See ya, 2011

So much has happened this year. There were many joyful times, but I can't say that I'm sad to see this year end. The going has been tough. But we've made it, and we are in a far better place now than we were in January. Helmet went on, helmet came off. Meds started and ended. Diet started, and will end in 2012 (more below). Whew.

We have had wonderful holiday celebrations with our families in Harrisonburg and Goshen. Micah loves his grandparents, aunts, uncles and cousins. He anticipated opening presents even more than last year. He reveled in all the Christmas music, and was able to sing along with parts of many carols. Once he heard "Let it snow", that became a favorite, and he would often sing it in the morning when he first looked out the window. Hoping, always hoping. This is a boy after my own heart. If this warm weather continues, we may need to move north! He enjoyed helping to decorate (and occasionally un-decorate) the Christmas "treat" (tree). No Christmas goodies for him this year, but then, he had no trouble maintaining his trim figure either!

So, food. In consultation with our doctor and dietitian, we have decided to try and take Micah off the ketogenic diet. He is doing well and not having any clinical seizures at this time, though he was, as of December 12, still having sub-clinical seizures. Not many, but some. We have increased a medicine to try and alleviate those last seizures. The diet change comes because our doctor no longer thinks the diet is beneficial to Micah. And believe me, if it isn't, I want to be DONE! It is hard enough to persevere when it was doing something. But when we heard our doctor equivocate about its effectiveness, the decision to stop was easy. We began the weaning process a little over two weeks ago, and it is proceeding at a considerably faster rate than we had originally been told it might be. For this I give thanks!

If all goes well and his seizures do not recur, his last date on the diet will be January 16. For several weeks after that he will not be allowed to have sugar or sweets, but other than that can begin eating regular food. He will have been on this diet for nearly a year at that point. David and I wonder what this will be like, to have a child who is able to eat normally. Be normally picky. Make choices about food. Have the occasional treat. Eat goldfish crackers. Eat bananas instead of just a tiny slice with his macadamia nuts. How will we handle not having the same kind of control? On the one hand it will be amazing not to have the responsibility of cooking separately for Micah, usually late at night when we'd rather be sleeping. But we have known exactly what he has eaten for every meal and every snack for a year. Will our keto-induced paranoia ease? Yes, but it will be an adjustment. As I grocery-shopped this week, I was wandering the aisles imagining all the things that we will once again be able to give to Micah.

More details about what is next on this journey will be forthcoming. But for now, we look forward with anticipation to 2012, knowing that we cannot go where God is not. Happy New Year, everyone!

Good News/Bad Mama

Today it has been five weeks since we've seen a drop seizure! We have received the preliminary results of Micah's EEG of two weeks ago, and it showed no clinical seizures, but that he is still having what are called "subclinical' seizures localized in the left frontal/temporal lobe. We don't know much about what this means, other than that we can't tell they are happening because they don't present outwardly (clinically).

We continue to rejoice in the cessation of the awful drop seizures and pray that it continues. Micah, as those of you who have seen him recently, has changed a lot, for the better. He continues to improve in communicating, and is rarely randomly tired in the middle of the day like he was before. He notices what is going on around him and responds to it. He is loud in church (we have to start working on when it is appropriate to talk loudly, and when it is not). We just haven't had to deal much with that recently. So we're on a steep learning curve as well. Discipline tactics that worked a few weeks ago no longer do. We are learning fast! He is so much more energetic and mischievous!

This led to a "bad mama" day on Thursday. For the first time since he started the ketogenic diet in February, he was able to sneak some unacceptable food. Twice. I felt pretty dumb. I was making some cookies and thought he either didn't care or couldn't reach them as they cooled on the counter. I was wrong on both fronts. All of a sudden he came up to me with half a cookie in his hand, some on his face and a delighted look in his eyes and said, "Yummy!". I immediately got it away from him and called the doctor's office. There are probably as many carbs in half a cookie as he gets in several days. I knew that he could have a seizure as a result. He didn't, fortunately. In fact it didn't seem to phase him at all. Other than he wanted more cookies. So I made sure that he couldn't reach them, but then about 15 minutes later, I found him on the family room floor with a jar of peanuts between his legs, chowing down. Argh! Again?! Poor kid just wants to eat regular food. I have no idea how many peanuts he ate. But he was fine, again. Until about 10pm that night. Everything came back up. Twice. His body just wasn't used to all that carby food. He was fine after he finished throwing up. I guess dealing with throw-up in his bed twice was some of my penance for letting my guard down. Twice. Now, I know for sure that I'm not actually a bad mama, but the dichotomy made a nice title.

Ah, well. No harm was done. We would dearly love to get him off this diet. It is becoming harder and harder to continue. Especially after he didn't have seizures in spite of cheating. We'll hear more from our doctor about that, as well as the results of the MRI he had yesterday, checking again for abnormalities in his left frontal lobe. No news is good news at this point.

In the EMU

As in Epilepsy Monitoring Unit at Children's Memorial in Chicago. Micah is hooked up to an EEG for the next 15 hours. Right now he is terribly itchy because of the electrodes. He also has not had a nap, even though it is 4:30 our time. Makes for a very grumpy boy. But no seizures for almost 3 weeks! We are anxious about the results of this EEG, because it could be that we find out he still is having some seizures and we're just missing them. It also may help determine next steps, which we hope will be reducing more medications and possibly even his ketogenic diet. All this would happen very slowly, so we're still looking at months of  adjusting and watching.

Micah had his last ACTH shot last Tuesday, and we have seen his appetite return to what it was before--that is, almost nothing, and he's also generally in a good mood. He also had his last dose of one of his meds, felbatol, that we started this summer. It has some nasty possible side-effects so we are glad to be rid of it.

We are so grateful for these days without seizures, and hope that they continue. We are seeing improvement in his speech, as well as general affect. He's just less foggy.

In gratitude,
Melissa

More good news

I know many of you are eager to know what has been happening this past week. Well, I'm happy to say "almost nothing." We saw one seizure on Tuesday, a very slight one, but no others since last Friday (November 4). That means 8 of the 9 last days were seizure-free! We are so thrilled, but still anxious to see how Micah responds to weaning off of the steroids. There is always the chance that they might come back. But we are already in the process of reducing the dosage and so far, so good.

We got the results from the EEG that Micah had on November 4, after 2+ weeks on the steroid when he was still having about 5-10 seizures per day. It was much better than the one he had had October 17. That one was described as "truly horrible". This most recent one qualified for "still not normal, but not as bad" status. We are hopeful that when he has another one on November 28, that there is even more significant  improvement.

We are still dealing with moodiness related to the steroids, as well as early mornings. Micah still hasn't adjusted to the time change, and we think the steroids are messing with his sleep, too. I'm not a fan of seeing a "3", "4" or even "5" as the first clock numeral when Micah decides he is done sleeping. But we are surviving the side effects, and, really, almost anything seems worth it when we are getting amazing results.

Today is a miracle

Today we saw no seizures. First seizure-free day since August 22. Of last year. We are so grateful. Again, we don't know what tomorrow will bring, but today is a miracle.

Positive Change

Well, it seems clear that this steroid treatment is doing something significant--in a good way! In the past few days we have continued to see a definite decline in the number of seizures Micah is having. He had the lowest daily total on Tuesday (7), that he has had for a year, and he seems to be on the way to a lower total yet today (only 4 by 6pm), though yesterday the total was 14. We are so thrilled and grateful for this progress, even while we have hoped for complete cessation.

