Wednesday, December 29, 2010

Merry Christmas To Us

Collin isn't much of a shopper, but he is a very generous gift-giver. This Christmas, our present was that he held a toy in his hand for the FIRST TIME EVER. One of the toys he got for Christmas vibrates and when we put it in his hand, his fingers closed right around it. It seemed pretty firm, so I supported his arm and took my hand away just for kicks...and there it stayed! Like a torch of awesomeness!

I think that might have beat the iPad he got.

Tuesday, December 14, 2010

Hold On To Your Butts

Here is just a TASTE of what Collin has recently decided he can do.

PS - That's not a ghost in the background. Kyle figured out that if he makes a scary siren sound, it motivates Collin to move. Sort of like he's thinking, 'Cheese it! It's the cops!' and makes a break for it.

The Beginning of Greatness from Annie Kratzsch on Vimeo.

Saturday, December 11, 2010

The Sick House

Important to understand: Illness is a big deal in any home, in that it disrupts life and just makes you feel yucky, but it is an especially big deal at our house. First, there's Collin's care: there are no breaks. I can't just ask a friend to watch Collin for the afternoon while I recover. Between the g-tube feeding and the ketogenic diet and the countless little things that you don't even think about when you do it every day, it takes a highly trained person to care for Collin. Outside of me and Kyle, there are maybe 3 people who could do it (a big improvement, actually!). Second, there's the fact that an illness to Collin has the potential to become something much more than just a little cold or tummy bug. With his low tone, he can't 'manage his secretions' as the doctors and therapists say, or cough enough to keep his lungs clear. His Nissen wrap prevents him from throwing up and when he tries, he can't catch his breath (see our hospital stay this past January). Pain, discomfort, and sickness mess with ketones and compromise his seizure threshold. No matter what the virus, it's not a road we want to go down.

Also good to know: My germ paranoia was born in the NICU of our children's hospital. The second day of Collin's first hospital stay, a nurse gestured around the room at all of the babies with their tubes and their boxes and their hollow-eyed parents and said, "If you came in here with RSV on your hands, you could kill any baby in this room." She then went on to explain that I would never be able to know if I was carrying RSV - I may have cold symptoms or no symptoms at all. Great advice for a scared and anxious new mother.

I guess this particular episode started with overdoing it around the Thanksgiving holiday: too much unnecessary stress and work, too many fun things I should have said no to, too little sleep. So I ended up coming down with a respiratory virus of some sort on the day after Thanksgiving, complete with a racking cough that I just couldn't shake. After a full 9 days of that, I hurt my back during a coughing fit. And then, for good measure, Kyle somehow came down with an awful stomach bug. I didn't sleep at all that night, between worrying about him, about whether my own sickness was turning into something worse or if I would get the stomach bug, and about whether we could keep the germs away from Collin. I formed a disinfecting strategy.

Sometimes when these perfect storms blow up in which too much happens at once and I feel like options are running out and that one more bad thing would be the proverbial last straw, I get what I call PPD flashbacks. It's like my body and/or brain remembers again what it's like to be paralyzed by fear, so it throws in some symptoms to make things more realistic: weakness, exhaustion, loss of appetite, etc. My vision gets clouded by 'what if?'s and my sleep is full of dreams that happen in deep water. I have to treat it kind of like a major flu (lots of rest, liquids, good food) plus a regular dose of talking, reasoning, praying, and just waiting for more time to pass between the present moment and the day(s) that started the whole thing off. THANK GOD my mom was able to come help us with Collin for the week so that I could concentrate on getting well.

And somewhere in the middle of all this, I evidently had my 31st birthday.

Thursday, November 25, 2010

Happy Thanksgiving

From our turkeys to yours.

Monday, November 22, 2010

Introducing: MOOM

Everyone except the cross country team dreaded high school fitness test, mostly because of the mile run. That's because a mile is a far way to go, especially when you're not used to running.

A milestone is just a marker along a road that shows you that you've gone another mile since the last marker; it shows you your progress, and how far you still have to go. In developmental terms, a milestone is a marker as well, showing that a child is attaining important functional skills: sitting up, rolling over, grasping and releasing, tracking, babbling. It's not just about hitting these milestones, though - there is a timeline attached. The idea is for your child to attain a particular milestone at the same time most other children reach it - or, preferably, before. That's because there is an understanding that we can get a picture of our child's brain as they reach milestones. If he sits up 'on time', we feel assured that everything is okay. If she rolls early, we're sure she is advanced. If he doesn't have enough words at the right age, we might feel a little anxious and defensive and try to convince ourselves that it will work itself out. Some of this is silly and externally influenced. Some of it is deep and internal, though.

With all of the focus on hitting milestones on time (or, in our case, ever hitting them at all), it can be easy to forget how miraculous they are. It means that another whole mile is behind us and so every mile ahead will be different now.

But, like I said, when you're not used to running, a mile is a far way to go. And Collin Francis is not a runner at this point. He is the proverbial Tortoise and ultra slow is his pace of choice. There are good and bad sides to this. The bad side is that a mile feels more like a thousand miles at an ultra slow pace. It feels like you will never get there and even though you're going the same distance regardless, it somehow feels more exhausting. The good side is that any pace at all means progress. Also, you see a lot of things at ultra slow pace that you might whiz past otherwise. Being able to savor these mini-milestones is what you might call an unexpected blessing. You kind of forget how close you are to the wrong end of the spectrum of development. Things get a little less linear and a little more organic and you feel almost exempt from other people's timelines.

So, we're starting a new feature here at Collin the Champ, called MOOM - Making Our Own Milestones. We're going to take time to hold up the mini milestones and celebrate them the way they deserve to be celebrated. We've probably actually been observing this tradition for a while but I like to make things official; it means cheesy names and numbered lists.

This week's MOOM:
1. Collin sat in his Bumbo seat unassisted for the first time. Like I said on Twitter, it was brief, but beautiful. There is a different kind of sadness that comes with having baby gear that never gets used. All of my memories of Collin sitting in the Bumbo happened when he was on seizure meds, which meant that he was beside himself with irritability and his head was still flopping straight to his chest. It was like a little dream come true when we squished Collin's booty into that seat and he instinctively held his head up. It was almost weird seeing it wobbling around out in the open air all by itself. (That's a red star sticker on his nose - therapies always overlap here.)


2. Collin bounced in his bouncer chair. This is a very similar MOOM to number one, as it involves forsaken baby gear and unexpected success. His movements were small, but undeniable.






3. Collin rode in the seat of a grocery cart for a first time. I don't know what it was about this one, but it buoyed my spirit like few other things have done. Maybe it was from all of the frustrating trips to the store when I just couldn't do what I needed to do because I had no options. Having him close to my face, smiling and kicking like all the other kids was truly magical.

Numbers 2 and 3 are thanks to our new favorite thing: the HuggaBebe. It basically works by making a Collin sandwich, which gives his trunk the support he needs to be able to focus on holding up his head. Definitely the best $30 I've spent in a long time.

Stay tuned for many MOOMs to come!

Thursday, November 18, 2010

Wednesday, November 10, 2010

Gift

Today is my second favorite day of the year: Kyle's birthday (a not-so-close second to Christmas Eve). The only bad thing about Kyle's birthday is coming up with a birthday present. Mostly because he doesn't like anything. And what he does like he doesn't trust anyone else to get for him. And anyone spending money makes him sick to his stomach.

Last year, I kicked major butt with Collin's first music video (There was also this one later. I think we may be due for another one soon.)

This year, Collin and I collaborated a little more equally and got Kyle...suspenseful moment of silence...Collin's first ever drawing.

It was no small feat and involved socks on the hands, tiny markers, packing tape, and elbow props, but it was pretty darn magical to watch and I think we enjoyed making it almost as much as Kyle enjoyed hanging it on the fridge.

Tuesday, November 9, 2010

A Boy Through and Through

Thank you, Burp and Fart Piano, for the perfect end to a Tuesday.

Such a Boy from Annie Kratzsch on Vimeo.

Monday, November 8, 2010

Reconciliation

A dear friend of mine wrote today and summed up beautifully the struggle I have felt recently. She said: "I am so thankful things seem to be going so well for you all lately, but I know that it still is hard and you still have so many struggles."

