Thursday, April 29, 2010

I AM NOT EVEN KIDDING

That is a sippy cup, people.

Untitled from Annie Kratzsch on Vimeo.

Food, Glorious Food

Yesterday officially marked the beginning of Collin's transition to real food. He had a delicious (I'm assuming it was delicious, neither one of us tasted it) combination of cream, chicken, and green beans. I calculated the correct ratio of fat to protein/carbs using the Ketocalculator program and then carefully measured everything out by weight and blended it. It went through the tube beautifully and he tolerated it with no problems. We'll probably stick with one meal a day for 3-4 days before adding more meals and/or new foods.

We've been hearing and seeing lots of great swallows since starting Vital Stim last week, so we're starting to become hopeful that we're going to see long-term changes from this therapy. He kind of overloaded and shut down during his session on Monday, but we've been doing more oral stimulation since then, so I'm hoping his session this afternoon will be more productive.

Hope and Possibility 5K Status: I've made enough improvement that I will at least be walking Saturday morning. I'm holding on to a faint hope that I might be able to run part of it, but I'm mostly going to be glad to just be there.

Tuesday, April 27, 2010

NACD Eval

Well, after sitting still on interstate for over an hour Friday afternoon, we finally made it to our NACD evaluation - a bit late. Mr. Doman was very understanding, though, and the evaluation was nothing short of a success.

He asked a lot of questions about Collin's program and progress, tested some of his responses and his vision, and just generally observed him while we talked. At one point, he said, "Well, I think you might have brought a different kid this time." I almost scooted out of my chair with excitement. He agreed that we have accomplished our two main overarching goals these past 3 months - to get a handle on the balance we want to strike between seizures and medicines and to focus on getting Collin globally more aware and responsive. He was very pleased with the way Collin's processing has improved and we had a thought-provoking conversation about adaptive equipment that I am still thinking through.

We don't have Collin's new program yet, but should be getting it soon. We got a few pointers on some of the activities we will be continuing and have just been plugging along with our old program in the meanwhile.

On a not-as-awesome side note, I wiped out during my second to last training run last night. I was feeling good and making great time, but when I swerved to miss some rotten wood in the road, I wiped out. I mean, totally wiped out. As in, phone 20 feet down the street, iPod disconnected from the headphones and across the road, skinned knee, gravel in the elbow, twisted ankle, fell-straight-forward-but-ended-up-on-my-back kind of wipe out. I did make it home on my own, miraculously, but then things stiffened up and I'm not sure what I'll be doing on race day this weekend. I'm trying not to be too devastated.

Thursday, April 22, 2010

Neuro Visit

We had maybe the most uneventful neuro visit to date this morning. Dr. Awesome was pleased with Collin's development in terms of using his eyes, laughing, and being more alert. He confirmed that every genetic and metabolic test has finally come in (and we're talking an extremely comprehensive list, here) and that all are normal. His gut seems to be that something is structurally wrong with Collin's brain on a microscopic level, though whether it is purely due to the way it developed structurally or to some enzymatic deficiency, there is no way of knowing. He emphasized again that there is no way to accurately predict how Collin will develop in terms of tone, strength, language, processing, etc. I am far from a blind optimist in these situations, but I do take this as a good thing. Without anyone telling us what Collin likely will or won't do in the future, there is nothing to discourage us from pursuing every avenue within our power to increase his quality of life.

We discussed next steps, but couldn't come up with any tests we all felt were necessary at this point. Dr. Awesome feels like neuro imaging has not been of much help to us so far, because there is no direct correlation between structure and performance when it comes to the brain, but we will be repeating Collin's MRI and MRS this summer (at the same hospital and on the same machine to eliminate any disparities in quality that might make it difficult to compare results), but won't be doing any EEGs anytime soon. We will be preparing a report to send to a neurogeneticist at Johns Hopkins to ask for further direction and insights, but our basic plan of action right now is to monitor Collin clinically. We're going to let him show us the direction he's heading in by watching his behavior and development while keeping a tight rein on his seizures.