And yet I have hesitated to mention it. That this treatment might actually work seemed almost far-fetched in the face of the record of the last year and a half of disappointment after disappointment. That he might someday even be completely seizure free is The Hope That I Hardly Dare Speak (except before God). Yet we seem to be inching closer to that possible reality. Still, we have seen dips before and then seen the seizures come roaring back, which is devastating. That could happen again this time, we just don't know. We will be tapering his injections for the next two weeks, and we'll just have to see what happens. Still, we are very much enjoying this time when he is clearly more lucid, not seizing all the time, and even talking more. We continue to be so grateful for all the thoughts and prayers that you are saying on our behalf.

We don't know what next steps might be for further control. We hope to find out more when we head to Chicago again tomorrow to see Micah's specialist. He will also have a 4-hour EEG while we are at Children's Memorial. That will check to see what's going on in that beautiful little brain now that we're not seeing as many seizures--we hope also for a significant change in his EEG results.

Our little dartboard

My poor boy. On Monday we more than doubled Micah's dose of ACTH, which means he has to have two shots per day instead of only one. Sandy continues to do the morning one, and I am doing the one in the evening. The front of his thighs are full of small bruises and tiny pinprick marks. Last night when I gave him the injection, he was distraught for probably close to a half hour afterwards. It was so hard to have him want to be held and comforted, but not want to be touched by us (David had to hold him down for the shot and I was the one who actually poked him).

But, fortunately, the injections seem to be having a positive effect on Micah's seizures. We have seen a fairly significant reduction over the past few days. We don't know if it will last or if it is just a blip, but we are feeling good about this. It makes the distress of the shots feel worth it.

He is definitely cranky at some points, lethargic at others, and needs to just pace the floor sometimes. He is still sleeping through the night. That that would change was our biggest worry--none of us do well on little sleep.

So we are doing alright. We will check in with the doctor on Monday to give a weekend report. We don't know if we might see further improvement. It would be great if that was the case. If not, we'll try something else.

More ups and downs

We are settling into a bit of a rhythm here at home. Injection is first thing in the morning. Micah still greets Sandy with a smile and only starts to get upset when the alcohol prep begins. He's a pretty forgiving kid!

We have spent some time outside, since that's fine for Micah. He just needs to avoid places where there are many people (and germs), like church, grocery stores, daycare, etc. While the first day home was pretty nasty weather-wise, we have had a string of nice days in a row. We are trying to enjoy them while they last! Our new maple tree that was planted late last fall is turning a bright red--just what we had hoped!

Micah continues to have some mild side effects from the ACTH--mostly some irritability and occasional trouble going to sleep. But he's still sleeping through the night, so it's hard to complain! His blood pressure and other warning signs are fine. But the past two days have been discouraging. Thursday and Friday we really thought that there were significantly fewer seizures, like half as many as we have seen recently. But then yesterday was not a very good day. We saw 25-30 again. Then he had too many this morning, first thing. But now he has gone for several hours without any that we have seen, so we hope this will continue. This is a frustrating disorder! And disorder is the right word. It's not predictable. It is not rational. And it doesn't follow any kind of pattern.

We will check in with our doctor again tomorrow. It is likely that we will increase Micah's dosage from 40 to 80 units per day. We hope he will still tolerate that well, and that it might do something more to relieve the seizures.

Last night David and I were able to get some time away together, thanks to my parents, to celebrate our birthdays. We did a round of disc golf at Oxbow Park and then had dinner. A nice, relaxing, not-too-late evening.

Home again, home again

We arrived home about 10:30 last night. My parents had driven over to deliver the medicine for Micah's injections, and were here to greet us. Also waiting for us was a sparkling clean house, thanks to the Preacher Mamas. We were so glad to arrive safely--it was a dark and stormy night! Lake Michigan waves along Lakeshore Drive in Chicago were quite something. I don't know how big they were because it was hard to see at night, but the spray was going probably 30 feet in the air where they were hitting the seawalls.

It felt so good to sleep in our own beds last night. We all slept hard until about 6:30, when we got up to greet Sandy, who so very kindly came on her way to work to take Micah's blood pressure and give him his injection. I don't know what we would have done this morning without her! There was a bit of a snafu regarding the needles, but she was able to calmly figure it out, thanks to her expertise. It also didn't take her nearly as long to do the injection, or maybe it just seemed to take forever when I was actually the one who did it.

After Sandy left, we all went back to bed for a few hours. Micah asked to go outside a few times, but that was a no-go because of the rain, wind and cold. We'll see how cabin-feverish we get in the next few weeks. Micah had  a pretty good day, but we are finally beginning to see some of the grumpy side effects of the ACTH. It was clearly not much fun to be Micah at times this evening. It wasn't all that much fun to be his parents, either, for a while, but we feel sorry enough for him that we don't begrudge him his bad mood. We know it is not his fault; we just have to be patient over the next few weeks. And really, very tolerable, since it isn't all the time--yet.

We are grateful that Micah is tolerating the steroid fairly well. We are grateful for friends and family who are willing to share their time and skills to help make our journey easier. We are, most of all, grateful to be home. We are so thankful to have a world-class facility within a few hours' drive, and we are always equally glad to see it in the rear view mirror as we head out of the city.

We're headed home!

Because things are going so well, we get to go home today! We are thrilled at the thought of being able to sleep in our own beds tonight.

There is still no change in his seizures, but, again, that is not unexpected. We are glad that his side effects have been minimal so far. He was a bit grumpy this afternoon, but that could be related to the fact that he didn't have a nap and slept 3 hours less than usual last night.

We are waiting for our discharge papers and a few other things to take home: a script for Zantac (to avoid heartburn), a blood pressure cuff, some supplies to check his urine and BMs for various things that shouldn't be there--lucky us!

We're really headed out now, so more later.

First Injection/Report from Tuesday

Well, we all made it through the first night! David and Micah's night was shorter than mine, but they did get some sleep. They were awakened this morning by a doctor. Then came another, and another, and the two lab techs, and then the nurse, and then more doctors, and then...you get the idea. I arrived back at the room around 7 this morning, just after the first doctor arrived to check on Micah. We saw our attending doctor, Dr. Nangia, and her team a bit after 9, and then shortly after that our nurse came in to give Micah his first steroid injection. Before she began she explained everything she would do, since we need to learn to do this in order to be discharged. And she handed us the sheet of 29 steps to a successful intramuscular injection. Yep, twenty-nine. Granted, it is broken down into baby steps, but still, it fills up two pages. Lots to remember for those of us who have never done this before. The nurse did this morning's injection, but I will do it tomorrow. We got our practice orange, vial of water and all the other stuff that we need to do this. And we practiced. Not quite sure how an orange will actually compare to how it feels physically to push a needle into Micah's thigh. Emotionally...well, an orange is not flesh of my flesh and doesn't have a tendency to cry when stuck. But we can do this!

As for side effects, nothing of note has happened yet. No grumpiness, no hyperactivity, no sleeplessness. And on the more serious side, no high blood pressure or other problems. His chest x-ray was clear except for a bit of residual something-or-other from the pneumonia earlie; nothing of any concern. Echocardiogram showed a strong, healthy heart of the correct size. Blood work was fine. No problems with the TB test. So we are trying to stay hopeful. No change in seizures yet (no increase either, which sometimes happens initially), but that is to be expected. It takes a few days and sometimes longer to see results.