I am literally awed by the blessings we've enjoyed over these past months. Collin hasn't had an identifiable seizure in almost 5 months. We didn't think that would be possible. He laughs every day. Lots of times. At consistent stimuli. He is moving his whole body with more purpose. He is using his vision. He is making more and more sounds and responding to particular words. He cries - loudly - when he's unhappy and is comforted in my arms. He continues to surprise me with the things I didn't know he knows. There are many times every week when I feel all giddy and ridiculous with happiness because I am so crazy about Collin.

But then there are also all of those times when the therapy I've been doing for weeks or months doesn't seem to be making a dent in his challenge. When I'm getting him in or out of the car for the 12th time that day and he is a limp noodle and can't give me any help out of the carseat or into the stroller and I have to close my eyes for a moment to breathe out the momentary frustration and all of the deeper frustrations pushing up under it. When people around me who I love so much watch their children breeze through milestone after milestone or go on to have more children without concern about genetic issues - and while my heart swells with happiness for them I feel more acutely the reality of our own situation. I have these kinds of moments -- when the weight feels heavy or the task seems huge, when an insensitive word pierces or another treatment or challenge gets added to the mix -- and it all just feels so hard. But I'm still intensely aware of all of those awe-inspiring, excitement-inducing things going on at the same time, so I feel ashamed of being weary or discouraged.

But the truth is, as my friend explained, things are going so well for us and we do still have so many struggles. It's not all one way or the other, and I'm actually grateful for that. That's why, when people offer encouragement about Collin's progress, I want to say, "Yes, but it's so hard for him in other ways," and when people offer empathy about the difficulty of our life, I want to say, "Yes, but look how far he's come and how amazing he is." Somehow, just the acknowledgement of this complexity makes reconciling the two sides so much easier.

Friday, November 5, 2010

Water Baby

As many of you know, I can't say enough about the miracles aquatherapy has worked for Collin. Here's a little taste of why I'm so passionate about it.

It's kind of hard to hear the therapist (who supports him in the water, but doesn't help him or give him any cues), but the first thing she says is "Roll over, Collin. Roll all the way to your tummy." And then she tells him to sit up and show Mommy how he holds his head up. At that point, everyone in the pool starts cheering and Collin gets his favorite reward: going fast in the water.

Untitled from Annie Kratzsch on Vimeo.

Sunday, October 24, 2010

Grand Slam

Wednesday night, Collin went trick-or-treating at the Zoo Halloween Party and dressed up as a baseball player. His costume was a huge hit and he really enjoyed the whole experience. When we were filming our traditional State of the Candy address, we took a minute to recreate Collin's favorite part of the night.

Halloween Disco from Annie Kratzsch on Vimeo.

On Overdoing It

This week taught me that I still have a lot to learn about maintaining a feasible schedule in our home. Aside from three doctors appointments for me, having friends over to our house, and the typical everyday paperwork, phone calls, ketogenic diet preparation, therapy work, and the fact that he (and, therefore, Mama) was sleeping very poorly, here is what Collin's week looked like:

Monday: Collin did a great job in his vital stim therapy and showed signs of faster swallowing. He still has coordination issues that make him freak out whenever a spoon or bottle enters his mouth. He also spent time with his new speech therapist for the first time, who will be working on feeding and language with Collin. She proposed some new strategies - mainly to support and strengthen Collin's respiratory muscles - and was very helpful and encouraging about our struggle to teach Collin to eat.

Tuesday: We visited Cincinnati for Collin's quarterly NACD evaluation. Bob Doman was once again pleased with Collin's improvements, particularly his quick responses and interaction. I haven't had time to sit down and look through our new program in detail yet, but it looks like it includes a few new activities to support feeding, cause and effect, and rolling.

Wednesday: A great session with Collin's OT confirmed our decision to focus on his respiratory muscles for a while and then a marathon poop session kept us home from play group. That night, Collin went trick-or-treating with his cousin Ila at the Zoo Halloween Party. More on this later.

Thursday: Collin's chiropractor and cranio sacral therapist both had great sessions with Collin and gave us even more ways to support his respiratory muscles, including exercises and taping methods (think athletic tape). He went straight to aquatherapy, where he wowed the crowd with incredible head control, kicking, trunk control, and especially his ability to follow verbal commands. We're really working on 'yes' and 'no' with Collin in the water, as well as starting to make choices.

Friday: This is the day that broke me in terms of stress. We were lucky to get moved up by more than a month for Collin's growth hormone stimulation test. It was explained to me as an easy test that would take a few hours, so I should bring something to read because it might be boring. Ha. Ha ha. For the sake of your stress level and mine, I won't relay all of the gory details, but Collin basically complicated every aspect of the test with his practically-impossible veins and his ketogenic diet. The test is a very precise one that requires blood samples and drug administration at very specific times and the nurses had trouble handling all of the complications. The result involved a squeezed and meddled-with but useless IV line, five pricked and squeezed fingers, multiple last minute calls to the endocrinologist, and ultimately a Collin who was so scared and in pain and worked up that he was rigid with unconsolable screaming and crying. This from a kid who stopped crying at four months old and has only recently started crying a bit when he's uncomfortable. The whole experience was unnerving at the least and slightly traumatic at the worst. Then, in my infinite wisdom, I had scheduled an ENT consult for the afternoon, thinking that our morning test would be so easy. It was a fairly uneventful visit aside from the fact that Collin still hadn't recovered from that morning. I liked the doctor and we decided that the best thing is to leave his tonsils and adenoids alone for now and see what happens in the next six months.

So. Lots of good things, new things, helpful things. Some bad things. But generally just way too many things. Every once in a while, I think I forget the whole sprint versus marathon analogy and end up having to temporarily stop the race altogether while I sit by the road recovering and trying not to throw up from over exertion.

Friday, October 15, 2010

Baby Einstein

I take back all the snooty things I ever said about Baby Einstein.

Baby Beethoven from Annie Kratzsch on Vimeo.

Sunday, October 10, 2010

Behind

So, what happens is this:

We have a few busy days -- lots of appointments, phone calls, new developments -- and either I'm exhausted or processing or whathaveyou, so I put off posting about it. But then another few days just like the first few happen and by that point, even if I'm not exhausted, I'm overwhelmed by how much I have to explain, so I put it off some more. And weeks go by and I have people contacting me asking if something's wrong.

In lieu of a detailed explanation, allow me to sum up and get us more or less caught up.

1. Sleep: Collin has started oxygen at night and during his naps if we're at home. It seems to have made a pretty big difference in his sleep overall, though it still takes him quite a while to get to sleep most nights. We had a debacle involving Dr. Snarky wanting to put Collin on caffeine citrate for his periodic breathing. It definitely fixed the issue, but it did it by never letting him fall asleep. As in, all night. Imagine a 19-month old on a double shot espresso. It took us three days to get him back to normal. Next step is to do another sleep study in a couple of weeks. Gag.

2. Ketones: We wrestled with Collin's ketones for weeks, sometimes having to bring them down with juice three times a day to get him to snap out of his high-ketone daze. Finally, after calls and emails to 2 neurologists, 3 dieticians, and numerous other keto parents, we pieced together bits of information and cut his carnitine in half for a few days and everything righted itself. And I will take this opportunity to quietly point out that I KNEW IT. The spreadsheet doesn't lie, people. (I really will remember to post on Collin's massive health spreadsheet one of these days.)

3. Michelle P Help: Our two Michelle P helpers have been working for 3 weeks now and we're all getting more used to the arrangement. They are both so wonderful with Collin and love him. Collin gets to go through his NACD program even more than normal and I am feeling less like I'm fighting a losing battle against paperwork and our house.

4. Development: This section is also known as the land of capital letters. COLLIN PICKED UP HIS HEAD WHILE LAYING ON HIS TUMMY FOR THE FIRST TIME. COLLIN TOUCHED SOMEONE'S FACE ON COMAND TWICE. COLLIN IS SOMEWHAT CONSISTENTLY LOOKING FOR KYLE AND I WHEN WE SPEAK. COLLIN IS MAKING NEW SOUNDS. COLLIN IS STARTING TO PLAY WITH TOYS WHEN SUPPORTED IN HIS NEW CHAIR.

And that pretty much brings us up to date. I will try my darnedest not to let it get to this point again. I have also jumped back on the Twitter wagon to take off some of the pressure to do an entire post for every new thing.