My personal immediate goals for Collin are to work on nutrition (we are in the process of moving him off of Ketocal formula and on to real foods, which will give me much more control over what goes in to his little body and hopefully will have many positive effects), improve seizure control (by adding branched chain amino acids to the ketogenic diet and hopefully weaning off of his final anti-epileptic drug), and really hammering intensive therapy through his NACD program. I have high hopes that these three things will help him become even happier, healthier, and more independent and interactive than he has already become recently.

Wednesday, April 21, 2010

Brace Yourself for the Exclamation Points

Collin had a short vital stim session last night just to get him used to the leads. He had a couple of small swallows, but nothing else happened until we tried to take the leads off. And then he started crying!!! Hard!!!! He got all red-faced and I had to pick him up and comfort him!!!! It was awesome!!!!!

Then today, he had another, longer session since he tolerated his first one so well. And he had a TON of BIG SWALLOWS!!! AND HE SUCKED FROM A STRAW!!!!! TWICE!!!!! The first one scared him and he almost choked, but he recovered and swallowed it eventually. If that's just the first real session, imagine what 6 months of twice weekly session might do!!!!!!

Other Sorrows

I was talking to some friends last night about my reaction to this book that I just finished and realized later that I probably misrepresented myself. I talked about how I felt calloused to the stories of suffering that comprised most of the book, but I think what I meant was that the people in those examples had already reached the 'happy' part of their stories, in which they have learned their valuable lessons and achieved their admirable goals, whereas I am still stuck in the mess of struggling through hardship.

The reality is that I have felt a strong, almost bizarre connection with the suffering of others since experiencing our struggles with Collin. When I was preparing for childbirth, I read accounts of women who, during the throes of labor, felt a supernatural connection to all of the other women throughout time who had given birth. I always smirked at these and pictured hippies and new age-y women. But then, in the days and weeks after Collin was born, I found myself thinking about women in past times or in other parts of the world who bore babies that had something wrong and they couldn't tell what and there was nothing they could do. I thought about how common it used to be for women to lose one or more of their children after birth, and though it was a fact I had known for a long time, it just made me ache. Every time I heard about another parent with a child facing some kind of health or developmental challenge, I would literally get sick with grief for them.

And then I thought about all of the sorrows out there that aren't at all similar to mine. Things I've never had to bear and hopefully never will. I've never endured abuse or neglect. I've never witnessed violence or starvation. The list of things I haven't had to see or feel is so much weightier than the burdens I'm actually carrying.

It's almost like real suffering pulls back a screen that usually hangs between us and 'unrelated' pain. The screen isn't a bad thing. It's protective and enables us to focus on things we can't when we're hurting. But pulling the screen back isn't a bad thing, either. It invites a depth of compassion that just isn't possible otherwise. It creates a vulnerability that recognizes the vulnerability of others in a new way. And instead of being overcome by all of the suffering in the world (though it is overwhelming), you gain a kind of perspective about your own suffering and how it fits in to this much bigger thing going on. Because a big, deep hurt seems to swell and swell and fill your whole world sometimes. But recognizing all of the other sorrows out there can actually move you forward, causing you to think about where you want your suffering to go, what you want it to do, how you want it to work for you and for other sufferers.

I don't know if there is necessarily anything to take away from this. I certainly don't advocate seeking out hardship in order to better understand your suffering friends, but maybe it does give some insight into what Jesus was talking about when he said "Blessed are the poor in spirit." Not that anyone wants to be beat down, hurting, or crushed in spirit. But, in the true fashion of a redeeming God, not even our worst experiences have to be just painful and nothing more. Instead, we get a potential gift -- a new way of seeing the world that is maybe closer to the way God sees it.

