But, I couldn't not acknowledge this day...or this entire week for that matter. I mean, it's sole reason behind this blog.
Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.
I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.
Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.
Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.
I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.
It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.
We'll get there too.
Thursday, May 20, 2010
Thursday, May 13, 2010
Jay Mohr on Diaper Duty
I had to lighten the mood a bit since my last post. This definitely made me laugh! :)
A must read for any of you potty training parents...or actually just about anyone with a sense of humor!
Jay Mohr on Diaper Duty
Jay Mohr on Diaper Duty
Thursday, May 6, 2010
In honor of Mother's Day
So, this Mother's Day weekend has already gotten off to a terrible start. I woke to a text from my mother telling me to call her when I got up. I knew before even calling what happened. My great grandmother was gone. I can't even describe what an emotional year this has been with both sides of my family. We've lost too many loved ones lately...Chad's family included. And to make matters worse, it's almost Mother's Day. And I've had the looming reminder that we buried my other grandmother eight years ago this week. There's more. Just last week Chad lost his aunt and two days later I lost a great great aunt (my great grandmother's sister). All mothers. And grandmothers. Two were great grandmothers. And one a great great grandmother. All dearly loved and all will be dearly missed this Mother's Day.
Sunday, May 2, 2010
Is it May already?!
Yikes, has it really been that long since my last post? I've been so buried under the day-to-day that I didn't realize it's been over a month.
I have to say...it's been a relief to have had a break though. Freeing myself from the nonstop obsession with IS has helped me. Not that I don't still think about it nearly every minute of every day, but it's different when I'm not swimming in it like I was before. I like the new me. I get more done around the house, I spend more time with Austin, and I'm finding new interests (like being a rockstar in my spare time -a lot of you will know what I'm talking about!)...
Once again though, I have to say...I miss the close contact I had with everyone on here. I thought of little Trevy on his birthday (a date that's permanently stamped into my mind because we are birthday buddies) and wondered how his mommy was handling this momentous milestone. I've had Bennett in my thoughts as well...curious how his new school has been for him. And precious Sophie. Her one year mark since the surgery is fast approaching. What a big girl she is! I've especially thought of Maddie and how she's done post-diet. And big girl sitter Madie...and the sweetheart Colby. All these kiddos have always been on my mind. But, I haven't had the courage to dive back into that. Scared I would get back into old habits of the seizure obsession and disorder comparisons...knowing the fears I've worked so hard to conquer would most likely creep back in to haunt me again. I just couldn't go back there just yet. Trying to keep a safe distance for my family's sake, because I know they prefer me to be here rather than seizure land. Not that checking up on our buddies is a bad thing. But, three of our buddies are seizure free now -which is WONDERFUL! But, that's where my fear comes in. I get scared of never getting there. Comparing and obsessing and despairing and pitying my situation. That was not working for me. I LOVE these kids. I love their parents. I love that they have had the chance to try and start over. I've just needed to live here in my own reality for a while and not compare Austin to other kids. And it has helped me celebrate the smaller things he accomplished so much more.
Anyway, on to business...We have seen Austin transform again since the Lamictal wean was complete. Blowing noises are back (he stopped a couple weeks into the start of the med and started back two days after coming off)! Interaction is considerably improved. Smiles, laughs, giggles, toy banging and functioning!! Lots of great new moments around here!
The diet is still going well. My mom and I have a "date" about every other Saturday where we make Austin dinners all day to freeze. It makes this SO much easier. Usually the only meal I will prepare on the spot is breakfast -the others are pre-made. She has been a tremendous help! She knows when I'm starting to wear down and always steps in and helps...whether it's helping prepare food, buying new contraptions to simplify my life (see pic below), or watching him for me for the night so I can relax a bit. I honestly couldn't handle any of this diet or disorder without her.
Last night was the best surprise ever...no noticeable seizures for at least 5 waking hours!! Yeah! And this morning started awesome as well with only 2 seizures in 3 hours.