Sunday, September 26, 2010

Sleep and Snarky

Thursday morning, Collin and I went to get the results of his sleep study from Dr. Snarky. I honestly had no idea what to expect, but was still surprised to learn that Collin has a lot of sleep apnea. I mean, a LOT. Like 28 apneas an hour on average. A few are obstructive apneas (like when people are snoring and do that scary sucking sound and you're afraid they won't breathe again) due to his low tone letting his airway collapse, but most are central apneas, meaning that Collin's brain is not effectively telling him to continue breathing. Not good. In addition, his oxygen saturation is very low at night, rarely staying above the preferred 94% and sometimes dipping into the 60s. Also not good.

Our options for fixing this are limited and not encouraging. The first thing to try was to repeat the sleep study exactly as before, but adding some oxygen. The hope would be that this would fix some of Collin's apnea and correct his low oxygen saturation. However, it ran the risk of taking away his brain's drive to breathe and consequently his ability to get rid of carbon dioxide. So, even though he would have enough oxygen, he would slowly accumulate carbon dioxide which could potentially result in brain damage if it got too high. Not what we need. If that's how Collin reacted, oxygen wouldn't be an option. The other options include surgery to remove adenoids and tonsils in the hopes of making his airway roomier - a big risk for a kid with seizures - and bi-pap or c-pap machines which work well for some people but pose major risks to a kid with low tone, retching problems, and a history of aspiration.

So, when we went into our sleep study Thursday night (we were lucky enough to get in that very night), I was more that a little nervous. It felt like if this didn't work, we had nowhere to go. Collin ended up sleeping quite well compared to his first study despite all the normal wires plus an additional oxygen mask, but I woke up at two in the morning and watched his CO2 monitor for 4 hours, thinking and praying all the while.

One of the things I thought about during these long, dark hours, was a conversation I had had with Dr. Snarky that morning. Now, I should preface this by saying that the doctor and I have come to a better understanding of each other and there is a seed of respect growing there. I doubt we'll ever be best buds, but at least we can speak openly with each other. During our conversation, I was pressing him with lots of 'what if' questions - what if this doesn't work? what if we try something else? what if we don't treat the issue at all? He stopped and became uncharacteristically somber and said, "Given everything, what have you been told about Collin?" It took me a second to figure out what he meant, and when I did, I didn't know what to say. He was asking about Collin's prognosis. Would he talk? Would he walk? When I didn't answer right away, he tried to elaborate by saying, "Collin is special," in a way that made it clear that he didn't mean special in an attractive way - not a special he would choose for his own grandchildren, "and for special kids, quality of life is number one." What did that even mean? Is that not true for all children? And then I realized that his first question had meant even more than I had interpreted. He was asking me to consider how much was 'worth' doing in this situation. In the Collin situation. When I haven't even been given a life expectancy (his words), when I don't even know if he will ever learn to do anything 'normal' people do (my words). How much effort does one expend in a situation like that? And for some reason I don't understand, I did not get angry. I just said, "No one has told us anything about Collin, because no one knows. And so we plan to do everything we can to make it possible for him to do everything he can." Dr. Snarky almost smiled -- it was either at this point or during my pushy questioning that he decided I was okay -- and said, "Okay, then. We need to get his sleep fixed."

Anyway. I was thankful and pleasantly surprised when Dr. Snarky called me the next afternoon to let me know the results of the study, knowing how anxious I was about it. The oxygen worked in that it dramatically improved Collin's sleep, his apneas, and his oxygen saturation. It didn't fix everything, but I will hear the full report at our follow-up Tuesday morning. I was simultaneously incredibly relieved and slightly sad. It has been so great having this time during which Collin wasn't depending on any machines (since the feeding pump left our house a few months ago). Knowing that there is another intervention we will need to learn and monitor is a little hard. I'm sure we'll be used to it in no time and there's nothing we wouldn't do to make things better for Collin, but it's just tough adding new problems and their solutions to an already complicated daily life.

Sunday, September 19, 2010

Hit the Ground Running

I had intended for our first week back from vacation to be fairly calm to help with the transition, but somehow it got away from me and ended up being packed and exhausting. We started Monday morning with our sleep medicine consult. I originally thought I was going to refer to our doctor as Dr. Grouchface, but instead I have settled on Dr. Snarky. He started off our appointment by asking me to switch seats because he prefers to sit where I was sitting. At first, I thought he was joking, but I was wrong. The rest of the appointment was also one long, unsuccessful attempt to tell when and whether he was joking. I did end up getting enough real information to determine that I thought the sleep study would be worthwhile and was a little surprised when they had a spot for us two days later. So, Wednesday night was our night. I was fairly sure it would be pretty smooth, because we would both be there with Collin, in a private room with no alarms and no interruptions.

Now someone, please please please, explain to me how you're supposed to get anything close to an accurate representation of a normal night's sleep in this get-up. I'm serious. The minute they tried to stick in that nasal canula, it was all over for Collin's sleep and the "mittens" (otherwise known as arm restraints that don't require you to strap your child to the bed) they put on him to keep him from pulling it out sealed the deal. He did not sleep. Which means we didn't either. And, of course, during the brief moments when we would all drift off from sheer exhaustion, one of the supposedly nonexistent alarms would go off or the nurse would come in to force the canula back into Collin's nostrils. Collin was so out of sorts the next morning that he was crying while they peeled off all of his probes and then feel asleep immediately afterward and slept all the way through the bloodwork he had to have at the hospital that morning, just to spite the sleep study people.

It took us a while to recover from that night, but Collin still did great during his aquatherapy session Thursday (rolled over and sat up on command!) and we're setting all kinds of exciting goals for him over the next 6 months.

Also, Collin's fancy-schmance chair finally came in this week after being hung up in German customs for several weeks. It is fully adjustable and high tech and I'm sure it will be wonderful for him...once we figure out how to use it.

This week is full of appointments (including a follow-up with Dr. Snarky to get the results of what we're calling the Sleepless Study) and therapies. But the thing we're looking forward to most is that we have finally hired help with our Michelle P waiver money and we have two fantastic ladies starting this week. I will be having help Tuesday and Thursday mornings and a few hours Monday-Thursday afternoon. It will be a bit of an adjustment, but I think it is going to be so good for all of us.

Monday, September 13, 2010

Vacay

We just got back from a week of medicine-like goodness. We spent 7 beautiful days in a beach house on Hilton Head Island with my family and even though I already knew I was burnt out, I don't think I had realized just how much we needed a week off. The trip was the perfect balance of rest and exercise, fun and relaxation, eating out and staying in, having alone time and visiting with family. Other than some super-high-ketone issues, a reaction to the sunscreen, and a slightly leaky button, everything was remarkably smooth with Collin. He loved the ocean and the pool, but was pretty indifferent to the sand. He really seemed to enjoy the break and the new experiences, but he is also glad to be home.








Wednesday, September 1, 2010

Overwhelmed

I took Collin to school this morning and we hadn't been there long when the neurologist's office called. I left Collin with his teacher and excused myself to the hallway, because I knew it was going to be about the MRI and I wanted a minute to myself just in case. We've never had good luck with MRIs. Collin's first MRI was incorrectly read as normal, his second one showed low white matter, and his third, in January, showed a possible decrease in white matter from the previous one. This MRI was to determine whether we were facing further degeneration. We were praying that no change had taken place.

Change had occurred, though. For the better. Turns out, Collin's brain has started myelinating faster, which means that his white matter has INCREASED. Not decreased. Not held steady. Increased. Apparently, Dr. Awesome said that the MRI 'looked pretty good,' which, as you know, is comparable to someone else doing a big elbow-flapping happy dance.

We also had done an MRI of the lumbar spine because Collin was born with a fairly deep sacral dimple and there has always been question as to whether he has a tethered spinal cord, which would likely mean surgery at age 2 or 3 to 'release' the end of the spine. That MRI came back completely normal.

I went back in to the classroom and just sat there feeling completely overwhelmed with thankfulness. I was surrounded by all of these amazing moms and their sweet children in a place where Collin feels welcome and free to try things and I had this huge, glowing, happy news I was carrying around.

