be Kidding Me

So, I was thinking this morning. I thought to myself, 'Self, I don't think we have quite enough going on right now. I don't think our life has reached quite the point of craziness that I would like to see. What should we do about that?' Well, I tapped my foot and a stroked my chin and then held up my crooked little finger and cried, 'I've got it! Hives! Huge, gross, scary-looking hives! Hives all over my body! Hives with no discernible cause! Hives that don't respond to antihistamines! That's the ticket!' 'Self,' I replied with a smile, 'you're a genius.'

Then I felt a little itch on my wrist. There were little bumps like tiny little mosquito bites. The itching steadily got worse and started to throb and in the time it took me to say, "Kyle! Look at these cute little hives!" my whole forearm was a giant hive. In an hour, it started to disappear and I thought the fun was over, but it soon reappeared on my upper arm - and stomach and back and legs and face. (Kyle gave me a sad look when they got up my neck to my cheek. 'It looks like California on your face,' he said.)

Luckily, it's Sunday and Kyle is home to take care of Collin, because I've spent the whole day trying not to completely lose my mind from the itching by slathering various creams, using cold compresses, and taking oatmeal baths (except that I can't put my left arm in the bath because I still have stitches from the SURGERY I JUST HAD LAST WEEK). I have NO idea what I'm reacting to, as I haven't used or eaten anything different recently. Hopefully, it works itself out in short order, because we have a week full of therapies and appointments ahead of us and I don't get time off for hives.

Saturday, October 17, 2009

Not Flu

According to the pediatrician, Collin has a flu-like virus that is not the flu. This case of Not Flu caused his temperature to spike up near 104 again last night, but we were able to get it down to normal by the middle of the night and it's been there ever since. He's a little out of sorts and still isn't opening his eyes, but seems okay other than that. We'll keep giving him extra fluids and keep tylenol in his system for another 24 hours and then see where we stand. If the fever isn't gone by Monday, we'll need to take him back in since it's dangerous for him to have a fever that long. Other than that, we all plan on getting lots of rest and taking care of ourselves so we don't end up with the Not Flu too.

Friday, October 16, 2009

Fever All Through the Night

Yesterday, Collin and I ran a couple of errands in the afternoon. Collin was happy as could be, but I suddenly started to feel like I was coming down with something, so we headed home. When we got there, I noticed that his cheeks seemed really flushed, so I unbundled him. When his face stayed red, I took his temperature and it was 101. I choked on my heart. First of all, it's just disconcerting the first time your baby has a fever. But add to that the fact that Collin is coming off of a massive regimen of prednisone, which means that he has pretty much no immune system to protect him against viruses or bacteria. He is also still very low tone, meaning that if he were to get a lot of chest congestion, he wouldn't be able to manage it. These two things add up to a probable stay in the hospital if he were to come down with the flu of any kind. PLUS the fact that he has seizures, which makes any fever more dangerous.

After talking to the neurologist and pediatrician, we decided to start him on Tylenol and just watch him. As soon as the offices closed, his temperature shot up to almost 104. I called around to immediate care centers, but no one would see him because of his age and medical conditions. So it was either Children's Hospital or nothing. We opted for home. I broke out the Dr. Sears baby book, we stripped him down, and started pumping the fluids (one of the perks of having a g-tube baby). By 8:30, we had it down to under 100 and decided to break up the night between the two of us and check on him every hour, since we couldn't risk a sudden spike. Kyle kept watch until two and I took over at three. The temp stayed under 101 most of the night and Collin slept pretty peacefully.

Today we'll be heading to the pediatrician to figure out what is causing the fever and to make sure he doesn't have any infection, since he wouldn't be able to fight it off at all. We can't get in until this afternoon, so we'll be maintaining the fluid and tylenol regimen until then and keeping a close eye on things. I'm not looking forward to going to sit in that swine flu-ridden waiting room. I'll just cover Collin's carseat with a blanket. And maybe wear a mask.

The interesting thing about all of this is that my symptoms that brought us home in the first place went away as soon as Collin's fever started to go down. This crazy mama voodoo has happened before.