We will continue to tweak the diet and medication to get even more improvement. My hope is for him to get off the last two meds sometime soon. We saw cognitive AND seizure improvement after the Lamictal wean. And thinking back, the best he's ever done (seizure wise and cognitively) was when he was on the least amount of AEDs. I'd like to see how the diet will work for him without the meds. There are sometimes more improvements in kids once all meds are removed. It's a goal anyway.
So, that's where we are. Finally moving in the right direction!
Austin's new "no helmet zone".
Saturday, March 27, 2010
The long haul
Okay, so my imagination was bigger than my common sense. I had big plans of keeping in touch, updating on our progress throughout the diet, etc. Obviously, I underestimated the time this would require. Still totally worth it though!
We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.
The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.
What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.
There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.
We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!
So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.
We'll most likely be sticking with it for a while.
We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.
The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.
What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.
There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.
We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!
So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.
We'll most likely be sticking with it for a while.
Friday, February 19, 2010
Where to start...
This new, rigid schedule has me spinning...
We still see some improvement, although some days are better than others. I'm back to my ridiculous counting habits trying to spot trends in improvement and decline. Nothing to bank on yet...I see great hours that leave me excited and filled with optimism, only to see the tally marks fill the page the next hour.
Still, even with these horrific hours, the grand total for the day consistently stays under 150 (worst day so far 149 -the day he was extremely acidodic...the best 61). On average he will have around 80-90. Not great. But better.
There are questions regarding, well, just about everything. From the food ingredients to his lotion. What is keto-friendly what is not? I had no idea that something as simple as chapstick or toothpaste could throw him out of ketosis or cause increased seizure activity.
So because of this, every issue seems to be magnified...like his irregularity (fun times). Even more so when no one seems to be available to answer these questions for me. Who would have thought that upon getting released from the hospital (before a holiday weekend nonetheless), that his epi would be going on vacation or that the doctor over the diet would be out sick for an entire week! Of course, the dietician can only tell me what's safe for the diet -not what to give him or how much.
I'm pretty much bound to the house (and practically the kitchen) at least until this lifestyle becomes a bit more familiar. There are ALWAYS dishes in the sink since every meal requires nearly a cabinet full of cups and bowls for measuring, cooking, serving, etc. But, all of this I will gladly do as long as it seems to be helping. Seizure freedom is the goal...but even relief is welcomed right now.
It's exhausting. But, not nearly as exhausting as seeing forceful drops and falls every 10 minutes -which is where we were. He was clustering or dropping literally every time I turned around. That was much more stressful than checking for ketones, weighing food, cooking, and adding up fluids.
Even though my having to keep such a watchful eye for seizures and all the new added responsibilities seems to be more than I can handle at times (if you only knew the state of my laundry pile up!), seeing him go two hours without a seizure is more than worth it.
We still see some improvement, although some days are better than others. I'm back to my ridiculous counting habits trying to spot trends in improvement and decline. Nothing to bank on yet...I see great hours that leave me excited and filled with optimism, only to see the tally marks fill the page the next hour.
Still, even with these horrific hours, the grand total for the day consistently stays under 150 (worst day so far 149 -the day he was extremely acidodic...the best 61). On average he will have around 80-90. Not great. But better.
There are questions regarding, well, just about everything. From the food ingredients to his lotion. What is keto-friendly what is not? I had no idea that something as simple as chapstick or toothpaste could throw him out of ketosis or cause increased seizure activity.
So because of this, every issue seems to be magnified...like his irregularity (fun times). Even more so when no one seems to be available to answer these questions for me. Who would have thought that upon getting released from the hospital (before a holiday weekend nonetheless), that his epi would be going on vacation or that the doctor over the diet would be out sick for an entire week! Of course, the dietician can only tell me what's safe for the diet -not what to give him or how much.
I'm pretty much bound to the house (and practically the kitchen) at least until this lifestyle becomes a bit more familiar. There are ALWAYS dishes in the sink since every meal requires nearly a cabinet full of cups and bowls for measuring, cooking, serving, etc. But, all of this I will gladly do as long as it seems to be helping. Seizure freedom is the goal...but even relief is welcomed right now.
It's exhausting. But, not nearly as exhausting as seeing forceful drops and falls every 10 minutes -which is where we were. He was clustering or dropping literally every time I turned around. That was much more stressful than checking for ketones, weighing food, cooking, and adding up fluids.