It's true that, in a classroom of children with various disabilities, Collin was by far the most delayed. Even though Collin's MRI is improved, it's nowhere near normal. I know that our situation would not be one anyone would choose. If I had been able to imagine that moment in the classroom back when I was pregnant or before, I would have found the very thought abhorrent and terrifying. And I guess that that's when it hit me that this is one of the biggest ways that all of our prayers for help these past couple of years have been answered. Nothing circumstantial was taken away - no hardship magically disappeared. But God spent these months reworking our hearts to bring us to the point where, instead of raging that we even have to worry about EEGs and MRIs or lamenting that Collin needs to go to a school for the visually impaired, we can truly experience contentment and gratefulness in our situation. Not to say we don't still have bad days or weeks. We do. But I'm guessing this is what it means in the bible when it promises that God will work out all things for the good of those who believe in Him - who keep looking for him even when it makes no sense or feels pointless. Not that everything will be smooth or that you will prosper in the way you hope/expect (coughJoelOsteencough). But that when things do go wrong, even very very wrong, it won't mean destruction via despair or pain. It will signal the beginning of beautiful things - maybe tough and unexpected, but beautiful nonetheless.

Tuesday, August 31, 2010

Stampede Success

The Stampede for VIPS 5K was a big success all around this weekend. I completed my first 5K run, Collin walked the course with Kyle, and Cousin Ila even got to walk the final lap with her mom. It was a little on the hot side and there was almost no shade on the course, but it was fun to run on the track at Churchill Downs and the volunteers were very friendly and encouraging all along the way. Best of all, Collin raised 112% of his fundraising goal! A huge thank you to all who so generously helped us raise money for Collin's school! He'll be sending out thank you notes soon. ;-)

An interesting part of the race was that they supplied a Krispy Kreme donut cart where you could build your own donut after finishing the race. The very thought made me a little pukey and the ketogenic diet (and mama) won't allow donuts for Collin, but he did get something just as good.

Monday, August 30, 2010

Quote From Collin's Cardiologist

"The bad news is for me today. Collin won't be coming back anymore. All of the holes have closed and his heart is completely normal."

Whooopeeeeeeee! One less doctor!

The only bad things that happened during the appointment was that I saw that his 2 year molars have started coming in on the bottom. WHAT?! We're still battling the premolars! This kid is a teething overachiever.

Friday, August 27, 2010

Say What?!

We've had a busy couple of days here, folks. The next time you see me starting to plan a week like this one, somebody please shake me. I am so serious.

So, yesterday morning was Collin's sleep-deprived EEG and neurology appointment. It had been 6 months since our last EEG - a major record - and the first EEG since starting the ketogenic diet. I was nervous, I'll be honest. Even when things are going well, I have this lurking fear that I'm going to show up to a test or appointment and they will say, 'Surprise! You're imagining things! Something really bad is going on that you couldn't even see."

Anyway. With an EEG appointment of 8:30am, that means a wake-up time of something way, way earlier than that and then hours of making sure Collin doesn't fall asleep. By the time we got there, the poor guy was so hungry and tired that he was half crying, half moaning in the waiting room. He performed beautifully, though, falling asleep on cue, waking up on command (with a smile, no less) and not thrashing in his sleep too much. I had vowed that I was going to sleep in the chair with him and not look at the computer screen, but it didn't work out that way. It was more like my eyes never left the screen, much less closed. My friend Cristina takes a picture of most of her son's EEG screens, and I kind of wish I had. I knew I was seeing something, but I just wasn't sure what.

Our actual neurology appointment wasn't for another 3 hours, but Dr. Awesome was kind enough to work us in right away. (As the lovely EEG tech said before she asked on our behalf, "I don't think Dr. Awesome would want to keep Collin waiting.") When he walked in the room, I scanned his face for clues, knowing he had just come from reading the EEG. He kind of pursed his lips. He looked at the ceiling. He rocked on his heels a little. No smiles. Definitely no excitement.

"Ah. Well. Collin's EEG showed no epileptic activity today. I saw some mild slowing in the background, but aside from that, I detected no discharges or any other signs of seizure activity."

?!?!?!?!

?!?!?!?!?!?!?!?!?!?!?!?!

"So. Ah. If I were reading this EEG and did not know Collin's history, I would say that it was an otherwise normal EEG with some nonspecific slowing in the background."

I think I might have opened my mouth.

"Of course, there is always the chance that if we were to run a 24-hour EEG we would see some sporadic discharges, but this is really of no significance."

I don't know why I feel the need to not appear stupid and happy when I hear news like this. That's ridiculous. Instead of smooching somebody, I choked it down and moved on to my list of questions.

SIDE NOTE: One of my questions involved whether he agrees with Collin's geneticist that we are likely not dealing with a degenerative disorder. He hemmed and hawed and drew a few charts and basically said that we can't know. Which, of course, I knew. But I was replaying the conversation with Kyle later and suddenly found myself getting riled up. I wasn't upset AT Dr. Awesome, but FOR him. Science was keeping him from using his experience and intuition to answer a simple question of opinion. In addition, Dr. Awesome had used the absence of reliable studies to discount the potential efficacy of a few therapies/treatments I asked about. Not that I am particularly married to any of these treatments, but it just suddenly rubbed me the wrong way that we have to wait for people to find the money to do 'reputable' studies in order for something to be considered useful or true. Without a study to cite, we can't recommend or even consider some options without being labeled 'alternative'. This lead me to conclude (without having even formed a hypothesis) that too much science can be detrimental to an otherwise reasonable brain and paralyze the ability to form sensible opinions or sometimes even make an educated guess. I probably don't even really believe half of this, but the conversation earned me my new favorite nickname from Kyle: Enemy of Science.

Dr. Awesome is very dear to us, and his caution in making premature judgments has allowed us to hold on to hope more than once. But I had to smile when he wrapped up our appointment by saying, "So. Ah. It appears that we are making some steps in the right direction with Collin's seizure control (TWO PLUS MONTHS SEIZURE FREE AND MED FREE) and development (SMILING, LAUGHING, COMMUNICATING, INTENTIONAL MOVEMENT, DEVELOPING PREFERENCES, USING HIS EYES). Now we will continue to watch and see what happens." What did I tell you? Science brain.

Tuesday, August 24, 2010

Hooray

And when I say 'hooray', I don't mean 'whoopee!' I mean "WOOOOOOHOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!'

We found out on Friday that, after literally months and months of struggle and discouragement and researching and nailbiting, we FINALLY got the official approval for Collin's Michelle P waiver. This means that instead of the traditional Medicaid waiver he had been receiving which is more of a medical waiver and only provided us with limited respite support, he now has a waiver designed specifically for individuals with developmental disabilities. So, we will now receive money from Medicaid intended to get Collin the help he needs.

Which means that we will be able to hire someone (or multiple someones) to come into our home and help me with Collin's therapies and care.

Which means that Collin will get even more one-on-one time than he does now.

And that I will be able to cook dinner sometimes and make Collin's numerous phone calls and think critically about therapies and equipment instead of just getting by. I'll be able to do what I do with more efficiency and creativity and energy because I'll actually have two minutes to rub together.

So, that was a pretty good kickoff to our Just Us Weekend. We celebrated with lots of rest, long walks, ice cream cones, and a trip to the art museum.

I think we're going to make it to vacation.

Friday, August 20, 2010

Catch Up

Someone somewhat politely brought to my attention recently that there has been a picture drought on this blog of late. Let me try to remedy the problem with this pictorial summary of a few things Collin has been up to.

Collin's school group is taking a break in August, but the last time he went, it was bug day. He had a good time feeling the bugs, reading bug books, and going to his very first music class, which almost made him completely lose it with happiness.

Collin has been working hard on head and trunk control this summer. His hard work in the pool and at home are paying off in the form of brief periods of *very* supported sitting.







A favorite new pastime is hanging out with little cuz Ila. They like to feel each other's face and have pooting contests. At this point, Ila has a winning record.


One of the biggest things we've been working on is eating. Collin still gets vital stim therapy twice a week and we will soon be working with an additional speech therapist to hopefully kick his progress into high gear. He accepts food fine, but doesn't do much with it once it gets in his mouth. Here, Collin is enjoying blueberries for the first time. Who knew you could have delicious fruit on the ketogenic diet?!

And here's the grand finale. Listen closely for the snorting.

Laugh it Up from Annie Kratzsch on Vimeo.