Tuesday, April 20, 2010

Our Week So Far

We started off early yesterday with a visit from Collin's nutritional therapist at 8:15 in the morning! He has gained half a pound and grown a half inch, which puts him ABOVE THE 5TH PERCENTILE!!! His head growth has stalled over the past few weeks and is still below the 3rd percentile, but he can only be awesome at so many things at a time.

At 9:00, the rest of Collin's beloved therapists started showing up for his one-year IFSP (Individual Family Service Plan) meeting. We looked back at our goals from 6 months ago, tweaked some, added some, and distributed visits among the therapists according to Collin's needs. One exciting change is that we discharged his speech therapist so that Collin can participate in a study she is conducting on VitalStim therapy in children. No research has been done on this kind of therapy in children, but I know of some positive anecdotal evidence from other parents and we cleared it with Collin's neurologist before proceeding. Our hope is that the treatment will help to strengthen and consequently coordinate Collin's weak facial and throat muscles, allowing him to start eating by mouth. His first session is this afternoon!

There is a bittersweet aspect to these meetings as well. It's difficult never to be able to check off a concern or say that a strategy isn't needed anymore because a goal has been accomplished. Also, the one-year meeting is unique in that it requires a Five Area Developmental Assessment to be completed. We used the Hawaii Early Learning Profile Strands to complete the assessment and Collin ended up in the 0-6 month range for virtually all relevant areas. I don't think I need to explain why that is hard. But it certainly wasn't devastating. It's not like I didn't know. People in public ask how old Collin is and I tell them and they raise their eyebrows. Because he doesn't act like a 14-month-old.

But the thing is - and we all acknowledged this at the meeting - that Collin IS developing. It's undeniable. It's just not happening at the pace or in ways that we can check off of a list. How do you quantify that 6 months ago, Collin didn't interact in any way with the world around him? That only three months ago, he rarely opened his eyes and had only recently started smiling consistently? He's a different kid in a lot of ways now - so much more conscious of the world around him and responsive to it. There's no box to check for that.

The rest of our day was calm and boring - 'just how we like it', as my friend Erica and I say - and we got up early this morning to try to beat the rush at the Children's Hospital Lab to get some bloodwork in preparation for Collin's neuro appointment on Thursday. Everything was incredibly smooth during registration and we were even able to get all the blood from a finger stick, but I didn't realize they were going to need a urine sample or I would have put a urine bag on him at home (of course I keep urine bags at home, don't you?). Because something about sticking that thing on makes Collin the anti-pee-er. He just won't do it. Granted, I don't know what it's like to have a circle of adhesive with a big plastic bag pressed on my private parts, but the alternative is a catheter, so I don't have a whole lot of sympathy. So we sat and sat. And sat. I finished a book. And watched CNN. And all of the fascinating people who flow through a place like a children's hospital. After over an hour, I decided to get a specimen cup and just collect the urine at home and bring it back down. So we packed up and trekked back to the TOP FLOOR of the parking garage. I checked Collin one last time to make sure he hadn't peed, then put everything in the car and was buckling him in his carseat when - you guessed it - he did it. I must have been slap happy from the morning, because I laughed and laughed as I took off the bag and collected the pee in the specimen cup. We got a good laugh from the nurses in the lab, too.

Our last stop on the way home was at the compounding pharmacy. I may have mentioned once or twice or a dozen times on here how much I love our compounding pharmacy. You cannot imagine a more friendly or personable group of people. They have saved our skin on so many occasions and the medicine I was picking up wasn't even a compounded drug - it was just a sugar free version of a very common drug. It's just that CVS and Walgreens can't do anything that their computer doesn't tell them to do and since their warehouse didn't have it, they just said that we were out of luck. Our compounding pharmacy found it in Texas and had it overnighted at no extra charge to us. They all know my name and Collin's name and the pharmacist stops what he's doing when he hears us come in so he can come see Collin. It's people like that scattered throughout the medical world that make this whole experience so, so much easier.