Even though my having to keep such a watchful eye for seizures and all the new added responsibilities seems to be more than I can handle at times (if you only knew the state of my laundry pile up!), seeing him go two hours without a seizure is more than worth it.
Tuesday, February 16, 2010
Finally...
...something that seems to be at least helping the seizures.
They are still very much here, and very much a part of everyday...but they are better.
There was some improvement before we even left the hospital (I didn't want to get ahead of myself and post it though), and at least 50% or more reduction until Sunday. Sunday and Monday were a bit higher, but today is much better. I've only seen 34 so far (before the diet, he'd already had over a hundred by this time).
It's still way too early to make any assumptions about how well it's going to work for Austin, but it's looking very promising at least right now. I've never seen such consistent results from any treatment since he began having seizures almost two years ago. Even though he's been topping out between 60-100 (average) a day this past week, and this would have been extremely high for him a year ago, it's quite an improvement. They had been steadily increasing since August, and by Christmas, I would estimate he was having somewhere in the range of 200-300 a day. So, 34 at 4:30 pm is wonderful for him right now.
Like I said though...still too early to draw any conclusions...but he's doing very well right now. His energy level is still quite low, but there seems to be improvement there each day as well.
I'm just going to take this one day at a time and see what happens. Hopefully, we will continue to see more and more improvement...
They are still very much here, and very much a part of everyday...but they are better.
There was some improvement before we even left the hospital (I didn't want to get ahead of myself and post it though), and at least 50% or more reduction until Sunday. Sunday and Monday were a bit higher, but today is much better. I've only seen 34 so far (before the diet, he'd already had over a hundred by this time).
It's still way too early to make any assumptions about how well it's going to work for Austin, but it's looking very promising at least right now. I've never seen such consistent results from any treatment since he began having seizures almost two years ago. Even though he's been topping out between 60-100 (average) a day this past week, and this would have been extremely high for him a year ago, it's quite an improvement. They had been steadily increasing since August, and by Christmas, I would estimate he was having somewhere in the range of 200-300 a day. So, 34 at 4:30 pm is wonderful for him right now.
Like I said though...still too early to draw any conclusions...but he's doing very well right now. His energy level is still quite low, but there seems to be improvement there each day as well.
I'm just going to take this one day at a time and see what happens. Hopefully, we will continue to see more and more improvement...
Friday, February 12, 2010
keto is underway
I thought I'd let everyone know that we have initiated the ketogenic diet and arrived home from the hospital. All is well so far.
As with any hospital stay, we were stressed out of our minds. I read up on the keto diet before going, but there were still many surprising twists and turns. For one, Austin became extremely acidotic immediately. Our clinic does not require a long fasting period, but Austin was an exception since he had to fast for sedation for the MRI and LP. He started getting moderate ketones within 6 hours of starting the diet and large ketones soon after that. The next morning he (and his bedding) were covered with the previous night's dinner...yuck!
But, with meds, we've been able to keep the acidosis under control and everything else is looking good. He seems pretty disappointed with the quantity of meals (he's quite a hefty eater), and the fact that water is his main source of fluid...but other than that, he's adjusting well. A little weak and sluggish, but that was to be expected as well.
A few things I've noticed about myself and dealing with the ketogenic diet...
#1 -I MUST be organized!!! To keep this from consuming me & my entire day, I've found that the more organized, the better.
#2 -I MUST stay positive!! If this is going to be our new way of life for the next few months (or even years), I'm going to have to accept the changes and make the best of it.
#3 -Creativity is important! Some of the ingredients alone are enough to make anyone want to gag, so incorporating them in different, exciting ways is going to be the key to getting that heavy cream and canola oil down the hatch! :)
#4 -I've gotta keep the faith! Probably the most important because with it, all the others will fall into place much more easily. Austin's miracle treatment is out there, and I must treat this like this is it. Otherwise, I may not have the motivation to stay organized, or the energy to stay positive, or the patience to get creative.
I must applaud every parent who has taken on this diet and stuck with it. It's much more involved than I ever imagined...and I expected it to be difficult and tedious.