Wednesday, October 14, 2009

Sabril: Week 1 -OR- Happy Little Snot

So, we've been on Sabril for a week now and off of Prednisone for three of those days. Because we're off Prednisone, we're also off Zantac and will soon be off calcium. If Sabril works, we will also come off clonazepam. Please oh please.

We have not seen any seizures since starting the Sabril on Tuesday, but we like to say that in a whisper so that Collin doesn't hear us and we try not to think it too loudly either.

The biggest change we've seen is that Collin is happy. He's still a little on the agitated side, but he spends an inordinate amount of time smiling and squealing. He responds to sounds, shakes, changes in light, and touch. He is exploring textures with his fingers and just seems generally more aware of what's going on around him. He's been up more in the night, but nothing horribly disrupting. We will be starting our monthly ophthalmologist appointments in a few weeks to keep a close watch on Collin's retinas to make sure the drug isn't doing damage to his eyes. Since his visual response is so delayed, the only way we'll be able to tell is to actually look inside his squinty little eyeballs. As soon as we see any damage, we'll be stopping the medicine.

Also this week, as Collin's facial tissues slowly started to shrink back toward normal, all of the snot that has apparently been lodged in his head (not sure why - maybe another side effect? - he hasn't acted sick and hasn't had a fever) broke free and coursed down his face. This resulted in dozens of moments like the one captured here, several of which occurred without the availability of anything even resembling a tissue and none of which bothered Collin in the least.

Sunday, October 11, 2009

Breakfast/Therapy

Cereal from Annie Kratzsch on Vimeo.

I've discovered a good way to persuade Collin to do some neck strengthening exercises. This works with cereal, bananas, etc. Or really even just the spoon with nothing on it.

Thursday, October 8, 2009

Yay Friday

It's been a long week, people. We had an extra-crazy Tuesday and Wednesday with three therapies and a two-part occupational therapy evaluation. The evaluation went really well. I love his occupational therapist and I think she is going to be wonderful with Collin. She adores him, too, which shows her excellent judgment.

The Sabril came via FedEx as promised Tuesday morning and we started administering it that afternoon. It seems like it has konked him out for a few hours after taking it (which resulted in a night of not much sleep last night), so we're adjusting the timing of the dose to see if it helps. He is extremely grouchy, which I kind of expected. Med transitions are hard on him in general, plus the fact that we're weaning the prednisone pretty quickly, which can cause headaches. We're trying to give him some leeway and extra snuggles while still helping him stick to his schedule as much as possible. We got a couple of good smiles tonight, which was good medicine for everyone.

In other news, I had outpatient surgery today to have some places on my left arm removed and biopsied. It seemed like a ridiculous ordeal to me just to have four little incisions - I had to put on a hospital gown, get scrubbed down, and the whole nine yards - but it had to be done and I'm glad it's over. My parents came for my mom's fall break and are taking excellent care of both me and Collin while I can't use my arm. I'm trying not to milk the situation too much. Sort of.

Also, our camera batteries died this week and I just got around to remedying that situation, so pictures and/or video will follow soon. I think his face might be deflating a bit, which is nice. He's looking more like baby and less like a squinty-eyed Cabbage Patch Kid.

Monday, October 5, 2009

Sabril, My Hero

So, I got a call this morning from the Sabril call center (Sabril = Vigabatrin). I find it interesting that a drug that was only just approved by the FDA already has a call center set up in the US. But boy am I glad they do. I talked to Claire and she is now my friend. She was ultra professional and helpful and informed me that she received our paperwork this morning and that they would be sending out a free Sabril start kit while they work out the details with our insurance company, ophthalmologist, pharmacy, etc. She is sending it via FedEx and it will be here tomorrow morning before 10:30 am. I think I must have sounded a little confused when she was so speedy and accommodating, because she had to repeat that part. She kept using phrases like, "Would you prefer this or this?" and "I'll be taking care of all of that for you." I almost told her I loved her as we hung up, but figured I'd save that for our next conversation.