We had visit from our brother-in-law, who was in town for a conference, to break up the monotony of an afternoon of no doctors coming by. Thanks, Padraic, for taking time to come and see Micah!

We are so blessed by the many ways people are supporting us. Sunnysiders have signed up to pray nearly around-the-clock for these two weeks; Preacher Mamas are antibacterializing our house as I write (if they could find it under all the clutter we left behind!); we have gotten numerous encouraging emails, cards, texts, messages--thank you so much! We are grateful for this time we get to spend with Micah--one of us is with him nearly all the time. We did get a break tonight when Volunteer Diana stayed and read Hooray for Fish to him while David and I went out for supper. They were reading it when we left, and still reading when we came back an hour later. We'll just have to trust her that they did take a break from it somewhere in there!

Good night, sleep tight. Here is a verse from the song we sing every night before bed:

Thank you for the night
A measure of your care
In darkness, as in light,
You, Lord, are there.

Night One in a Shared Room

We arrived safely at Children's Memorial. I am checked in to the Ronald McDonald House a few blocks away. So far today Micah has had an echocardiogram, which took about an hour, a TB test, and is now hooked up for a video EEG--electrodes all over his head, wrapped in gauze with a colorful wire ponytail. We are waiting to go down for a chest x-ray, so his EEG paraphernalia is in a Buzz Lightyear backpack. We went for a little walk in the hall, and it is so heavy it almost tipped him over! We are grateful that this x-ray is happening shortly (about 8pm our time) rather than the middle of the night, as we had feared. Apparently there were lots of ER patients who needed x-rays, so we had to wait.

In the morning Micah will have a series of blood tests and then we expect to have his first injection. We'll see how that goes. He has been eating well today, though his meds were a bit tricky tonight.

It is always a bit of a shock to have our schedule and environment in the control of others.

A FEW HOURS LATER...

Chest x-ray complete. We hope his lungs are clear from the pneumonia of a week and a half ago. Now it's time to sleep, but it is bright and our roommate is watching TV. The volume is not overly loud, but Micah is used to a very quiet, dark room to sleep in. I will head back to RMH soon and David will stay here and (we hope) sleep. Thai noodle curry for supper hit the spot and now all we need is a good night's rest to prepare for what tomorrow may bring.

We're off!

We have a bed for Micah at Children's Memorial and a room for one of us at the Ronald McDonald House nearby. Looks like a lovely day to travel to Chicago!

Take that (azithromycin), pneumonia!

Micah is healthy once more! He woke up on Sunday with a fever again, and we didn't know what to think. It had been 2 days since he had had a fever and Sunday was the last day of pneumonia antibiotics. We decided to do the "ignore it and see if it goes away" therapy, and this time it worked. He's been fine since Sunday. Except for some minor coughing just when he wakes up, he no longer has any symptoms.

As always happens when he gets really sick, Micah's seizures decreased. The reasons for this are a mystery, but it happens every time. But, unfortunately, after several days of seizure totals in the 10-15 range, yesterday morning he had 8 within one hour, and got above 10 in three hours. So the lull is over. I am grateful that while he's sick he has some reprieve from the constant seizing, but I get so ticked off when they come roaring back!

We are still planning to head to Chicago on Monday, October 17 to begin the two weeks of ACTH injections. We are hoping like mad that this will work. If it doesn't...well, that is going to be pretty tough on us.  We will be spending the next few days getting ready to be gone for a week. Today I am power-cooking a week's worth of meals for Micah that we will take along. I have lists going--I do love my lists. And we're trying to remember what we had along last time but didn't need and what we didn't have that we really wanted. I know we bought earplugs and Tylenol PM at the pharmacy across the street from Children's Memorial, so those are things we will take, for sure! Also, snacks for David and me. For some reason we had trouble finding time to eat last time. We know more about what we can expect during this admission, and we sure want to hit up our favorite restaurants in the hospital's neighborhood--Nesh (Falafel) and Noodles in the Pot (best Thai I have every had), for starters. There are some advantages to having to be in Chicago.

I'll try to keep this blog current as we go through the next few weeks.

The next step

It is easy to complain. It is sometimes much harder (at least for me) to see the Light in the midst of darkness. I have been inspired by several people I know who are fighting cancer and who have given a great gift by their simultaneous acknowledgment of the darkness they feel and their articulate praise for the Light they see even within that.

First, our darkness. Micah continues to have between 30 and 40 seizures per day. They remain the  "drop seizures" that he has been having for the past year. He continues to wear his helmet most of the time he is awake. The new medicine we tried for him in the summer, which has some serious risks but also had some success among children with Micah's seizure disorder, has not worked. If anything, he has more seizures now than he did a few months ago. We have been very discouraged. His verbal skills continue to progress at only a glacial pace, which means he has a speech delay in spite of speech therapy. Darkness.

Then last Wednesday we went to Chicago again to consult with Micah's specialist. In that appointment we decided not to try any more drugs at this time. We have tried 5 different anti-seizure meds and one benzodiazapine in the past year and half. So our doctor recommended we try a different approach. We agreed that we need to take the next step in trying for relief for Micah. So we have decided to try a 14-day round of high-dose steroid injections. There is some speculation that seizures are related to inflammation of some sort in the brain. Steroids are used in the treatment of all kinds of inflammation, from asthma to sore knees and have been used successfully to treat seizures that respond to no other intervention. The doctor put the odds at 50/50 and was apologetic about that. I said, "That's amazing!" We have not had odds that good for anything since the first medicine we tried. Even the keto diet had lower statistical rates of success. Light!

This course of action is not without significant risk. It is used only in severe and intractable (uncontrolled) situations. One in 100 patients who do this treatment die from complications. The most common complication is infection, since this high dose of steroids wreaks havoc on the immune system. Micah is fortunate not to have any diagnosis other than epilepsy (such as an immune system or GI problem). This statistic of 1 in 100 takes into account all people who do this treatment, including those with other underlying problems. Still, it is terrifying to consider subjecting one's child to such a risk! We did not make this decision lightly. It is also outrageously expensive. Just the steroid itself will be about $50,000 for the 14-day supply. Yes, you read that right. And, no, we won't have to pay any of that, thanks to our health insurance. We do not that that for granted.

We will be Children's Memorial Hospital in Chicago for his monitoring for several days at the beginning of the treatment. While there we need to learn to give him the injections in order for them to allow us to go home to finish out the fourteen days. (Thanks to a nurse-friend from church who has offered to come to our house and "be the bad guy", we may learn the skill but not actually have to do it!) During that time, as well as for two weeks afterward, he/we will be quarantined. We will not take him to public places. I will be taking those four weeks off of work, and David will also be taking some time, since Micah won't be able to go to daycare. We must take every precaution to avoid his getting sick.

But if it works, it could mean his being completely seizure free, or at least with significantly reduced seizures! This is the next step in this journey. We pray for his safety and healing in this risky process! We are both fearful and hopeful.

We were scheduled to begin this round of injections on Monday, October 10, but Micah suddenly got sick on Tuesday of this week. Really sick. We found out on Wednesday that he has pneumonia in his right lung. Darkness.

But after a valiant effort on his part yesterday NOT to take his antibiotic, we were able to get most of the dose down his throat. We have to give it to him in crushed-pill form, since he can't have the kid-friendly sweet kind--and let me tell you, it tastes extremely bitter and is nearly impossible to hide in anything we are able to give him. Today and then for three more days he needs only one-half of a pill. This morning's dose went down fine with his other cocktail of applesauce, oil, two supplements and three anti-seizure meds. Thank goodness for fast-acting azithromycin. We just hope it does the trick. Last time on amoxicillin he had to take two pills, twice a day for 10 days. And today after just last night's dose he was clearly much better! Light!

