Tuesday, March 30, 2010

Movin' On Up

I finally heard back from the dietician this morning and we got the all-clear to move from a 3:1 to a 3.5:1 ratio. This means that a greater percentage of Collin's daily intake will be comprised of fat, which should increase the number of ketones in his blood and brain. The hope is that this will improve seizure control and maybe even prevent breakthroughs for things like teething (he actually has 4 teeth breaking skin at the same time right now) and other stresses.

The change involves using a little less ketocal powder when I mix Collin's formula and instead adding some unprocessed coconut oil. We're going to give him the new ratio at every other feed for a day or so to reduce side effects from the change, but are still hoping to see some results soon, because we (especially Collin) are ready to kick these seizures and get back to 'normal' life.

Monday, March 29, 2010

What We Don't Know

It's at this point that my memories of last year get a little fuzzy. This was the day of the proverbial last straw that sent me into weeks of not eating, not talking, shuffling around hunched up with fear. I do remember the feeling of terrified bewilderment those days in the hospital with Collin, knowing that something was very wrong, but not knowing what it was. And I just can't help but wonder if things would have been different if I had been a little more educated about postpartum depression. The only reference point I had, and I think this is the same for a lot of us, was the highly-publicized images of the sickest of the sick -- women who did the unthinkable. That certainly wasn't me. I was hurting and barely functioning and not myself, but I was not one of those women on TV. So what the heck WAS I?I was lucky enough to have a fiercely supportive husband, a midwife with the right connection, and an appointment with a specialized women's psychiatrist within three days of the onset of my condition. So, even though I needed my mom to come take care of Collin and I had weeks and months to go, I was at least headed in the right direction from the beginning.

But what about those who aren't so lucky? How are they supposed to figure out what's going on? You find the obligatory PPD posters in the pediatrician's office, but even when I knew what was going on with me and tried to be honest and explain my struggle to Collin's pediatricians in an effort to get their support, I just got an uncomfortable smile, avoidance of eye contact, and never another word or follow up.

There IS some good information out there now on postpartum depression, but as far as I know, there is very little if any information on mothers of babies who are sick or otherwise challenged. Ours is a strange morph between postpartum depression and acute or post traumatic stress disorder and it can't be fully described by either. There is a section in some videos and books that reference "Postpartum Post Traumatic Stress Disorder", but they usually just state that there is not yet enough research in this area. So, pardon my saying so, Medical Community, but GET ON IT.

Sunday, March 28, 2010

Greetings from SeizureLand

After over 3 weeks with no seizures, Collin was extraordinarily sleepy Wednesday, which I figured had to do with his 3+ teeth coming in at the same time and possibly something upsetting his tummy. Then around 6:00 that evening, he started having his same tonic seizures and has been having them ever since.

We're in an interesting place in terms of determining how to treat these seizures. In the past, we would have loaded him up on clonazepam until they stopped. Ever since our last hospital stay in which Collin was unresponsive due to what we think was too much clonazepam, we're more reluctant to do that. Plus, they do seem different. Rather than seizing more often and closer together as time goes on, he rarely seizes sooner than 10 to 15 minutes after another seizure and sometimes just stops on his own and goes to sleep. He seems to be doing fairly well throughout the night. This is a sign to us that ketogenic diet is definitely having an effect. So, up to this point, we have continued our Keppra wean, kept the clonazepam at the same level, and called the ketogenic dietician about tweaking his diet for more seizure control. We should hear from her shortly.

I was talking to my sister Wednesday right after the seizures started and I told her that I had to find some way to cope with seizures that didn't make it feel like the end of the world again every time. It's just not sustainable.

So, I guess that's kind of what we've been trying to do over these past few days. We're still not really going out much because it's just too hard on us for Collin to have these seizures around other people, but we did venture a brief foray to the farmer's market yesterday morning and have made it out for a walk or two. We made pizzas and watched Lost and did some things around the house and yard. We took turns getting out of the house and getting some exercise. Something about those little ordinary things sort of tacked us to reality. It kept us from getting sucked down into the mire of fear and confusion that comes with watching your child endure something you have no power over.

I'm certainly not saying we have it all figured out. I can feel my body tensing whenever Collin starts to fall asleep (he only seizes when he's falling asleep, which is pretty often when he's seizing a lot, because it makes him so tired), we have to regroup and calm down fairly regularly, and we've gone back and forth dozens of times on what course of action to take with the meds. But at least we've made a healthy step in the right direction.