Friday, October 2, 2009

Don't Make Us Come Down There

Unfortunately, I was right on the money about the marathon phone day. All I wanted to know today was when our Vigabatrin will be in and what we should do in the meanwhile. I started calling the minute the office opened this morning and was told by the woman who answered the phone that I would hear back from someone within an hour. When I hadn't heard back in THREE hours, I called again, only to be cut off by the person I was talking to so she could tell me that the nurse practitioner was getting ready to call me in a few minutes. When I hadn't heard back an HOUR after that, I called again, but the phones were turned off for lunch. Finally, at 2:00, someone answered the phone. As I explained my situation and my experience thus far with a mix of firmness and courtesy, she had the nerve to interrupt and tell me that they didn't usually give people a window in which to expect a call back. As though that excused the fact that no one followed through. I thought about asking her if that struck her as problematic in any way - that, when your child is having scary seizures, there is no way to get in touch with anyone who knows what they're talking about before 4:00 in the afternoon when the office closes; that office workers make promises, apparently unaware of any supposed office policies; that they have created a rock solid barrier of indifference to keep parents in need from physicians who can help. Instead, I took a deep breath and said that I wanted to speak to someone right away.

I was put through to one of Dr. Awesome's colleagues, who was supremely unhelpful. He basically told me to go back up on the prednisone and call back next week. When I tried to get information about the Vigabatrin, he claimed that he just couldn't give me an answer and that hopefully they would have some information for me next week. I explained that we had completed all the paperwork two weeks ago and asked who I could talk to who would know the answer, but he would not be moved.

So, I called Kyle. At this point, we became the Supremely Effective Kratzsch Good Cop Bad Cop Team. Kyle built on my dogged good cop nagging and slammed them with his scary voice and grown-up tone. I hate to say it, guys, but I think it also had to do with him being a man. I think these people are used to giving moms the run around. Within half an hour, I got a call from the physician's assistant updating me on the situation and how she was fast tracking it. Five minutes later, the nurse practitioner called and said that if I could come down and sign one more form, she would walk it over to the hospital herself to finish it up and fax it in. I threw Collin in the car, and fifteen minutes later, the Vigabatrin paperwork was done and submitted. We should hear something by Monday. In the meanwhile, we will stop the wean, slightly increase his dose, and just watch to see how he does.

Collin is fine, other than being a grouch face from the prednisone wean. He was extremely sleepy all morning from the seizures, but had some happy time this afternoon. These days are a lot harder on us than him, I think.

Rough Night

A few hours after my cutesy little post last night, Collin woke us up having seizures. Some were similar to the spasms he's had all along and some were different - longer and with shaking. They made him cry. It had been over a week since we had seen any seizures at all - a timeframe that coincided with starting the B6. I had just started to let myself believe that maybe Collin really did just have a B6 deficiency and we would finally have an answer and a treatment. I didn't get much in the way of sleep.

So, today will be one of those marathon phone call days with the neurologist's office. Dr. Awesome is currently out of the country for two weeks, so we won't be able to rely on his man-of-action-powers. The next medicine we're trying was just made available in the U.S. last month and the paperwork is a long process, but we've been working on it for two weeks. I don't know how long it will take to get it or what we will do in the meanwhile in terms of controlling the seizures.

One thing we will do is focus on Collin. When I get especially anxious or discouraged about our situation, Kyle will hold Collin out to me and say 'Does this look like crisis?' I can think of a lot of things to say back - that that's what makes it so scary, that our whole life feels like a crisis sometimes right now - but usually I just take our son and then take a deep breath.

Thursday, October 1, 2009

Shorty

Apparently one of the side effects of prednisone and other steroids, apart from causing weight gain, is that it inhibits growth. Or, in Collin's case, stops it altogether. He has not grown at all in almost 2 months now. Lengthwise, that is. He's not even on the charts for length anymore, though he is in the 95th percentile of weight for height - meaning that only 5 percent of all babies his length are fatter than him. This is where I make a half-sad-half-amused face. I don't think they have an emoticon for that.

The result (besides his nutritionist keeping a super tight rein on his calories) is that we have to put him in 9 month clothes because we can't snap the 6 month clothes around his belly and legs. Unfortunately, 9 month clothes are much too long, so his sleeves and pant legs are rolled up twice. We have also had to temporarily abandon cloth diapers because his legs are so fat that, with the extra bulk, he can't kick at all. But he does hold the baby home run record.

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.