So we will delay this steroid treatment for one week and plan to begin on October 17 instead. Micah's immune system is compromised right now and it must be in tip-top shape before we begin wearing it down again with the steroids. We thank you in advance for your thoughts and prayers as we try to wait patiently this week and as we anticipate venturing into the risky, sometimes dark unknown. You continue to help us see the Light.

Melissa

Chicago 8/24/11

Today we traveled to Chicago again to consult with Micah's epileptologist. We are disappointed that we have not seen more progress with the newest medication that we are trying. It is always helpful to talk with her about what has been going on and get advice for what's next. We now have an updated plan for increasing/reducing various meds over the course of the next few weeks. We go back on September 28 for another follow-up.

And we do know that if this medicine does not work, there is at least one more that works differently than what we have tried so far. After that, we would explore other alternative options, including, possibly, more drugs. Yuk. I am so sick of this! Micah has been doing well lately. Seizures are still averaging 20-25/day, but his development seems to be increasing somewhat. He is talking more and seems to have a longer attention span for doing fine motor skill play. He played with his Duplos for at least a half hour by last night. Building, taking apart, arranging on the floor and the couch. He was having a blast! It was so good to see. We are encouraged by these small steps forward.

But sometimes I get so mad at these seizures! Micah has had some nasty falls recently, despite the helmet. He has hit his forehead HARD several times. Yet, we can't put him in a bubble or a padded room. We still have to let him live. But as any parent knows, it is so hard to watch your child get hurt, especially when you want so badly to fix what is causing that hurt.

We are grateful for all the continued thoughts and prayers as we travel on this LONG journey with no end in sight.

Three Years and One Year

Three Years!
Micah turned three years old this past Tuesday. He seems pretty grown up in so many ways, and though it seems like yesterday that he was born, I can really not picture him as a tiny baby anymore. We had a small party with my parents coming to our house in person and David's parents joining us via Skype. We wanted to make sure that Micah had the same sort of food that we did, so we had an Indian feast. Micah had Paneer Masala (cream, coconut oil, tomato and queso fresco, with garlic and cumin). He ate it so fast--we have not seen him eat like that for several weeks. Then for dessert we had blueberry-lemon cupcakes and ice cream. Micah had his keto cupcake made with crushed macadamia nuts instead of wheat flour, and his frosting was just cream and stevia with some yellow food coloring. He really enjoyed that, but his ice cream not so much. That was not unexpected; he is still wary of white creamy stuff as he has been since the beginning of the diet. Still, we thought that maybe since we were eating the same thing it might spur him on. But it didn't. It was ok, though, because he had eaten plenty of food!

But the best part of the whole day for him was the candles. He had been talking about them for DAYS. We put three in his cupcake and he had them blown out before we even got finished singing "Happy Birthday." I was pretty impressed at his windiness!

Getting ready to blow...

And, they're out!

Taking a closer look.

Happy family.

But now he wants candles in all his food, at every meal (I want CANDLES!). Since we really need him to eat his food, we figured it is a pretty harmless thing to do. So whenever he asks, we stick a candle in his food and he blows it out before eating. I have to say, it works better in some things than others... His desire for this has already started to wane a bit, so we'll see how long that lasts. Pretty cute, though.

Candle in another meal later in the week. This one was too soupy to hold it up, so my hand had to help.

Puffy-cheeked blowing. He was successful again!

He got some great presents from his wonderful grandparents and aunts and uncles. He is one lucky boy! And it was fun to see him really get into them.

Opening Mr. Potato Head with Mama and Grandma and Grandpa Fisher. Grandma and Grandpa Fast are up on the bookshelf (via Skype).

Hmm. What's in here?

Jumbles! If you don't have any, you should get some. They're kind of addictive.

Look at that cute bum inside the new tunnel!

During the heat wave he has enjoyed the back yard splash park (tiny pool and water hose). We put the hose nozzle on "mist" and just let him soak himself.

It's good to drink, too!

Bliss.

Daddy needed to cool down, too.

He also likes to eat outside under the umbrella.

 And snuggle with Daddy.

We had a wonderful vacation with my parents and brother to a B&B in Michigan City, Indiana. We spent one afternoon at the beach, and much of our time enjoying the large yard of the house we stayed at. We played corn hole, sat in hammocks, and generally relaxed.

Micah was able to spend a lot of time without his helmet, both on the beach and in the grass where there was no danger of him hitting his head on something hard if he fell during a seizure. He especially enjoyed all the shoulder rides Uncle Matthew gave him! Daddy and Mama have their limits, but uncles can just go and go.

This is what Micah did when we told him to fly like a bird.

On Sunday morning it rained, so we took some family photos on the porch.

Almost all of us. We missed you, Hannah!

Finally, a smile from Micah.

With Grandma and Grandpa Fisher and Matthew

Micah loves his uncle Matthew.

One Year.
As I mentioned in my post about a month ago, it has been more than one year since Micah has been having seizures. It has been a LONG year. As we celebrated his birthday this week, I was remembering last year's birthday, when he had the highest seizure total for one day up to that point. It was not a good day, though we did have tons of fun with the Kratzer Family! But a year ago I never imagined that we would still be dealing with this situation. A year ago I was hopeful and could imagine the seizures stopping, because we still occasionally had a day here and there with no seizures at all. Now I can hardly remember what life was like pre-seizures. That almost takes my breath away when I think too much about it. And I have realized that it is so much a part of our lives that Micah has seizures even in my dreams--not that I dream about him having seizures, but that it just happened in my dreams, too, because that is what happens for him.

He began a new medicine three weeks ago. After having a seizure spike at the beginning of July, things seemed like they were calming down somewhat again after this new med started. But we seem stuck in a rut right now, for the past two weeks or so. It is extremely frustrating and disheartening. Though he is still on a very low dose, so we have quite a bit of wiggle room for increases. It is just a waiting game. We increase, we wait, we do a blood test to check for side effects, we wait some more. So far he seems to be tolerating it relatively well. No serious side effects. Mild ones that we have noticed are some insomnia (though we're not really sure if this is the meds or just a change) and a decrease in appetite. Hence my joy at his eating a complete meal voluntarily as mentioned above.

This is taking a toll on all of us, but especially on Micah. We so desperately want the seizures to stop because they are holding him back. Before they started, he was on target or ahead of the game in all areas of development. Though we haven't seen any serious regression, the slowing of his development has meant that by now, one year later, he is behind where he "should" be. So we have started him in Speech, Occupational, and Physical therapies (privately, since he didn't qualify for First Steps until he was too old to take advantage of it, and because we have already met our deductible). On Mondays and Fridays Micah and I make the half-hour drive to Goshen for these therapies.

For good or ill, we as parents in this day and age tend to be caught up in our children's development. We want them to succeed. In fact, we want them to be the best, the smartest, the fastest, the most artistic! It is very difficult, then, when my child is not up there at the front of the pack right now. I want him to feel "normal" and we are doing everything we can to help him. But it is still hard. I know from how he was developing before the seizures that he has tons of potential and it is painful to see that not being realized right now. We pray for patience for us as parents as we deal with these anxieties, and also for patience for him, because it is clear that he gets frustrated sometimes at not being able to express himself completely.