Thursday, August 12, 2010

Burnout

We've got it bad around here.

I've been noticing this weariness for the past few weeks and I just couldn't shake it with the random nap or trip to Target by myself. Every therapy, every appointment, every obligation, no matter how productive or enjoyable, just felt like too much. Even on days when not much was going on, we were feeling the stress of the every-day and anything extra or unexpected (like Collin's poop-of-all-poops last night that required dismantling his high chair and throwing away a perfectly good set of mardis gras beads) sent us careening into stress-out land. Even Collin, though he is still cooperative with his therapies and making slow but steady progress, seems a little lackluster, almost like he's bored.

And when I thought about it more, I realized that none of us have really had any kind of a true break in recent memory. Like, since Collin was born. We took one week off from therapies last year, but that's it.

We have a much-awaited vacation coming up the week of Labor Day, but that's weeks away. So, we had a family meeting Monday night at dinner and came up with a plan of survival so we can make it to our week of rejuvenation. The basic tenets are as follows:

1. Minimal cooking, which leads to
2. Minimal cleaning
3. Minimal therapies - this is a hard one, because it's so much a part of what Collin does every day, but we narrowed it down to his NACD program and regular time in the pool
4. Minimal commitments - we backed off on a couple of things, even though we really like them, and declared one "Just Us Weekend" between now and vacation.
5. More exercise (or at least the same amount) - for us, one surefire way to avoid a mounting stress storm is to do some yoga or take a run, so we're making room to do that as much as we can/want.

SIDE NOTE: Speaking of running - Collin is doing a great job on his goal for the Stampede for VIPS 5K in a few weeks. I felt bad that I hadn't raised any money yet, but he told me not to worry about it and that he would take care of the fundraising so I could focus on running without injuring anything else. And I said 'ha ha'. And he said 'lighten up'.

ANYWAY. I feel like we've seen positive results already. Collin is taking great naps during the day, which is a nice change, and has really enjoyed getting back in the water more often. I'm feeling less frazzled and we're all benefiting from more downtime together. There's no better medicine.

Friday, August 6, 2010

Try, Try Again

Well, I've had ultrasound treatments, chiropractic adjustments and physical therapy and I'm finally running again after The Sprain That Ate My Foot. And so, Kyle, my sister and I will be participating in another 5K in a few weeks! (Do you like how I said 'another' like I actually ran in the first one?)

The annual Stampede for VIPS is a huge event to benefit Collin's school - remember? the one where he did his first craft? where he went to his first ever picnic right after being diagnosed with Infantile Spasms last year? where he peed his pants from excitement in his first music class? It is private and non-profit, which means they need to come up with their own money and this event is one of the heavy-hitters in that department. The 5K is just one of the many fun things that will be going on at Churchill Downs Saturday, August 28th, so come on down if you don't have anything planned.

It's true that visual impairment is only one small aspect of Collin's challenges, but VIPS provides a place where he is totally accepted and encouraged to try things he might never do otherwise, so we are happy and proud to support them in this way. And YOU can even go to Collin's personal Stampede page and join us in supporting one of our very favorite places!

Monday, August 2, 2010

The Croup

I failed to mention that our primary phlebotomist last Monday was sniffing and hacking and coughing and I heard her tell someone on the phone that she was sick but had come into work anyway since everyone else had called in. When we went back to the room, I told her that I had heard her say she was sick and asked that she put a mask on since Collin has low tone and seizures. She assured me that it was just allergies. (Side note: People make me crazy with swearing that every symptom they have is from allergies, no matter what time of year it is. It's some kind of virus denial. Fess up! You're sick!) I said that I was glad to hear that but that if there was ANY chance that it was more than allergies, I wanted a mask on her or Collin or both. She waved off my concern (literally) and started prepping Collin's arm, breathing all over both of us. Maybe I should have pushed it further. In the moment though, I guess I wanted to believe her since she had already coughed on us anyway.

Fast forward to Wednesday, when Collin started getting grouchy and needing to be suctioned in the mornings. Thursday, he started drooling like one of those fountains that punk kids put dish soap in, so I assumed we were dealing with teething. I wasn't feeling great either, but sometimes that just happens when you get exhausted enough. Then 3:00 Friday morning, Kyle and I found ourselves leaping out of bed and running to Collin's room while he coughed and choked on all of the snot and phlegm that had somehow appeared overnight. His fever was very low, but we could tell he didn't feel well, so I took him to the pediatrician the next morning.

The pediatrician concluded that it was a virus of some kind, prescribed Tylenol for irritability, increased fluids to help him heal faster and said to call if anything got worse. By early afternoon, Collin's breathing was sounding hoarse and his cough sounded like a bark and made him retch. I called back and got our diagnosis: croup.

Now, in my mind croup was a throwback to the old days when illnesses were serious enough to have a THE in front of them. It wasn't 'plague', it was 'THE plague'. You didn't get 'croup', you got 'THE croup'. And, according to Anne of Green Gables, the croup requires sending to the next town for the doctor, drinking a bottle of ipecac, and yacking your guts out. Apparently, though, you don't even 'catch' THE croup. It's just a condition that develops in some cases when you have come down with a virus. Your airway gets inflamed, which causes the forced, hoarse breathing and barking cough. The pediatrician put Collin on a short regimen of steroids to help with the inflammation and he was sounding better by that evening. After a weekend of good rest, lots of water, and medicine, our boy is almost as good as new.

Two good things came out of this episode:
1. Collin did not have any seizures throughout the whole ordeal. He was still cutting his premolars, had a fever and a cough and still didn't seize. That's got to be a good sign for the long term.

2. He cried and cried when he felt his worst on Friday. Every time, he woke up from one of his many naps, he cried. When the pediatrician cleaned out his ears to see if he had an ear infection, he screamed his head off until there were snot and tears running down his face. It took a long time to calm him down. It was great.

To follow up on the phlegmy phlebotomist: I called Friday after I realized Collin really was sick and spoke to the lab supervisor, who was extremely helpful and friendly and gave me her direct line, asking me to call and give her an account of my next visit to their lab. You KNOW I'll be using that phone number.

Wednesday, July 28, 2010

Conversation With a Nurse at the Pediatrician's Office

Nurse: Let's see how Collin's doing. This is his 18 month checkup, right?

I confirm as she pulls out his folder and looks at his developmental chart. Pauses.

Nurse: OK... (She puts her finger on where he was at our last appointment and seems to be processing.) Maybe I should start at 12 months this time.

Me: I wouldn't.

Nurse: Really? He's not talking yet?

Me: No.

Nurse: Okay. Hm. Not even 'mama' or 'dada'?

Me: Nope.

Nurse: Drinking from a cup?

Silence. She still has not looked at either me or Collin at this point.

Nurse: Well, how about 9 months?

Me: (Taking a breath first.) His First Steps evaluations have him more around the 3-6 months range.

Nurse: Hm. Well. Okay. Let's just forget about this.

She closes the folder and leaves.

This probably would have had me close to tears a few months ago, but this time, I mostly felt sorry for her. She just didn't know what to say and seemed to know on some level that it was going poorly but couldn't salvage it and I couldn't help her. At the end of our appointment with the pediatrician, I suggested that the nurses look at a child's chart before they start asking developmental questions and when they see a major delay, start off by saying, "So tell me what new things Collin is doing since your last visit." That allows me to brag on the fact that he laughs consistently and can hold his head up more reliably now rather than having to endure the whole rigamarole of finding the 'right' spot on that blasted chart for Collin. It also allows her to get the information she needs without floundering and being insensitive, however unintentionally.

Other than that, though, the visit was very smooth and positive. Our pediatrician is FANtastic, in case I haven't mentioned that before. He loves Collin and at one point, when he held Collin up in the air and put their foreheads together, I literally had to swallow down a little sob. He is very pleased with Collin's progress (which seems to be the theme these days) and said that he looks very happy and healthy. I'm going to email him some information on Collin's branched chain amino acid therapy so he can learn more about it (because that's the kind of doctor he is) and he is very supportive of the geneticist's suggestion to try growth hormone therapy. He ended the appointment by writing down my suggestion about the nurses and telling me that we're doing a wonderful job with Collin. It caught me off guard and I choked down some more tears as we left.