Monday, April 19, 2010

Big Weekend

Collin's first Thunder Over Louisville was a resounding success. We spent the day at Slugger Field with Nana and Grandad, using tickets Kyle was lucky enough to get from work. Collin's Aunt Tess and Uncle Kevin were able to get tickets too, so it was a family affair. We all had a great time watching the Bats lose and taking in the air show. The Jimmy Buffet tribute band concert was a little less enjoyable, though.

Collin was a true champ during such a long day and even took a little nap on my lap. The evening got pretty chilly and we all lost our enthusiasm for fireworks as the temperature dropped and it got later and later. Finally, after waiting all day, we left halfway through the show. Maybe not the smartest decision, but oh well. In retrospect, we probably would have left around 8 so as to be home and warm and comfy in time to watch the fireworks on TV.

Sunday, our good friends the Popps came by on a visit from Chicago. Collin's buddy Sebastian tickled his feet and gave him some nice smooches and they talked loudly to each other without caring much about what the rest of us had to say. The time went by much too quickly and the Popps had to speed off to the airport. I'm assuming they made it home.

Finally, Collin rounded off our exciting weekend by having a tonic-clonic seizure in the middle of the night Sunday. I had leapt out of bed and was halfway down the hallway with Kyle before I realized what was going on. We just caught the very end of it, but Collin was a little shaken. Kyle set the pack-n-play up in our room (it had only been Collin's second night in his own bed over the last several weeks) and we were all eventually able to get back to sleep.

We have a somewhat crazy week ahead of us with meetings, appointments, and more, but we're hoping it will yield some helpful information for moving ahead.

Friday, April 16, 2010

Who Knows

We haven't seen any seizures since Wednesday morning. This is highly unusual, since Collin historically just keeps on going once he starts. So, this could mean that the ketogenic diet is working or that the seizure was brought on by some kind of momentary stress that we couldn't identify. Either way, I don't care. ;-)

We are now getting laughs DAILY from Collin, mostly in response to tickles and shakes and other fun stuff. Maybe the most exciting thing for me, though, is that I think Collin is starting to realize that the things he's seeing are actually there. This might sound like a strange thing to get excited about, but if it's true, it could mean the beginning of so many other things. He is really using his eyes together and you can see him staring and thinking so hard. A couple of times, it has even resulted in a smile, which I take to mean that he was able to make sense of something. Here's hoping.

Wednesday, April 14, 2010

Like a Trip to the Dentist

Now see, this is why it always makes me nervous to do glowing blog entries like the last one.

This morning I was moving the blanket off of Collin to put something in his feeding tube when he startled out of his sleep and had his first tonic-clonic (grand mal) seizure.

At first, I was too shocked to be scared and couldn't figure out what the heck was going on, but then I yelled for Kyle and picked Collin up and tried to pay attention to what was going on so I could report it later if I needed to and so we could decide what to do if it didn't stop. Luckily, the jerking subsided in under a minute. I had to rush out to the dentist at that point and he had another one while I was gone, so now he is pretty out of it.

Let me just take a moment here to comment on how ridiculous and excruciating (not physically) my time at the dentist was this morning. I cannot emphasize enough how great it would be to have a box you can check when signing in that says "I prefer not to make conversation". I am never good at or fond of this part of the dentist visit and this morning I think I would have preferred a filling to it. Going on very little sleep and reeling from the morning's development, the last thing I wanted to do was make small talk; but the hygienist, bless her heart, insisted. At one point, after pushing and pushing about what Collin is doing now that he's one, she must have seen a note she wrote to herself the last time I was in, because she stopped suddenly and asked, "Now, is your son special needs?" I blinked a couple of times and said, "He has them." "Has what?" "Special needs." "Oh! So is he going to walk?" Slow blink. "We don't know." "So, you're just going to have to wait and see?" "I guess so." And I was there for an hour.