Yet we would not trade this for anything. What a joy it is to be the parents of such a sweet boy. The other day when I left, I said, "Micah, I love you!" and he responded, "I love you too, too, too!" Talk about a melting heart...! Happy Birthday, Dear Micah! We love you so very, very much! And as a Passover Seder is ended with the words, "Next year in Jerusalem," so also is our prayer, "Next year, a birthday without seizures!"

An Update

Yes, we're still alive and kicking! I just haven't gotten around to posting for a long time. Micah is feeling and eating much better than he was. The supplement (potassium and citric acid) for acidosis has been doing its work and we can tell a huge difference. Seizures remain pretty much the same.

Two weeks ago we consulted with our doctor in Chicago about next steps. We have begun to reduce one of Micah's anti-seizure medications already. After we return from the Pittsburgh Mennonite Convention the plan is to begin a new medication. Other children have had some success with this med, so we're trying to stay hopeful. But that is so difficult. This whole last year--yes, it's been more than a year!!--has been an exhausting roller coaster of hope and despair as we tried new treatment option after option with little success, until we began the keto diet. It has helped a great deal, but even that has left us wanting more control! So, how much hope do we put in this next drug? How can we steel ourselves for it not working, or even worse, for Micah to experience a serious side effect? Holding all this in tension is exhausting, to say the least.

We have had a good week in Pittsburgh, but I am very ready to go home tomorrow! Micah has been his usual fabulous self, enjoying the children's convention childcare and even sleeping pretty well, considering how different the conditions are than at home! And I am very ready to be back in our own kitchen. We had a small fridge in our hotel room and we brought along an electric skillet, so we've been cooking in-room. My mom had prepared a bunch of batters for one of Micah's favorite meals, cheese quesadilla (thanks, Mom!). We had also made many batches of macadamia nut and cheese crackers another favorite. Most of his snacks were macadamia nuts and cheese. Did I mention that this diet isn't exactly healthy on its own? We'll go back to some fruits and veg once we get home, but we had to go with what was easiest to eat on the go. He has eaten very well all week.

So, we have some changes coming up with medication, and are praying for no side effects (or at least nothing serious) and that this med might give Micah more relief from his seizures.

This continues to be a very difficult journey for me, personally, and for our family. Sometimes I do not think I am strong enough to survive the battering my emotions have taken. But I've made it this far, so that is encouraging! We can often deal with more than we ever thought we could. And all of you out in blogland have also helped me make it thus far. Thank you for your continued prayers on our behalf.

Acidosis

I just got the call from our doctor that Micah is acidotic. That could explain a lot of what has gone on this week--the lethargy, not wanting to eat. Poor kid. We will give him another supplement for that.

A tough week

It has been another long week. It began last Friday, just as we put Micah into bed. Upchuck. Earlier in the afternoon, I suspected that he may have eaten a piece of a fungus from our yard. With all the rain we have been having, they were prolific! Anyway, I tried not to be too concerned until he started vomiting. So, we called poison control (yes, again!). The very nice person on the line said, "Well, we put fungus into three classifications. First, the totally benign. Second the gastro-intestinal irritant. And third, something more serious. We won't know whether it is the second or third until he doesn't stop having symptoms after 6 hours or so." So we waited. He stopped vomiting after a few hours, thank goodness. He never had any other symptoms: no fever or pain that he let us know about. But we ran out of clean sheets for his bed for the first time in his life--shows how fortunate we have been with him so far!

After a sluggish day on Saturday, he seemed to be fine, but he wouldn't eat much of anything. His canon of food that he's willing to eat just keeps shrinking. He is physically very capable of eating by himself, but lately we have had to feed him nearly everything. If we wait for him to eat, he just won't. And since his food is part of his medicine, he needs to eat! We have resorted to sort of holding him down to get a few bites in his mouth. It feels terrible for us and for him to do that, but we don't feel like we have much of a choice. We have been in contact with his doctor and keto team, and he had some blood work done on Friday. Again, we wonder if he is ketoacidotic--too much ketosis--which can lead to feeling generally crummy. That would explain a lot. We hope to find out tomorrow.

And then on Tuesday, I woke up feeling pretty awful myself. So we think it was probably a virus after all that Micah had. Made me feel better as a parent that I hadn't allowed him to poison himself, but worse for myself for catching whatever it was.

With every meal, every bite, really, being a struggle of wills, mealtime is exhausting. And it's worse while being sick yourself, that's for sure. By Wednesday and the latter part of the week, I felt like giving up on this diet. I think we sort of thought that the hardest part of this diet would be at the beginning. But four months in, it's harder than ever. No, we're not actually giving up, we're just frustrated and discouraged.We were wondering, though, what to do if he absolutely refused to eat anything--we were almost at that point.

And then on Saturday, a bit of a breakthrough. In racking my brain for any idea of a new recipe, I came up with a winner--cheese and macadamia nut flour crackers. Actually, they are really good. When Micah ate one, and then another I just started crying with relief. These were the first bites of food he put in his own mouth for a week or more (the poor eating had begun even before he got sick). And he has eaten these crackers several for every meal since then. We hope that this may lead, after a time, to him being willing to eat other things again, too. Until then, if he eats macadamia crackers for every meal, well, at least he's eating something. Thank you, God, for macadamia nut deliciousness.

Keto Haiku

Breakfast
Bite by bite I coax;
applesause, cheese, applesauce
today I succeed

Lunch
The eggplant, I thought,
would tempt you, but I guess that
I was wrong this time

Supper
What do we do now,
when you won't eat anything
but Kraft cheddar cheese?

Relief that Micah didn't poison himself by eating a "mushroom" from our yard
I guess it was not
the fungus after all, then,
since I am sick too

Misunderstanding and Clarification

Last Friday we were in Chicago seeing Dr. Nangia, Micah's epileptologist. It was an uneventful driving trip, but with more traffic coming home than we have experienced recently (bad timing, I guess). As for our consultation, we didn't make any decisions, but heard about some possible future treatment options. We have seen a significant reduction of seizures on the keto diet, but he's still having 20+ drop seizures every day. We increased his ratio May 6 to the highest ratio that is permissible. We have not yet seen any reduction in seizure count, but we continue to hope for a change in the next few weeks.

There are a few treatment options that our doctor wants to try next, but both of the next two options have scary side effect possibilities. We have tried the "first line" treatments, which have not worked as we had hoped. We will continue with the diet, but will also try and get more complete control with medication or other treatments. So pretty much anywhere we go from here will have more risks. These are difficult and frightening decisions we are facing, weighing risks and benefits, relying on our doctor's knowledge and the statistics in addition to prayer and listening to our gut instincts.

There was a major misunderstanding with our doctor for part of the visit. We both heard her say that 20-30% of people who take felbamate, the next drug she recommends we try, DIE. WHAT!?! Who would take that risk? Why on earth was she recommending something so dangerous? The FDA approved something so dangerous?? David and I both asked questions trying to figure out if that is really what she meant. Several times. "Have you ever had a child on this medicine die?", "Are you sure that 20-30% of people on this drug die from side effects?", etc.

She kept insisting that there is a serious side effect, aplastic anemia, that causes these deaths. We said, of course, absolutely not! We don't care how many seizures he has, we're not going to take that kind of chance with our baby. When she finally left to go get something for us, we decided we had to ask yet again, if what we had heard was what she meant to say.