We got out earlier than I had expected and Collin fell asleep in the car, so I got an iced chai latte at a drive-thru and we just drove around for a while and listened to classical music. All in all, not bad for a Wednesday morning doctor's appointment.

Monday, July 26, 2010

The Twilight Zone: A Good Genetics Appointment

We've never had good luck with geneticists. In general, our appointments with genetics have been vague, unhelpful, and discouraging. So I was less than excited to take Collin down town for an early morning 18 month genetics checkup last week.

The strange thing was that it was great.

The doctor spent an hour and a half with us, asking insightful questions and playing with Collin in a voice that sounded ridiculously like Billy Crystal in The Princess Bride. He did a thorough examination, reviewed Collin's fairly extensive medical history since the last time we saw him and I felt like he had a pretty good idea of what was going on with Collin by the end of the appointment, which is more than I can say for some other doctors.

By far, the highlight of the appointment was a sentence that totally took me by surprise: "I'm pretty confident that whatever Collin is dealing with is not degenerative." It felt like it came out of nowhere. For various reasons, I rarely ask questions about things like that, so I didn't expect it to come up. So, I just blinked at him at first and then all I could think of to say was, "Really?" He explained that it is highly improbable that the trajectory of Collin's recent development would be possible if he were facing something degenerative. Instead, he believes that it is a static condition, which would mean that, rather than things getting steadily worse, they will get slowly better. He emphasized the slowly, but all I heard was the better. He encouraged us to go ahead and get our follow-up brain MRI in August, but feels pretty sure that we won't see a change for the worse. Part of me started jumping around and screaming like a lunatic, but another sad and hurt part crossed her arms and said, "We'll see." But even she had to admit that it was an exciting thing to hear from a cautious and thorough doctor.

As always, we left with a "plan" list as long as my arm (which, given my genes on my mom's side, is saying something):

1. He referred us to endocrinology to see whether Collin is a candidate for growth hormone therapy. Collin is below the 3rd percentile in all of his measurements, so he doesn't think it will be a problem, but we'll see. The doctor thinks it could really give Collin's muscles a much needed boost, allowing him to do some of the things he obviously wants to do right now, but physically can't.

2. He also referred us to sleep science to get a sleep study. Collin is a somewhat fitful sleeper and there have been suspicions of apnea for a long time, so we'll see what we're really dealing with.

3. He ordered a ton of blood work, including a genetic test, another mitochondrial test, and several levels linked to the ketogenic diet and metabolism issues. We did this this morning and it took the usual initial try, call to the IV team, massive finger stick/squeeze and room full of stressed-out phlebotomists to get everything we needed.

4. He ordered an x-ray of the hips to see whether or not Collin has any congenital predisposition toward hip problems so we know whether or not to worry about getting him in a stander at this point. We also did this while we were at the hospital for the blood work; it took about 90 seconds and Collin slept straight through it because he was so exhausted and overwrought from the blood draw fiasco.

5. We will be adding a B vitamin complex to Collin's supplement regimen.

We'll be seeing the geneticist again in another 6 months and this time, providing Collin continues to develop at his own pace, I don't think I'll dread it quite as much.

Tuesday, July 20, 2010

The Spice of Life

So...

About 30 minutes after I posted yesterday, Collin went a weird color and started acting strange and shaking and pooping a lot and retching until he turned blue. Just to preserve some variety in our lives.

I checked his blood glucose and ketones and both were quite high, which was strange, because usually if one is high the other is low and you know how to fix it. So, I called our awesome keto nutritionist at the hospital, who immediately called the neurology nurse practitioner. They confirmed my decision to give him a bit of juice to bring down his ketones, but also recommended that we see our pediatrician as soon as possible, thinking that Collin was coming down with a bug. I didn't think this was the case due to the sudden onset, but definitely wanted to get the doctor's opinion and they worked us in within the hour.

In the meanwhile, I gave Collin half an ounce of apple juice and he immediately fell dead asleep. When we got to the doctor's office, he woke up and was smiling again within a few minutes. I rechecked his blood levels and his glucose had stayed the same but his ketones had dropped. The doctor didn't find anything suspicious and suggested it might be viral.

My theory is that something made his ketones skyrocket and he reacted to that change. His ketones increase throughout the day and by 1:45, they were already what they usually are by the time he goes to bed and high ketones or fast ketone changes can cause nausea and all sorts of yucky side effects. As to what made them increase in the first place, I don't know. I have noticed that his ketones have been generally higher since we started making his food in the Vitamix blender. I'm not sure what the connection would be - either making the fats more easily absorbable or more evenly distributed is all I can think of. Regardless, I mixed his next batch of meals at a slightly lower ratio.

All of Collin's blood levels were normal by the time he went to sleep last night and he's very much himself this morning, but I will definitely be keeping an eye on things for a while.

Monday, July 19, 2010

Keeping Up

I'm having a hard time handling Collin's awesomeness myself, so I'll try not to overwhelm you today.

Thursday during aquatherapy, Collin's wonderful therapist was bragging on how well Collin was doing and decided to push him by trying something she didn't expect him to be able to do yet. She faced Collin away from her, leaned him to one side, and said, "Sit up, please, Collin." And darned if that little booger didn't start wiggling and kicking until he got himself into and upright position, holding up his own head. I thought it was a fluke, so she did it again the other way. And then leaned him farther over. And then he did it four times with me. I was crying right there in the pool. It was amazing. Apparently, we're going to have to be careful what we say around Collin if he's understanding that much more than we thought.

Saturday, we drove to Cincinnati for Collin's quarterly NACD evaluation. Bob was really pleased with the progress he's seeing. Collin laughed and squealed and put on a big show to demonstrate how much he's interacting with us these days. We haven't received our new therapy program yet, but we know it's going to include LOTS more tummy time, stickers in his palms to make him more aware of his hands, and maybe some exercises to increase lung capacity.

This weekend, Collin also debuted on the piano. He often sits in my lap while I play and LOVES it, but he has always lacked the interest and/or ability to push the keys down himself. He wouldn't extend his arms enough to even reach the keys without bending all the way over, and when he did, he would ball up his hands. Apparently, something clicked this week, though, because when I sat him up on my lap, he stuck his arms out like he wanted to try, so we did and he pushed the keys down by himself numerous times. I had a flashback to a picture of myself pretending to play the piano at my Grandma's house when I was little and got teary. This picture goes out to Aunt Aimee.

Today, we saw Collin's nutritionist and found out that Collin has gained ANOTHER 11 ounces, which blows my mind since we haven't increased his calories since March. BUT, his fat stores haven't increased again either, which makes us think that the weight he's gaining is in muscle, which is FANTASTIC. He also grew another quarter of an inch, and -- here's the kicker -- his head grew .7 centimeters! IN THREE WEEKS! You should see his growth curve. It's almost vertical. That means he's back on the chart for head growth! (Barely, and he's hanging on right below the 3rd percentile, but we'll take it!) I guess his craniosacral work, healthy diet, and lots of specific input to stimulate development is finally adding up.

We also had a visit from Collin's OT this morning and she suggested working on Collin's hand awareness and feeding all at once by trying to eat by mouth. I kind of chuckled to myself, knowing it wouldn't work and that he wouldn't cooperate, but I put a big gob of carrots and butter in his hand when she left and his eyes got all big and after a couple of tries, he let me put it in his mouth and licked his fingers! This is huge for a kid who hasn't wanted to use his hands OR mouth for a long, long time.

Phew. I'm exhausted just writing all of this. If he didn't have to take naps, I would never get a chance to catch my breath so I could keep up with him.

Wednesday, July 14, 2010

Reasons to Smile

Today, Collin went to school for the first time. VIPS (Visually Impaired Preschool Services) is an amazing resource with a great facility and they have a 'class' for kids 0-3 on Wednesdays called "Play and Learn", or PAL. We've been meaning to go for about a year, but part of that time Collin was immunosuppressed and part of the time he was having seizures and part of the time I was crazy busy and part of the time I was avoiding trying something new. But we got ourselves together and went today, and boy was it awesome.

Collin got to be with some other kids and I got to talk to some other moms facing similar struggles. And we played. It was great. Collin seemed to genuinely enjoy himself (though he pooped out and got overstimulated part way through). He sat in a kid-sized bean bag and played with new toys and sat at a kid-sized table and made a craft. He had quite a bit of help, but he MADE A CRAFT, PEOPLE. With Ms. Margaret's assistance, he made a watermelon out of a paper plate. I literally had to bite my lip when she handed it to me to take home. I guess that was one of those things I wasn't sure I would ever get to experience. And when I got home, I put it on the refrigerator and called Kyle and cried like a big baby.

