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.