Now, you've probably guessed that it WAS NOT what she meant to say. Here's the real scoop. Statistically, 2 out of 10,000 people who take this medication, felbamate, develop this terrible side affect, aplastic anemia. And of those, 20-30% will die. It's not insignificant, but it is not anywhere near the risk we thought it was. She knew what she meant to say, and I think because of this she kind of blocked out what our questions were actually getting at. I should say that we really, really like this doctor, and this doesn't change that. It was just a disturbing 30 minutes until we got the misunderstanding straightened out.

And our notion of what risk there actually is is kind of skewed now. It almost feels like no risk at all at this point, even though we would have to sign a waiver giving permission for Micah to be on this medicine. The statistical risk of dying from this complication is about 1/1000th of 1%. As a parent you never want to have to make these kinds of decisions, putting your child at risk. We can't ignore the possibility, but what we're dealing with now with Micah's seizures is not easy, either.

In spite of the scare, though, we came away from this last appointment feeling hopeful. We are not nearly at the end of the line of treatment. Even if these two proposed drugs do not work, there are other options. We will keep trying to get control of these seizures so that Micah's life (and ours!) can be as normal as possible. We pray for the day when the helmet can be retired for good.

Getting Away

Last weekend David and I had the privilege of a night away just the two of us. It has been a long time since that has happened and we needed it! Micah went to his grandparents' house for the night and we headed to Holland, Michigan to stay at our favorite hotel, CityFlats. It was nice (as any parent knows) to be responsible for only ourselves again for a brief time. Micah had a great time with Grandma Marg and Grandpa Jim. The weather was windy, but not rainy or too cold, so we were able to do some walking. Sunday morning we visited Mars Hill Bible Church in Grand Rapids, Michigan, where Rob Bell and now Shane Hipps are pastors. Quite the interesting place--we enjoyed our visit. It may warrant another post of its own sometime.

The preparation for being away from Micah, though, was intense. I had to prepare all his meals and snacks, label everything, and include some "emergency" food in case he wouldn't eat what we sent along. It took a long time! This is a complicated, very specific diet that he is on, so I didn't want my parents to have to deal with that this time.

We went through a phase this week where Micah was refusing to take his medicine. He has a very strong tongue and a convincing fake swallow! Even with a syringe he was able to spit it back out. So that was stressful. Not because we think his meds are doing much, but because it can be dangerous to suddenly stop seizure medicine. But nothing bad happened because of it, and the phase is over, thank goodness!

Micah's seizure numbers have been steady in the upper teens and low 20s for the past few weeks. We have one more increase in his diet that we can do, to 4.5:1. We are in the process of getting all his meal plans switched and approved by the dietitian. Once we do that, we'll just wait and see and hope for even better control. We saw a significant decrease in seizures with our last fat increase.

I'm used to the helmet now. He's been out in public with it and doesn't seem to mind the feel of it on his head. And every time I hear the thunk of the helmet hitting something during a seizure I am so grateful it is not his head. He has been saved from a few hard falls because of it, especially outside on the cement. It has given us some peace of mind. And yes, he does look like a cute jockey or a polo player as many of you have pointed out!

We head to Chicago next Friday to see the epileptologist at Children's Memorial. I imagine we will discuss what comes next, after this final increase. We do not expect it to lead to complete cessation, so we will need to think about future steps to gain more control.

As I said, it was so nice to get away. We were able to relax and let some of these worries go for a time. It was also wonderful to see Micah again on Sunday. We sure missed him!

Food and a Helmet

We have had a better week. Micah has been mostly eating well again (finally!), and the seizure count has been under 30 per day for more than a week. Most days have been in the low 20s or even the teens. This is good progress and we pray it continues to improve!

Spaghetti squash "noodles" have become a new favorite, with one of three sauces: pesto cream, tomato cream or peanut. Once the squash is cooked and the noodles removed, it is quite an easy meal. We also think we have a reliable breakfast meal--bread and butter (Next day...I guess not after all). It does look kind of funny because the butter layer is as thick as the bread itself (which is kind of like pound cake made with eggs, butter, cream cheese and ground almonds--yum). For a kid who ate oatmeal every day for breakfast from the time he was about 9 months old until the day before he started this diet in February, variety is not important. We just need to find meals he will reliably eat.

It does look kind of funny because the butter layer is as thick as the bread itself (which is kind of like pound cake made with eggs, butter, cream cheese and ground almonds--yum). Here it has been heated briefly in the microwave so the butter softens and begins to melt.

We finally got him a helmet last week. He has what are called "drop seizures" which basically means that his head drops forward and if they are long enough (1 second +), he sometimes falls down head first and can't get his hands out to stop himself. So, to protect him, a helmet was necessary. He will not wear it all the time, and right now he has to get used to it so we're working up to him wearing it more. I have to get used to it, too. It is such a visible reminder of what is going on. We had put this step off for a while, hoping that the diet would work quickly and completely enough that we wouldn't have to get one. But after a few nasty falls in the past few weeks, it was clearly time to do it. But it's hard. I think about going out in public with him wearing it, and I don't want people to treat him differently or feel sorry for him because of the helmet. He's a normal kid who just happens to have seizures. This is something I have to work through (and let go), because my discomfort is not important when compared to protecting him from having a concussion, and I don't want him to feel self-conscious about wearing it. And he does look cute in it--like a cross between a biker dude and a hockey player.

It's another step on our journey with epilepsy--something we never expected to have to deal with. We celebrated Easter yesterday, and feel encouraged by the signs of new life we are seeing in what seems like a trend toward fewer seizures. And we have to keep on doing what we have been--trying to be patient.

And here are a few Easter morning pictures.

Just one bite. Please?!

Micah has not wanted to eat the past few days. This is very stressful for us since his food is his medicine right now and as a result, we are anxious and tired. We pray that this is just a phase and that he will want to eat consistently again soon. We are seeing some results from this diet, so we really, really want it to be feasible to continue. We think he may have been feeling under the weather stomach-wise, so that may play a role. Or maybe it's that he's just not growing as much or maybe it is the ketosis-induced appetite suppressant. In any case, we need patience and energy right now. They have come when we needed them in the past. God is faithful and we are confident that we will find our way through this blip.

Dad's Little Rock Star

Micah needed some new spring PJs because the ones from last spring and fall are much too short, and it's still too cold for short sleeves and shorts. Trouble is, all I could find in the stores were summer ones. I finally found ONE set in his size on a clearance rack--pants covered in electric guitars, and a black shirt with "Dad's Rock Star" complete with a lightening bolt for an apostrophe. I usually don't go for clothes with cutesy sayings on them, but I was feeling desperate and they were cheap. Plus, it wasn't that bad--kind of cute, in fact. So we put them on him a few nights ago.

Sometimes it's so hard not to laugh at what Micah says, especially when he is serious but his actual words are funny. Because of his very restrictive diet, Micah has not had crackers for a long time. Then I figured out we could make our own crackers by baking thin slices of Parmesan cheese and serving them with some mayo on the side. They bake up nice and crunchy--a texture he doesn't have much these days. He had them for a snack the night he wore his new PJs, and he loved the cheesy taste. But they were gone too quickly and he was very insistent that he wanted more. But for some reason (maybe because he hasn't talked about crackers for a while) his request came out, "Crack! I want more crack! MORE CRACK, PLEASE!...yelling it over and over. David and I were trying very hard to keep from laughing, since he was so frustrated about getting his point across. So there he was, our little, innocent rock star, demanding his drug of choice--cheese CRACK(ers).