So ANYWAY. Now comes the fun part when we try to decide what to do. This usually starts with trying to figure out what might have caused the seizures in the first place. Could it be that we started giving him his oil a new way last night? Could it be that his Keppra wean is over? Could it be something completely different that we have no way of discovering and only coincidentally happened this morning? Yes, yes, and yes. You can see why determining a course of action is so maddening. How do you know what to do when you have no idea what's going on? You don't know. You never know anything.

So the plan (for now) is to hold tight for a day and see what happens. If it's something that will work itself out, we don't want to jump the gun with meds, and since the seizures aren't too long at this point (although any seizure is too long, don't get me wrong) we don't feel incredibly pressured to do something different right away. Plus, we're still in the middle of tweaking his ketogenic diet and will hopefully be adding branched chain amino acids by the end of the week (another post on that later). Luckily, we've gotten good at laying low and plan on doing just that at least for today.

Tuesday, April 13, 2010

Slacker

SOMEbody's been slacking on the blog.

I'm pointing at Collin.

We've had a surprisingly delightful week, despite the fact that Collin now has seven teeth coming in at once and likes to stay up late at night talking about it. But it did take a while to recover from this most recent stint of seizures and it's only in the past few days that I'm starting to feel like I'm crawling back out of my hole. Training for our 5K is going really well. I overcame my knee injury with some good shoes and some coaching from Collin's Aunt Tess and I think I will definitely be able to make it through without throwing up or dying. So, that's good.

Collin is also at the very end of his Keppra wean. I know it's not what a lot of people would have done, but we continued Collin's wean throughout his recent seizure episodes and we feel really good about that decision, because the seizures came under control with a slightly increased ratio and no more meds. We feel like we've seen a big difference in how vocal and interactive Collin is. It didn't take long after the seizures passed for his new laugh to come back. We had only been able to get laughs with the same old bulb-syringe-in-the-mouth trick, but last night I was rubbing his head after a long walk (on which he sang/talked/yelled from beginning to end) and this is what happened.

Back in the Saddle Again from Annie Kratzsch on Vimeo.



We're going to give Collin a while to get used to being off of Keppra before we start weaning the clonazepam and we're continuing to tweak his diet to make it more reliable and digestible. We're also keeping up the best we can with his NACD program and have seen great improvements with his eye control and rolling skills. He now does most of the work himself in our rolling exercises and has even started trying to move (albeit very slightly) when he's laying on his tummy. Collin has also spent a lot of time out in the beautiful spring weather, mostly barking orders at me and Kyle while we work in the yard.

Tuesday, April 6, 2010

Whisper

We may have had a seizure free day yesterday. It's hard to tell for sure, but I didn't see any.

We saw a significant decrease in seizures right away after going up in ratio, but he didn't seem to be feeling well and was still having a handful a day. So we narrowed in on his crazy teething (we have 5 coming in right now) and put him on Tylenol around the clock with oragel swabs in between. He seemed to relax within a day and has been having more restful sleep, which we are hoping is helping to kick these things.

Collin still doesn't seem quite like himself (though he is getting a little more smily and vocal again). We're guessing this is owing to the teething, the weeks of seizures, and the nausea/sleepiness that comes with going up in ratio. We're trying to be patient and give him time to adjust. It's not easy, but it seems to have worked so far, since we haven't had to load him up on meds at any point of this recent stint of seizures.

In other news, Collin had his second Easter. He kindly passed his Easter candy on to the rest of us since the ketogenic diet doesn't exactly allow for such goodness. Luckily, his Easter basket included a soft duck, a jingle Easter egg I made him, some shiny beads, colorful feathers to play with, and a stuffed cardinal that makes the cardinal call when you squeeze it. Jack. Pot.

I couldn't help but think about last year, when I was fighting my own battle and didn't even know it was Easter and didn't get to get my son anything for his first holiday. We were adjusting to g-tube feedings and were still unaware of Collin's underlying neurological issues.

Once again, we're thankful that it's this year and not last year.