So...that's our latest.
Thursday, January 28, 2010
In case you were wondering...
Yes, we're still here.
I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...
The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.
I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.
So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.
I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.
I'll try to check back in soon...
I've been SO out of touch with just about everyone these days. I've got a boatload of reasons, but I'll spare you...
The main reason...there just hasn't been much to report. Seizures have been extremely high (& extremely intense) so my eyes stay on Austin all day (sometimes all night) everyday. In my spare time I completely shut down and focus on doing anything I can to distract myself from thinking about seizures. So, there's the condensed version.
I'm updating because I actually have something new. We had a 23-hr EMU study done at TCH last week (that's an EEG for anyone who doesn't already know). Still no hypps, but still no focus either. Still generalized...blah, blah, blah. It didn't give us much to go on in the way of treatment options.
So...after much discussion, debate, and procrastination, we've decided to go ahead with the ketogenic diet. We check in Sunday, Feb. 7 and will be there until that Wednesday or Thursday. While we're there, we'll most likely get a repeat MRI scan and lumbar puncture.
I'm sorry I haven't been better at keeping in touch with everyone. I've seriously needed a break from this though. It all just became too much to handle -and I'm still working on it.
I'll try to check back in soon...
Friday, November 13, 2009
The Good News
I guess I wouldn't blame you if you've forgotten about us. There have been very few reminders on my part to keep you up to speed. But, I guess if you're reading, we haven't been completely forgotten, huh? :)
You know how it goes, after such a long lapse it's hard to recap the entire series of events, but I'll do my best.
The past few weeks have had me either completely away from the computer or just plain too tired to sit and focus on it. It's been my last priority I guess I could say.
My old blogging used to serve as my own personal (and free of charge) therapy, but I'm just not thriving on it like before. I'd like to keep friends and family in the loop, but it's doubtful that I'll be releasing much of that old emotion for a while. Just not feelin' it anymore. I have been popping in occasionally to my favorite blogs but haven't quite had the concentration or energy to compose a comment.
So...for the updates.
We've started a new med, Lamictal. Slow intro on this one. Going up by 5mg twice a day each week. I believe we're at Week 4 and have two more to go until we reach the recommended treatable dose of 30mg twice daily.
We had a visit with the epilepsy specialist on 10/30. Besides my being dog tired and sick that day and him telling us that Austin will most likely die without immunizations, it was routine. Could have had this appointment over the phone. No labs, no eeg, no new meds to discuss (since we'd already started Lamictal two weeks prior)...just a "keep with the plan" and "see ya in three months". Oh, and the "you need to get Austin's immunizations up to date or he'll die". That I wasn't really fond of. I'm not a moron. I think I know the vaccs are important. But, the rock and the hard place saying pops into mind. Enough said.
I actually made an appointment with the pedi for a "revised catch up vaccs schedule", but I ended up being a no-show and rescheduled. He wants to give him the MMR and Varicella to start. I've got until the 20th to either get them or back out again. We'll see. No easy decision.
On the seizure front...not much to report there. Same ol' I guess. Although we are seeing some variations of his typical presentations. Instead of a quick head drop sometimes, he freezes with his head down and eyes locked in place...sometimes arms frozen in extension. This is new. About three weeks new. He doesn't have many of those in comparison to the more common drops and clusters though. Oh, and I've been seeing some head/arm jerks to the right. Also new.
Development has it's ups and downs. Progress here, regression there. Changes from week to week really. Eating suffered for a while, now it's number one in terms of progress. Now, play interest is low. Oral up one week...down this week. Never know with this kiddo.
I guess the most noteworthy piece to mention has been my continued focus on Christian Healings & Miracles. That's where my attention has been lately. Reading, studying, practicing, and last weekend attending a seminar in DFW area (about a 5-6 hr drive from here). I have books, cds, dvds, cards, prayer cloths, you name it. I've got it. And I've poured every ounce of myself into these. And have been just trying to spend some time with Austin minus the distraction of what's going on in cyberspace. Trying to keep the positives rolling.