This is what he did when David asked him to stand still against the wall. And yes, if you look closely you can see his uvula, a la Mick Jagger.

Some Progress (we think)

In the past week or so we have had some better days. Micah is still having far too many seizures, but there are significantly fewer than we have seen in the past few months. We have had no days where he has had more than 50, which, for those of you who have kept up is way less than the 100-150 we were seeing. On Wednesday evening, we increased his fat to carb/protein ratio yet again to 4.25:1. He is still eating pretty well, but the number of dishes he is willing to eat is not very large. He eats pretty much the same thing every day: peanut butter (and coconut oil) and fruit/Greek yogurt/oil for breakfast, pizza for lunch and eggplant parmesan for supper. Eggplant is a great sponge for oil and it is low in carbs for the volume. We can sometimes sneak a different meal in to vary it so he doesn't get too tired of his options.

So, it's beginning to feel like it might be worth it to go through all this work. It is still hard, though. And we occasionally get a sad feeling about not being able to share our food with Micah. For example, tonight we will be having fresh, homemade pita bread and falafel with tahini sauce for supper. Micah would LOVE that meal, but it's just not in the plan.

We are hoping that this new increase will give us some better control. We met with our keto team a week ago in Chicago (dietitian, social worker, nurse practitioner). Though we didn't learn anything new (we didn't expect to), it was good to check in with them again. Micah's blood work all looked fine, with only one level bordering on too low, and there is a supplement for that if it drops further. We did learn for sure that there is only one more increase we can do after the current one. After 4.5:1 the child usually can't get enough protein from the diet to grow properly.

We are encouraged by what we have seen in the past week or so but we still want more improvement! Micah is happy these days and doing just what a two-year-old should--exploring everything. I had to call poison control last week when he climbed onto the piano bench to reach a little bottle of hair clipper oil that I had put there and forgotten about when I gave David and Micah haircuts. I was on the phone and when he was quiet for too long, I went to check on him. He was standing on the piano bench and chewing on this little bottle, with oil all over his hands and face. Now he is supposed to have lots of oil in his diet, but not petroleum distillate (DANGER: HARMFUL OR FATAL IF SWALLOWED, screamed the bottle). He seemed fine, but I called just in case. They reassured me that probably the worst thing that would happen would be vomiting, and that from the tiny bottle that he got into there was probably not enough to do any damage. And he was just fine--no ill effects. But it scared me!

He loves to play outside these days, and we can't go from car to house or vice versa without a sojourn to the back yard. This is fine with me! I am so glad that he enjoys being outdoors. He likes kicking the soccer ball around the yard, running, finding leaves and other random yard stuff, digging and raking, playing in the sand and riding on daddy's shoulders while giggling madly. As soon as we go to get him out of his car seat, he begins chanting, "Shoulders! I like shoulders. I like Daddy. I want shoulders", etc. I sometimes carry him, too, but Daddy has more stamina (it's tiring running around with almost 35 pounds on your shoulders).

All in all we're doing pretty well these days. Life has some semblance of its rhythm back, for which I am grateful. We are enjoying Micah very much at this adventurous age (minus the poison stuff, of course), and are grateful for even a bit of progress.

Haircut

I cut Micah's hair again a few days ago. I think this is his fourth "real" haircut (he has had more bang trims). I am always a bit sad when I cut his hair because his curls disappear for a while. Since his first haircut (I have typed "haircult" first every time--what's up with that?), his curls are really only evident just after a bath. But they are so sweet. As one with straight-as-a-board hair, I have always loved curls. But now he looks so much older, though still super-cute! He was so patient through the cut. I had to use scissors because the clippers tickled too much and made him wiggle and giggle. I'll post a picture when I get around to it.

Where everybody knows my name

You guessed it: the pharmacy. We got a new pharmacist a few weeks ago at the CVS where we do business, and she already knows who I am and is getting my stuff ready by the time I get to the counter. It's kind of nice and kind of depressing. It means I am in there far too much! Micah is on 4 prescriptions right now (and a fifth for an emergency medicine that we have never had to use yet), and since we have started the keto diet, we have had to change to some sugar-free versions instead of the traditional, so it has meant even more trips to the pharmacy. I feel very comfortable there, now. I know what to do, who to ask for help for which questions (the meds themselves, insurance, etc). I remember going in a few years ago for some routine antibiotic for myself and I kind of felt nervous! Did I have the right paperwork? How long would I have to wait? Now I'm an pro. I know when to go when they won't be as busy. They have been great in all this (except that they don't carry the kind of syringe caps that I like).

As for how Micah is doing, nothing much has changed. He is still having too many seizures every day (usually between 40 and 70), though that is some lower than it had been. He's also on a temporary medicine after a spike about two weeks ago, so it could be that that is helping reduce them a bit. In any case, it's hard not to get discouraged when we were hoping for better results by now. We just increased his fat to carb + protein ratio to 4:1 a week ago, so we have to give that time to settle in.

He's been kind of naughty lately, too. Is it him being two? Or is it the temporary medicine? Or is it us not being firm enough? In any case, I'm tired of it! He had a bit of a cold and an eye infection last week. That probably played a role too.

But the biggest challenge right now is that he has stopped wanting to eat. We can't tell if he just doesn't want to eat the food we prepare, or if he's genuinely not hungry. One comforting thought is that he doesn't ask for food between meals. I figure that he will eat if he's truly hungry. This morning he refused chocolate pancakes--I mean, come on! What's wrong with that? The dietitian reminded us to be patient and to just feed him snack portions if that works better. So we'll try to be patient. It hasn't seemed to make a difference in either direction as far as seizures are concerned.

We have some new meals to try that have been approved by the dietitian, so we'll keep trying.

We continue to pray for healing for our little boy.

Neighborhood Watch

Lately Micah has spent a lot of time looking out the windows of his bedroom (he has three windows in three directions, all about 8 inches from the floor, so it's handy). The problem is that he should be sleeping. He continues to be a great sleeper--usually about 12 hours straight at night. But occasionally he will wake up about an hour after going to bed and want to spend some time looking outside. We'll hear him get out of bed through the monitor, and when we go up to put him back into bed, he's kneeling on the floor and looking out at the neighborhood. He likes to watch the cars drive past, and look at the streetlights. Sometimes it's one window and sometimes another. He's not fussy, or upset. He's just not sleeping. Fortunately it doesn't happen every night and he is so sweet and cuddly and happy to see us when we go up to put him back into bed. That hour-long "nap" just seems to make bed seem redundant.

Today was not a good day, seizure-wise. We increased his ketogenic ratio to 3.5:1, up from 3:1, on Friday afternoon, so we have been hoping to see an improvement. But it hasn't come yet. We will be doing this new ratio for at least two weeks before we know whether it will work or not, so I'm trying to be patient. Then we'll try 4:1. But days like today are just demoralizing--Micah had the highest seizure and cluster totals (by quite a bit) that we have seen so far. GRRR!

David's parents are here visiting and it has been great to have them spend some time with us. Micah has been over the moon! He always wants to know "where's Grandpa?" It has been helpful to have him distracted, and David and I enjoyed a lovely meal at Kelly Jae's last night while they babysat (actually, Micah was asleep the whole time we were gone, so it wasn't too strenuous). So we are trying to take care of ourselves, too.

Micah continues to eat well, for which we are grateful. Still, we are hoping and praying for a better day tomorrow.