Monday, March 22, 2010

Weaner

This weekend marked the end of two year-long eras for me as I happened to end two weans on the same night. First, I finished my 3-month-long wean from Lexapro, which I started around this time last year when my brain broke the first time I thought I was watching Collin die. I was scared to death to start an SSRI -- who am I kidding, I was terrified of everything at that point -- but I am SO GLAD I had the courage to take them anyway so I had a chance to heal and get back to life with my new family. I would gladly take them the rest of my life if it turned out that I needed them, but the wean went very smoothly and I still feel like myself. Which is to say that I have lots of hard moments and days, because it would be weird if I didn't. I've had a few more of these the past couple of days, but it has nothing to do with the wean. My friend Cristina, for whom March is also a very hard time owing to crushing, intolerable news about her son, wrote recently about how it's like your subconscious remembers that this is the time of year when the unthinkable happened and it manifests itself in your physical and emotional state. I have certainly been more tender and tired recently, but I'm just trying to take it a little easy on myself when I can.

The second wean I finished this weekend was from breastfeeding/pumping. I had continued pumping for a couple of weeks after Collin started the ketogenic diet while we made sure he didn't have any serious adverse reactions. When he didn't and we decided to commit to the diet for 3 months before making the call on whether to stick with it long term, I realized that even if we quit for some reason at 3 months, Collin would be past the point of needing breast milk. So, I started backing off and sticking everything in the freezer. At first, it was so nice to get back so much time, but I also felt sad not only about losing that one extra bond between me and Collin, but also just for the place pumping occupied in my day. It was a good way to wake up and to wind down for bed. I got tons of writing and reading and thinking done during those hours and not having them anymore is going to take some getting used to.

As a person who likes cycles and significance and completion, it feels fitting to me that both of these important things ended around the one year mark of our odyssey with Collin; I say 'odyssey', because 'journey' doesn't seem like quite a big enough word anymore.

Friday, March 19, 2010

Impeccable Timing

Today was the anniversary of bringing Collin home from the hospital and, as you know, Collin knows how to celebrate a special occasion. So, in honor of our special day...

You might want to sit down...

And take a deep breath...

Or have a stiff drink...

COLLIN LAUGHED. FOR THE FIRST TIME. EVER.

He is a happy guy and we get smiles and even squeals like nobody's business, but one of my secret burning desires has been to hear him really laugh. It's a big developmental step, but screw that - I heard my son laugh.

I'm sad to say that I didn't get this video until the best of the action was over. I was so out of my head that I missed the best little belly laughs at the beginning (that's how he got the hiccups -- by laughing so hard -- how awesome is that?). But it's certainly still worth watching.

Dream Come True from Annie Kratzsch on Vimeo.

Wednesday, March 17, 2010

A Day at the Races

Since most of the pre-Kentucky Derby day festivities are regrettably boring, Collin and I are going to liven things up by running this race together in Cincinnati on May 1st.

Tuesday, March 16, 2010

Ketogenic Diet Follow-Up

We trekked up to Cincinnati today for our neurology/ketogenic diet follow-up. It was my first time going to Cincinnati Children's Hospital by myself (Collin's like, 'What am I, chopped liver?') and it was remarkably smooth. Here are a few points of interest:

- Collin's head does not appear to be growing as fast as they would like. That's as much as they said and I didn't ask any further questions because a) he has had times before when it seemed like his head wasn't growing and then he would have a growth spurt, and b) if it's true that it isn't growing at the appropriate rate, there's nothing we can do about it anyway. I don't mean that in a callused way. It's probably more an issue of self-preservation. We are fully aware that there is a possibility that Collin's condition is degenerative, but we don't know yet, so there doesn't seem to be much of a point in thinking or talking about it right now.

- Collin is the official 'star patient' of the ketogenic program, according to the ketogenic dietician. His ketone levels, blood sugar, weight gain, growth, and specific gravity are all perfect. After surviving that hellish transition period, he is tolerating the formula well and he has been seizure free for 17 days. Unfortunately, there is no prize associated with this title, but Collin is satisfied with the recognition.