It's probably the main reason for my hiatus. But certainly not the only. In the past three weeks, we've had birthdays (2), well checks, an epi visit in Houston, a touch of sickness, a highly anticipated trip to Dallas...and a death of a beloved family member, Chad's grandfather, Cowboy. So, to say we've had our hands full is an understatement.
I so wanted him to hang around until I got equipped with the knowledge and understanding of this healing thing. I'm still learning. After countless hours of prayer & reading & listening, and a six hour seminar, it's still a work in progress. It's actually a very simple concept, however, it can get tricky and complex to anyone raised under different teachings. It's certainly not alternative...I don't want anyone to get the wrong idea here. It's just not what I was taught in church. It's not twisted interpretations or radical thinking. It's just taking the Gospels and bringing them to life...here...today. It's been quite the task of unlearning a lot of previous beliefs. One being that a miraculous healing is like winning the lottery. That some people will just get lucky. That's so not supposed to be the case. It should be flowing just as frequently and should be just as accepted as someone getting saved.
And I'm not going to force this on all my readers (if I have any left lol). I'm just simply bringing it out in the open where anyone who may be interested can learn what I have. Any many will not want to. And that's cool. Religious views cannot be forced. Some of you will not accept this until you either a) see it or b) seek it.
This blog was created (in the beginning -before the true reality hit and my emotions took over) to serve as a central place for everything Austin. Austin's progress with IS, development, etc. I'm reverting (from my soap box) and holding to that from now on. I just wanted to give you an idea on where I am in the scheme of things and let you know that I am happy to share if you want to learn more. Freely I have received, freely I will give. Just drop me an email ( chadburnett@att.net ). I'm tellin' ya, it's totally worth a look.
Heb 11:1
You know how it goes, after such a long lapse it's hard to recap the entire series of events, but I'll do my best.
The past few weeks have had me either completely away from the computer or just plain too tired to sit and focus on it. It's been my last priority I guess I could say.
My old blogging used to serve as my own personal (and free of charge) therapy, but I'm just not thriving on it like before. I'd like to keep friends and family in the loop, but it's doubtful that I'll be releasing much of that old emotion for a while. Just not feelin' it anymore. I have been popping in occasionally to my favorite blogs but haven't quite had the concentration or energy to compose a comment.
So...for the updates.
We've started a new med, Lamictal. Slow intro on this one. Going up by 5mg twice a day each week. I believe we're at Week 4 and have two more to go until we reach the recommended treatable dose of 30mg twice daily.
We had a visit with the epilepsy specialist on 10/30. Besides my being dog tired and sick that day and him telling us that Austin will most likely die without immunizations, it was routine. Could have had this appointment over the phone. No labs, no eeg, no new meds to discuss (since we'd already started Lamictal two weeks prior)...just a "keep with the plan" and "see ya in three months". Oh, and the "you need to get Austin's immunizations up to date or he'll die". That I wasn't really fond of. I'm not a moron. I think I know the vaccs are important. But, the rock and the hard place saying pops into mind. Enough said.
I actually made an appointment with the pedi for a "revised catch up vaccs schedule", but I ended up being a no-show and rescheduled. He wants to give him the MMR and Varicella to start. I've got until the 20th to either get them or back out again. We'll see. No easy decision.
On the seizure front...not much to report there. Same ol' I guess. Although we are seeing some variations of his typical presentations. Instead of a quick head drop sometimes, he freezes with his head down and eyes locked in place...sometimes arms frozen in extension. This is new. About three weeks new. He doesn't have many of those in comparison to the more common drops and clusters though. Oh, and I've been seeing some head/arm jerks to the right. Also new.
Development has it's ups and downs. Progress here, regression there. Changes from week to week really. Eating suffered for a while, now it's number one in terms of progress. Now, play interest is low. Oral up one week...down this week. Never know with this kiddo.
I guess the most noteworthy piece to mention has been my continued focus on Christian Healings & Miracles. That's where my attention has been lately. Reading, studying, practicing, and last weekend attending a seminar in DFW area (about a 5-6 hr drive from here). I have books, cds, dvds, cards, prayer cloths, you name it. I've got it. And I've poured every ounce of myself into these. And have been just trying to spend some time with Austin minus the distraction of what's going on in cyberspace. Trying to keep the positives rolling.