Taking a Sabbatical

Not from work, but from counting seizures. I woke up this morning and decided that I would take the day off. Recording every seizure and watching the tally grow and grow, despite the diet, has been depressing to say the least. It wasn't helping anything, and it was getting in the way of interacting normally with Micah.

And it was a great day! Yes, he still had a lot of seizures, but I don't have any idea how many. This afternoon seemed much better than previous ones. Maybe there were fewer seizures, or maybe I just wasn't obsessing about every single one. When he'd have a cluster, I'd deal with it and then we'd move right on with whatever we had been doing. Instead of focusing on the pathology of the seizures, I was able to just be with my boy.

Yes, we'll go back to counting on Wednesday (David is home with Micah while I work tomorrow as usual on Tuesdays and will also be taking a day off). It is important that we have all that data, but a day or two here and there won't matter and it just might keep us sane.

We were in contact with our keto team today, and will be increasing Micah's ratio from 3:1 (fat to carb/protein) to 3.5:1. We'll try that for at least two weeks and then see where we are. If that hasn't helped enough, we'll increase to 4:1. So we have some room to go. Some children just need a high ratio--we hope Micah is one of them. Changing the ratio means that we will have revamped recipes (created by our dietitian).

I am grateful for a good day, for a team of folks who really know what they're doing, and for the sunshine!

Ups and Downs

It has been an up-and-down week. We have had good days, bad days, and some that were in between. Micah continues to eat well, and takes his medicine reliably. But he's still having way too many seizures most of the time. It is frustrating and discouraging, but we are trying to stay hopeful.

We have been enjoying the snow (I know, that seems strange to many of you). We went sledding and snowshoeing on Tuesday, and played in the yard other days. Today the snow was finally conducive to attempting a snowman. Poor snowman; Micah liked knocking it down more than building it up. So now it is lying down rather than standing up. We'll just say it's "sleeping".

We have been so thankful for the meals that several people have brought! Not only have they been delicious, but they have meant that David and I can both prepare Micah's food and also eat well ourselves--thank you, thank you, thank you! We are getting better at the food prep thing, but it still takes a long time to measure everything out exactly and follow all the instructions for cooking. We will keep getting faster, and once we know for sure what ratio we are on, we can do more batching and freezing.

We will be in contact with the doctor and dietitian in Chicago on Monday, and it is likely that we will increase Micah's ratio from 3:1 to something higher than that. Or we may need to wait some more on the ratio we're already using. We'll just see what they say!

Micah went back to daycare this week, for just a little while on Wednesday and Thursday. He was there for only one meal, and we sent his food with him (blueberry pancakes both days--a favorite, and very easy to eat). He ate all his food, didn't seem bothered by the other children having different food, and seemed to have a good time. We'll keep working up to his full 5 hours those days over the next week or two.

I plan to head back to work at least some this next week. I look forward to getting out of the house and thinking about something other than the difficulties we are having right now. Sunnyside has been very gracious in granting me the time we have needed to get this diet started.

Micah is looking forward to going to church tomorrow. He was asking to go today. So even though he will not be able to have pretzels in the nursery, he will still have his friends Oliver, Carter, Deborah, Mia, and even Ella who is back for a visit! Good times for a social child.

The wa-ai-ting is the hardest part

We're still waiting. Micah's seizures have not abated as far as we can tell. We knew going into this process that you just can't predict how quickly or well this diet treatment will work in any given child. But we had, of course hoped that it would work well and right away for Micah.

The word from the doctor and dietitian on Monday was, "please try to be patient." I'm trying! But sometimes a cold sweat comes over me just thinking about Micah's future if this diet doesn't work. It's so hard to stay hopeful in the face of this seemingly insurmountable problem. God has been telling me the same thing as the folks at the Epilepsy Center. Throughout the past 8 months the words that come to me when I pray are "be patient". I thought maybe I just had to be patient until we started this diet, but things are not resolving quickly.

This doesn't mean that this treatment won't ultimately work for Micah. We have weaned him quickly from one of his medicines, and he had so much trouble taking another one for several days that we aren't sure how much of it he actually consumed. These sudden changes can cause seizures to worsen. So, we just need to keep waiting, and we continue to pray for something good to happen soon.

Still Slogging Through

We've been home for three days now, and while it feels really good to be here, this diet is a LOT of work when we are the ones who actually have to weigh everything.

Here are a few more photos from our stay in the hospital. Micah spent much of the time there sleeping.

Here he is sleeping in his big-boy hospital bed.

We finally figured out that he ate better in the lounge than in his room.

My parents came to be with us while we were in the hospital.

Yummy, yummy hospital food! This was a typical meal he ate while we were there.

Starting from the top and going clockwise: 

mayonnaise, heavy cream, applesauce, sour cream, more heavy whipping cream.

We had fun there, too. Here he is playing in the lounge with Grandma and Grandpa.

We have discovered that Micah just will not eat the cream that is a big part of this diet (as you can see from the photos). He is now suspicious of any white, creamy stuff. He never has been willing to drink milk, and so he won't drink the cream, either. Some kids mix it with water and do drink it.

We do have other options, they're just more labor intensive. We have something called KetoCal, which is a supplement balanced for the ketogenic diet and can be used as a sort of flour to bake and cook with. It looks and smells like baby formula, and children who are not eating solid food or who are tube-fed do use it like formula.

KetoCal allows him to have pancakes for breakfast and pizza for supper and still be on the diet. Another thing we've discovered is shirataki linguine noodles, which are made of tofu. We can get them at Meijer, and they come packed in water. You drain and parboil them and then use them like regular pasta. He had "macaroni" and cheese for supper last night (cream, cheese, butter, shredded carrots and cut-up shirataki pasta). He ate it up, but the pasta portion was a bit skimpy. We'll increase that next time he has it and he will enjoy it more, I think.

KetoCal is great for Micah's eating, but it takes a long time to prepare his food. On Friday night I made pizza for him, one to eat then and two for the freezer. Each approximately 5-inch pizza is a complete meal in itself.  It probably took an hour and a half to make. Worth it, but it makes food prep a whole new thing. It kind of feels like we have to choose between cooking for ourselves and cooking for Micah. So we've been eating catch-as-catch-can. That's ok for now, and I'm sure we'll settle into more of a rhythm. In some ways it feels like it felt when we had just brought Micah home after he was born--so much of our energy goes into his eating.

Admiring our handiwork; Micah is ready to eat.

A close up; nice and greasy!

Here he is eating some blueberry pancakes. They also went down easily!

More, please.

What makes it harder is that he's not having noticeably fewer seizures yet. We don't know if or when that might change, but it feels like it needs to happen soon. It has been almost a week now, and we're ready for something to change.

One thing that might be contributing to it is that he has not been able to take his medicines consistently. We have tried many things, but they keep coming back up. The reason is that he has to take the carb-free versions of things, and for one of the meds, that means crushing some very bitter pills and getting them into him. But they make him gag. And it is pretty bad, I must say, after having tasted just a bit. So, we've resigned ourselves to him taking the sugared version for a bit, so he at least gets it into his system. All the meds went down well with minimal complaining and no gagging tonight; that is a victory!

So we continue to wait. We'll probably be tweaking the ratio this week, increasing the fat to carb/protein. We are all sleeping well, and Micah's energy is back for the most part. He napped only his usual half-hour again today. David and I are eating leftovers and pre-packaged food these days--we have to decide between cooking for us and cooking for Micah sometimes, which is totally fine.

We're all ready for this to settle into some kind of normalcy. And that will come with time, just like it did when Micah was first born.