We ended our school morning in the sensory room, which is wonderful for kids with all kinds of special needs. As the big brother of one of the kids said, "It's like magic in here." Collin loved the bubble tower and did great in the lighted ball pit. I was so proud of him and felt so welcomed by the people there. I've been smiling about it all day.

Friday, July 9, 2010

Busy Busy

Hi folks. Sorry for the delay. Things have been busy busy busy around here. After our last post, Collin's seizures changed to something that looked more like Infantile Spasms again and we narrowly missed another stay in the hospital. Then as soon as we got the seizures under control and things calmed down, the best thing ever happened...

Collin got a cousin! Meet Ila (that's EYE-LAH, not LLLLLAHHHH, as these pesky sans serif letters make it look. I expect myself to type llama half the time.) She's cute and loud and eats like a champ. And speaking of champ - her mom kicked major booty for 19 hours bringing her into the world.

So, we've been busy getting to know Ila and just taking care of the same ol' everyday things. But Collin is the supreme multi-tasker and has done all of this PLUS the following list of awesomeness:

- held his head up for 15 seconds in aqua therapy
- kicked on command in the pool
- dominated aqua therapy and became a major water baby
- turned toward his mama's voice for the first time
- learned to intentionally turn on his favorite mirror toy
- made progress in sucking pureed food off a spoon
- generally made strides in being more interactive with listening and looking

And, as we all know, Collin is constantly buying cool stuff. This month, he got an amazing chair swing that is hanging in the den and a Vitamix blender so he can move away from baby food on his blenderized diet. The only problem is that Mama fell slightly in love with the Vitamix and has been using it all the livelong day. Luckily, Collin doesn't mind sharing.

Sunday, June 20, 2010

Redeeming Father's Day

Last Father's Day, we woke up happy and relaxed. I was well on the road to recovery from postpartum depression, Collin had started sleeping most of the night in his own bed, and we were going to celebrate Kyle's first Father's Day with blueberry pancakes for breakfast and a lunch with his dad and brother. We went and got Collin and brought him to lay with us for a while, and then he started doing that same strange jerking we had noticed the day before. It had been going on for some time, but seemed to be getting more frequent and forceful. Kyle was the one who said what we were both thinking: "I don't think that's right." For some reason I will never know, I opened my laptop, typed in "baby seizures", and our lives instantly changed.

The first video I saw was of a baby doing exactly what Collin had been doing for weeks, and in the comments, the person wrote something to the effect of: if your baby is doing this, calmly pack a bag and go straight to the closest children's hospital. We read the term "Infantile Spasms" for the first time and phrases like "catastrophic seizure disorder" and "poor prognosis" and "mental retardation". There was shock, lots of crying, and hard conversations. I couldn't stop telling Kyle how sorry I was that this had happened on his first Father's Day. He was sorry that it happened right as I was starting to heal. And then, somehow, we went on with our day. I have no idea how. I made pancakes. I served lunch. My whole self felt like skin after a burn - there's the initial jolt of pain, then the lull of numbness, and then the waves of actual burning start. They wash over and make it hard to think. I was sick to my stomach all day. Everything felt hazy from the burning.

The next day, we got in for an early EEG and didn't even make it all the way through before they had paged the neurologist on call (Dr. Awesome, thank goodness) and escorted us to express check-in. But we didn't know any of that yet on Sunday. On Sunday, we were just stuck with our fears and our grief.

So this Father's Day was very significant for us. The initial plans were to celebrate with some special activities, but then Collin's seizures came back this week, which makes that kind of planning tough. Instead, we made plans that turned out to be even better: we had the calmest, most 'normal' day possible. A special omelet breakfast, lots of down time together as a family, cheap lunch at our favorite burrito place, a diaper run to Target together, naps, and an evening at the pool.

And I just feel so, so thankful. I look back at our raw, terrified selves this time last year and can finally see the extent of growth that has happened since then: the priorities that have shifted, the insecurities that have shriveled up. Last Father's Day, we were being burned alive by our fear of what was to come, by our grief over losing precious hopes and expectations. This Father's Day, even though we still struggle, we are full of appreciation for our Collin, of joy over all of the things he's accomplished that we didn't know if we would ever do and excitement for new things he will show us.

And let's just be clear about how all of this came about. It's not because we're good people or because we worked so hard or are special in any way. This could just as easily have destroyed us. It was a gift. It was grace. It was God at work in people who were too broken to make it through the daily necessities, much less crawl up out of that mire onto solid ground again. And yet here we are, not on the other side but in the thick of it still, but living in hope and deep love for our precious son. We were able to reclaim this Father's Day because God brought good and beautiful things from horrible and crushing things. The more I experience, the more I become convinced that that's the only way this kind of change can happen.

Thursday, June 17, 2010

What Now

At some point yesterday, we decided to give Collin a regular dose of clonazepam every 4 hours for 24 hours to try to break his seizing cycle. Interestingly and unfortunately, it didn't have the effect we had hoped. Rather than knocking him out and stopping his seizures all together, Collin has continued to seize sporadically and is still having trouble falling asleep despite being very groggy and lethargic.

He started off this morning with 6 huge dirty diapers, which makes us think that this seizure trigger might have been digestive in nature, but even if that's the case it doesn't mean that the seizures will stop now. It seems like Collin's pattern is that once the seizures get going, they have a hard time stopping even when the trigger is long gone.

So the question now is what to do in the meanwhile. Do we continue dosing him with clonazepam and hope that the desired effect will kick in at some point? Do we abandon clonazepam and let his body work things out on its own (since we've seen in the past that it can...eventually)? Do we stop clonazepam, watch the seizures and only use the med for clusters? Do we talk to the neuro about other options? That one always makes me very nervous because it always feels like they are very anxious to 'start' a new med, which we're not interested in at this point. We're still thinking along the lines of 'rescue meds' - used only during spells of seizures rather than daily.

We are going to hang tight at our current ratio on the ketogenic diet, although I am going to experiment with a different fat source. We had been using ghee (clarified butter), but it is solid at room temperature (like coconut oil, which we tried in the past), so it separates out and never fully reincorporates, which isn't good for a blenderized diet that has to be very precise in its ratio of ingredients. For now, we found a good cream that isn't ultra pasteurized or homogenized and we'll use that as we investigate other options. Hopefully, his ketones will come back up in the meanwhile.

One of the things I hate so much about seizures disorders - and I actually remember thinking this the very first day I realized that Collin probably had Infantile Spasms - is that there are no good options. There are no even remotely easy decisions. For example, Collin has already stopped crying with these seizures. Is that the effect of all of the medicine or of the seizures themselves? Do we take him off of the clonazepam to see, risking more seizures, which may be the actual cause in the first place? We are constantly talking ourselves in circles trying to find the best of countless unsatisfactory options.

Tuesday, June 15, 2010

Regrouping

So, I have to say that I was a little blindsided by this one. Collin has been a little grouchy and grinding his teeth, but he's done that off and on for weeks. His ketones have been slightly down, but nothing drastic, and I've been tinkering with his fat sources to find something better suited to his body. He was starting to get into a good sleep cycle, he had been incredibly interactive and active and aware. I just didn't see it coming.

I took monitor duty again because I was so sure that we were going to have another good night, but I woke up at 3 am to a sound that I knew wasn't right. I looked at the video monitor and saw that he was moving, but couldn't tell what was going on for sure, so I went into his room. He seemed upset, but nothing else stood out, so I repositioned him and went back to bed. I heard more sound 15 minutes later and then at 3:30, I just happened to open my eyes at the exact moment that he was launching into a tonic seizure. I got to his room by the time he was done and had started crying.

By around 5, we had decided that the seizures were starting to cluster, so we have him 1 clonazepam and they stopped shortly after. This is huge, because it means that what we were hoping with the clonazepam wean has happened: he has become more sensitive to it again so we can use it as a 'rescue med' without having to fight his resistance to it. It also means, though, that the sedative effect of the drug has kicked back in. Collin slept until 10:30, tried to fall back asleep at 1, but had another seizure, and then fell asleep at 1:30 after another clonazepam and has been asleep ever since. I'm so glad his seizures seem to respond, but it's really hard when this time yesterday, he was smiling and laughing and starting to look at himself in a mirror and wiggling all over.