It's probably the main reason for my hiatus. But certainly not the only. In the past three weeks, we've had birthdays (2), well checks, an epi visit in Houston, a touch of sickness, a highly anticipated trip to Dallas...and a death of a beloved family member, Chad's grandfather, Cowboy. So, to say we've had our hands full is an understatement.
I so wanted him to hang around until I got equipped with the knowledge and understanding of this healing thing. I'm still learning. After countless hours of prayer & reading & listening, and a six hour seminar, it's still a work in progress. It's actually a very simple concept, however, it can get tricky and complex to anyone raised under different teachings. It's certainly not alternative...I don't want anyone to get the wrong idea here. It's just not what I was taught in church. It's not twisted interpretations or radical thinking. It's just taking the Gospels and bringing them to life...here...today. It's been quite the task of unlearning a lot of previous beliefs. One being that a miraculous healing is like winning the lottery. That some people will just get lucky. That's so not supposed to be the case. It should be flowing just as frequently and should be just as accepted as someone getting saved.
And I'm not going to force this on all my readers (if I have any left lol). I'm just simply bringing it out in the open where anyone who may be interested can learn what I have. Any many will not want to. And that's cool. Religious views cannot be forced. Some of you will not accept this until you either a) see it or b) seek it.
This blog was created (in the beginning -before the true reality hit and my emotions took over) to serve as a central place for everything Austin. Austin's progress with IS, development, etc. I'm reverting (from my soap box) and holding to that from now on. I just wanted to give you an idea on where I am in the scheme of things and let you know that I am happy to share if you want to learn more. Freely I have received, freely I will give. Just drop me an email ( chadburnett@att.net ). I'm tellin' ya, it's totally worth a look.
Heb 11:1
Monday, October 26, 2009
two
Well, the big day came and went. He's officially two as of Sunday. Two. Can't believe it, I really can't. This year has completely flown by. Yet, each day seems to drag on and blur into the next. Weird.
Honestly, the anticipation was much greater than the satisfaction it produced. Austin was not in the best of moods. At all. We had increased his Zonegran the night before the party, so he was groggy and over stimulated by the commotion. Not that we even had many people here. We chose to do a small, intimate celebration with just close family. Last year, having about 30 people cramped in my not so big house was a challenge. Visiting with friends and family I hadn't seen in a while, coupled with making sure everything ran smoothly, and not to mention the cranky birthday boy who had refused to take a nap prior...I think I was over stimulated! Anyway, small and toned down was the goal this year. I wanted to spend more time with Austin without worrying about making sure the chip bowl was full and that everyone had something to drink. It would have been perfect had Austin been a bit more alert. The seizures on Friday were horrendous which prompted me to make that tough decision. I had to choose between the seizures or alertness. The seizures won.
I don't think I got a single photo with a smile. But, that's okay. Next year will be better. I know it.
He didn't scream through "Happy Birthday" this year. That was a plus. I don't even think he got cranky at all. Another plus. But, he wasn't himself. He tends to keep inside his shell with people around...and then there's the increased med on top of that. After everyone left, he did perk up a lot. Playing with all his new goodies and running around his play room.
Sunday was his actual birthday. I wanted that day to be just the three of us (four if you count our dogger, Bailey:) We spent it playing with new birthday toys and relaxing with the birthday boy. Seizures were much better which kept the emotions in check. I wasn't sure how I would be in that department, which is why I chose to do his birthday party the day before. So that if I did have a meltdown, I wouldn't be raining on his party.
Another difference from last year. He was able to actually feed himself the cake rather than just smash it in between his fingers. What a sight! The boy was picking up half of it and cramming it in his mouth! Definitely dug it this time around. I think we had to dip his paci in the icing last year to calm his screaming. It worked. But, he wasn't even close to eating anything that wasn't pureed, so that was the extent of it.
So, all in all, it went well. Not as grand as I was imagining, but special and memorable nonetheless. He'll only turn two once and we did everything in our power to embrace and capture it.