- The neurologist from Cincinnati gently suggested that we switch all of our care back to our Louisville neurologist to make things simpler for everyone. I agreed and had thought about mentioning this to her, but it was still interesting that she brought it up. She feels that she has nothing substantial to add to what Dr. Awesome is already doing. We came to her for a second opinion and her opinion is that Collin is still a mystery at this point. She will continue to think about him and wants to stay updated on what's going on with him, but all of our appointments and decisions will happen at our friendly local neurologist's office from here on out. This is probably good because:

- Th neuro nurse and I kind of rub each other the wrong way. She raises her eyebrows at what I say far too often and questions our decisions like she's the neurologist. Except that the neurologist supports our decisions. It will be best for us to go our separate ways.

After our appointment, we stopped at the farm to eat some wholesome food, visit with family, and have a wild night of crocheting, a PBS bluegrass special, and lots of squealing and kicking with Nana (Collin, not me). Good times.

Sunday, March 14, 2010

All the Better to Chomp You With

I'm happy to report that our trip to the dentist was completely uneventful on Friday. The dentist took a look at Collin's pointy tooth to make sure the damage wasn't reaching the nerve and then explained that there were a couple of things that she could do but that both would be uncomfortable for Collin and weren't guaranteed to work, so she would recommend just keeping his pacifier in his mouth during this grinding phase until something happens that requires the work to be done.

Can I get an amen?

They couldn't find any tooth cleaning agents without carbohydrates and so ended up giving him his cleaning with just water. He pretty much hated it and writhed all over like we were trying to pull his teeth out, but he recovered quickly and most of the office staff fell in love with him.

We're halfway through our Keppra wean at this point and it has been exactly two weeks with no seizures. He's been sleepy off an on for the past few days, but I think it's because his ketones have been pretty high, which can cause lethargy. But when he does wake up, hoo boy, watch out. He's a squealing mess of happiness. I'm going to try to get my act together and get some video this week. It's going to be a busy one, with therapies, meetings, and a trip to Cincinnati for keto clinic, but I'll do my best.

Thursday, March 11, 2010

True Test

This is Collin's 12th day without seizures.

Both of Collin's neurologists are of the opinion that he has seizures in cycles. I disagreed because only one of the instances they're referring to happened outside of an identifiable external stressor. But once they said the words, I haven't been able to totally disregard them. As one of the neurologists said, "The true test of whether the ketogenic diet is actually working will be in a few weeks when we see if he keeps cycling." So, now that we're approaching the two week mark, I find myself getting nervous. I'm watching him out of the corner of my eye when he sleeps and listening more closely to the monitor. We're still continuing with the medicine weans, however, until something happens that convinces us to stop.

Another thing I'm nervous about is taking Collin to the pediatric dentist tomorrow. It probably seems ridiculous after all of the other things we've faced, but you can get used to anything and I'm used to the neurologists and geneticists and hospitals. The dentist is new and I don't know what to expect or how to prepare for it. Collin has ground away almost half of one of his top teeth and I have no idea what they do for babies in this situation. And with the ketogenic diet, he has lots of restrictions regarding what they can and can't put in his mouth. And it's not like at the grown-up dentist where they can just tell you to open wider and move your head in between ridiculous questions about your personal life that you can't even answer because your mouth is stuck open. But something has to be done. One part of the tooth has worn away up to the gum and it's just not a viable option to keep a pacifier strapped to his face during all of his waking hours. So, we'll see.

Wednesday, March 10, 2010

Free Advertising

This is Collin doing one of the visual exercises for his NACD program. He straight up loves it.

Apple pays good money for advertising not nearly this affecting.

This Time Last Year

This time last year, I was sitting in the surgery waiting room at Children's Hospital while three-week-old Collin got a g-tube, Nissen fundoplication, and pyloroplasty.

Interestingly, our new friend Emily is having the same surgery right now. Please pray for her and her family.

Friday, March 5, 2010

He's Got Skills

This has been a week of laying low and recovering. Collin doesn't like to sit on his butt, though, and put the time to good use by learning some new things to add to his repertoire of impressiveness, like looking at things and reaching for things. Today, he combined the two into a feat that had me crying and running for the camera after the 10th time. Of course, as soon as I got the camera, he acted shy, but I did finally catch one on film. I submit it for your viewing pleasure.

PS - That gross crunching sound is Collin grinding his teeth - another new development that has already sharpened one of his side teeth into a vampire point.

Wait For It from Annie Kratzsch on Vimeo.

Monday, March 1, 2010

And..he's back

For the first time in a while, my crying jag tonight was from relief and happiness. Collin has been growing steadily more alert and interactive over the past couple of days and tonight he was smiling and squealing like it was the best night he could ask for.

And we haven't seen a seizure in two days.