It had been exactly one month since his last seizure. He had ONE half pill left before his last wean was officially over.

We're not sure what we're going to do at this point. I have contacted our nutritionist at the hospital to see if she has any insights. I'm adding Miralax to his diet for a couple of days to make sure it's not a digestive issue. We're increasing his Tylenol again to make sure it's not a pain factor. Other than that, I guess we're just watching and thinking at this point. We're going to spend some quiet family time tonight recharging to make the rest of this week, whatever it brings.

Let me just say, though, that I am SO THANKFUL for this past month. It has been a true joy getting to see Collin's personality more and more and watching him starting to really respond to his NACD program, therapies, his environment, and people. Just yesterday during vital stim, we realized that he was telling us that he wanted more! What a thrill to communicate with my child. It was such a treat to deal with things like sleep schedules and crying and Collin talking too loudly in public places. I'm trusting that this will pass and that the next seizure free time, however long it ends up being, will be that much sweeter.

And...We Have Seizures

Son of a gun.

Monday, June 14, 2010

Fun, Fun, and More Fun

We had a weekend jam packed with fun and Collin hung in there like the champ he is. Saturday morning, Collin played with Daddy while I went yardsaling with Aunt Tess. That afternoon, we got to have lunch with our good friends, the Hollands, who were in town for the day. We ate Ethiopian, had some laughs (including Collin!), and then explored Creation Gardens downtown. Collin particularly loved the perishable food section of Creation Gardens. Maybe because of the cold air and bright colors. Who knows.

Saturday afternoon brought tacos and fun visiting over at Mimi and DeeDee's houses and then an early bedtime after such a busy day.

Sunday, we went to celebrate the first birthday of our friend Emily. Emily has Infantile Spasms like Collin and it has been a huge help to be able to walk through this thing with another family so close to our situation in so many ways. There was pink and purple galore, lots of kind people, and a beautiful cake. Emily slept through the whole thing and Collin talked (yelled) through it.

Sunday night, we capped off the weekend with our first trip to Lakeside, our neighborhood pool. Collin needed a little coaxing to get in the water at first since it was a little colder than he's used to at aqua therapy. Aqua therapy was a huge hit this week and we tried out some of the new moves we learned, plus some motor boat action that Collin couldn't get enough of.

And to top it all off, Collin slept basically through the night for the first time in recent memory, which means all three Kratzschs got a good night's sleep. A perfect ending to a smooth and fun weekend. We are so, so grateful.

Wednesday, June 9, 2010

No Rest for the Weary

I thought things were getting better. It seemed like there were a few nights when Collin was getting up less, but maybe I was just so exhausted that I was sleeping through more.

Last night, Collin got me up 1 - 2 times an hour from 10pm till 7am. And those were just the times I actually got out of bed. My handy dandy new video monitor saved me quite a few unnecessary trips. But I'm still feeling a little on the crazy side this morning.

We're giving the clonazepam every 36 hours through the end of this week, then every 48 hours, and then we'll be done. I'm hoping that the slow pace of the wean will allow his body to set up its own schedule with minimal discomfort, but I have to say that I'm tempted to just stop so he can go ahead and adjust and get it over with. I'm considering melatonin to help with the process. Lots of kids with seizure disorders use it at some time or another. But the thought of adding something new makes my shoulders tense up to my ears, since you never know what will trigger seizures with Collin.

We have our first aqua therapy session today, which I was super excited about until last night happened. I wonder if they have an option in which mama takes a nap on the side of the pool.

UNRELATED SIDE NOTE: Sunday evening, we picked up burritos and took them to the park to enjoy the unusually beautiful weather. Kyle sat with Collin in the car while I picked up the food, and as I was on my way out the door, I heard someone say 'Boo.' I looked around in confusion for a minute until I realized that it was our beloved neurologist, Dr. Awesome. I hadn't recognized him in his t-shirt and ball cap. So, that is the kind of guy he is. He could have let me walk by and I never would have known, but he recognized me, went out of his way to stop me, introduced me by name to his lovely daughter, and proceeded to ask detailed questions about Collin. Who knows how many hundreds of patients this man has right now. And that is reason number 56 why his name is not an exaggeration.

Saturday, June 5, 2010

More Late Night Adventures

Around 11:30 last night, I was awoken by a sound I couldn't quite place. It was definitely coming over the monitor. I lay perfectly still and tried to figure out what I was hearing (and this is why we finally broke down and ordered a video monitor this week). It sounded like a little grunt. And it was coming rhythmically. And any rhythmic sound chills my blood in that special seizure way. I jumped out of bed and raced into Collin's room as quietly as I could and tried to assess the situation. He was facing away from me, still grunting, and tensing his arms when he did. My heart sank and I reached to get him and hold him during whatever these new seizure were.

Except I saw right away that they weren't seizures. His face was puckered up and his lip stuck out and his eyes screwed shut. He was crying.

When Collin lost his cry back during our horrid course of Topamax, I didn't even realize it had happened at first. And once I did, I would have been sad about it if I hadn't been so overwhelmed by all of the other devastating aspects of the situation. Starting earlier this year, we saw occasional cries during the toughest situations - mostly in the hospital - but it was never long or consistent. And then recently, he's been crying at certain kinds of pain (usually when something is being peeled off his skin) or when waking up from a heavy nap. Even then, it's pretty quiet. You really have to be able to see him to know what's going on (as with everything else).

So my initial reaction last night was just confusion. Something must have been really wrong for it to wake me up and last this long. My mind raced, but I couldn't come up with anything. Kyle and I ran through several emergency scenarios, but none of them fit. And eventually, it came down to this: he was uncomfortable. Maybe cold, maybe teething, maybe lonely. Maybe sad because he had chewed his favorite pacifier in half in the night (that's a whole different story). Who knows? But nothing major. And that made it that much better.

I realized at one point that it was the first time since he was born that I've been able to comfort my crying baby in the night, since I was out of commission from the PPD between our return from the hospital and his Infantile Spasm diagnosis. Don't let the complainers fool you: it's a sweet, sweet thing.

After spending some time in bed with us, getting an in-tact pacifier, some orajel, and water, he calmed down and didn't object to being back in his crib. Of course, when he woke me up at 3:30 (and 5:00, and 5:30), he was laughing.

Tuesday, June 1, 2010

Golden Slumbers

Collin is not sleeping these days. Well, not at night, anyway. At first I thought it was the full moon or something (which it was), but then the trend continued. There were a couple of nights when I got up almost every 15 minutes all night. Seems like I would just get up and do something productive, huh?

So, we're thinking it might be related to the weaning of his last seizure medicine, clonazepam. It's a sedating medicine and he has been on varying doses of it for almost a year, so a wean is bound to affect his sleep cycles. He's down to half of a pill once a day, and based on my experience I think that the end of a wean is the hardest. So, after this week, we will space the half pills out to every other day, every third day, etc. to give him as much of a chance as possible to adjust with minimal side effects.

At least he's not upset while he's awake. On the contrary, he gets talking or squealing and can't get calmed down. Here's some video from this weekend, when we discovered that he thought the sound of whipped cream spraying was hilarious. First, we emptied almost the whole can on our plates and then Grandad figured out how to make the sound on his own.

This, of course, is right before bedtime.

Funny Stuff from Annie Kratzsch on Vimeo.

Tuesday, May 25, 2010

Rusty

That long break from the internet made me a little rusty. Collin's doing well this week. We have a light therapy week, so we're enjoying taking walks in the mornings and swimming in the Water Way Babies pool. Collin's ketones have skyrocketed after going back to olive oil. Man, I love being right. He seems averse to having anything in his mouth right now, which makes practicing oral feeds a little tough. It may be his last two teeth coming in, because he's also been grinding like crazy this week.

Here are a few pictures I've neglected to share over the past couple of weeks:

Here's Collin trying on DeeDee's sunglasses. I think he really pulls it off.






We met some friends in the park for a bocce tournament and Collin had a great time cheering everyone on.




And here's Collin being a picture hog at Aunt Tess and Uncle Kevin's baby shower.