Honestly, the anticipation was much greater than the satisfaction it produced. Austin was not in the best of moods. At all. We had increased his Zonegran the night before the party, so he was groggy and over stimulated by the commotion. Not that we even had many people here. We chose to do a small, intimate celebration with just close family. Last year, having about 30 people cramped in my not so big house was a challenge. Visiting with friends and family I hadn't seen in a while, coupled with making sure everything ran smoothly, and not to mention the cranky birthday boy who had refused to take a nap prior...I think I was over stimulated! Anyway, small and toned down was the goal this year. I wanted to spend more time with Austin without worrying about making sure the chip bowl was full and that everyone had something to drink. It would have been perfect had Austin been a bit more alert. The seizures on Friday were horrendous which prompted me to make that tough decision. I had to choose between the seizures or alertness. The seizures won.
I don't think I got a single photo with a smile. But, that's okay. Next year will be better. I know it.
He didn't scream through "Happy Birthday" this year. That was a plus. I don't even think he got cranky at all. Another plus. But, he wasn't himself. He tends to keep inside his shell with people around...and then there's the increased med on top of that. After everyone left, he did perk up a lot. Playing with all his new goodies and running around his play room.
Sunday was his actual birthday. I wanted that day to be just the three of us (four if you count our dogger, Bailey:) We spent it playing with new birthday toys and relaxing with the birthday boy. Seizures were much better which kept the emotions in check. I wasn't sure how I would be in that department, which is why I chose to do his birthday party the day before. So that if I did have a meltdown, I wouldn't be raining on his party.
Another difference from last year. He was able to actually feed himself the cake rather than just smash it in between his fingers. What a sight! The boy was picking up half of it and cramming it in his mouth! Definitely dug it this time around. I think we had to dip his paci in the icing last year to calm his screaming. It worked. But, he wasn't even close to eating anything that wasn't pureed, so that was the extent of it.
So, all in all, it went well. Not as grand as I was imagining, but special and memorable nonetheless. He'll only turn two once and we did everything in our power to embrace and capture it.
Friday, October 16, 2009
60 Minutes, CURE, and epilepsy
This post was taken from a fellow IS parent/blogger. I'm only copying and pasting from the letter he received from CURE. You can read his entire post here.
We have some great news to share--on Sunday, October 25, 60 Minutes will feature an in-depth examination with Katie Couric of the problems and challenges of epilepsy. The segment will feature CURE and CURE founder, Susan Axelrod and her family.
CURE supporters around the country will be gathering at "viewing parties" for this program and we hope you'll join them by settling in front of your TV to watch. (If you'd like to host your own party, please call 800.765.7118.)
This is yet one more opportunity for all of us to raise awareness in this amazing year for epilepsy! Beginning with PARADE Magazine in February, we've enjoyed tremendous exposure in Newsweek and on CNN, MSNBC, the TODAY Show and Oprah's Dr. Oz radio show.
It's clear that momentum is on our side...this is our time to change the playing field and finally begin to make the difference we've been waiting for, for far too long.
Please help spread the word about 60 Minutes and make sure the voices of the over three million Americans suffering from epilepsy are heard loud and clear.
Warm Regards,
Michelle
I'll be watching. Hope you will be too.
We have some great news to share--on Sunday, October 25, 60 Minutes will feature an in-depth examination with Katie Couric of the problems and challenges of epilepsy. The segment will feature CURE and CURE founder, Susan Axelrod and her family.
CURE supporters around the country will be gathering at "viewing parties" for this program and we hope you'll join them by settling in front of your TV to watch. (If you'd like to host your own party, please call 800.765.7118.)
This is yet one more opportunity for all of us to raise awareness in this amazing year for epilepsy! Beginning with PARADE Magazine in February, we've enjoyed tremendous exposure in Newsweek and on CNN, MSNBC, the TODAY Show and Oprah's Dr. Oz radio show.
It's clear that momentum is on our side...this is our time to change the playing field and finally begin to make the difference we've been waiting for, for far too long.
Please help spread the word about 60 Minutes and make sure the voices of the over three million Americans suffering from epilepsy are heard loud and clear.
Warm Regards,
Michelle
I'll be watching. Hope you will be too.
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