~ Colby's Corner ~

2010-08-23T15:17:00.003-04:00

I never liked the word....

Even before Colby came along 25 years ago....

Now it is simply vulgar to me....

I thought this post was amazing.....

(http://davehingsburger.blogspot.com/2010/08/people-who-are.html)

Monday, August 23, 2010

The People Who 'Are'

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people. No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.The people who 'ARE' what the 'R' word refers to have a long history. They have been torn from families and cast into institutions. They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.They have been held captive, have been enslaved, have had their being given over to the state.They are the group in society most likely to be physically, sexually and financially abused. They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts. They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt. They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.They are the least likely to ever be seen as equal, as equivalent and entirely whole. They are the victim of some of the most widespread and pervasive prejudices imaginable. They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats. They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out. They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship. That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world. That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future. That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.They are a people.They ask for respect and receive pity. They ask for fair play and are offered charity. They ask for justice and wipe spittle off their face.They ask to silence words that brutalize them and their concerns are trivialized.They ask to walk safely through their communities and yet bullies go unpunished.They ask to participate fully and they are denied access and accommodation and acceptance.And this is NOW.This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.It is a voice not yet heard.It is a voice not yet respected.It is a voice not yet understood.But it is speaking.And when it is finally heard. The world will change.The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

Dave Hingsburger

What Next?

2010-08-11T17:16:00.021-04:00

I always knew that it was a possibility....

I just didn't realize that there was a name for it....

I didn't realize that there were certain risk factors....

And I certainly didn't realize that Colby had six out of those eight risk factors....

I do have an audio and a video monitor....So I am constantly listening and watching my son until I eventually (usually finally) fall asleep in the wee hours of the morning....

He's such a light sleeper that I can't stay in his room all night long....

*Sigh*......

Nights used to be my time to breathe....at least a little easier, anyway....

Those few hours before my bedtime belonged to ME...Perhaps selfishly, but it's true........

MY TIME....

Well....

Not anymore.....

Unmasking Silent Killer in Epilepsy
By ALIYAH BARUCHIN

On July 9, 2009, Steve Wulchin went to wake his 19-year-old son, Eric, in their home in Boulder, Colo. Eric had been given a diagnosis of epilepsy three years earlier, but other than that, his father said, “there was nothing out of the ordinary.” His seizures had been well controlled; he had not had one in six months.

He was 19 years old when he died last July in his bedroom. Mr. Wulchin found Eric lying on the floor. CPR and paramedics were too late; Eric had died at about 2:30 a.m.

The cause of Eric’s death was ultimately listed as Sudep, for sudden unexplained death in epilepsy. The syndrome accounts for up to 18 percent of all deaths in people with epilepsy, by most estimates; those with poorly controlled seizures have an almost 1 in 10 chance of dying over the course of a decade.

Yet many patients and their families never hear about Sudep until someone dies. Mr. Wulchin said none of Eric’s four neurologists ever mentioned it to the family.

“The message we got back was, ‘There’s no reason why he can’t live a long and normal life,’ ” he said. “It never occurred to me that this was a possibility.”

Now, physicians, researchers, advocates and relatives like Mr. Wulchin, a technology executive, are trying to raise awareness about Sudep. One of their goals is to establish registries of deaths and autopsy results, building databases to support future research.

Sudep most often affects young adults, typically ages 20 to 40, with a history of the convulsive seizures once known as “grand mal.” Others at risk include those with difficult-to-control seizures, or seizures at night; people who take a large number of anti-epileptic medications or take them irregularly; African-Americans with epilepsy; and people with epilepsy whose I.Q. is under 70.

Many victims die in their sleep, and their bodies are often found face down. That prone position suggests that they may have had a neural, respiratory or cardiac crisis — or some combination — that left them momentarily unable, like SIDS babies, to rescue themselves from suffocating.
“After a seizure, the person is in a dramatically reduced state of awareness, and even their reflexes are reduced,” said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University.

For most people, he went on, “once your airway’s obstructed, you roll over. For people with epilepsy, they don’t.”

Epilepsy, wrapped for centuries in secrecy and stigma, has gained wide attention in recent years. Not so with Sudep; even neurologists who specialize in epilepsy sometimes feel that mentioning it to patients who aren’t at high risk may impose too much of a burden.

“Whenever I speak to a group of colleagues about telling all their patients, it’s controversial,” said Dr. Elizabeth Donner, a neurologist at the Hospital for Sick Children in Toronto and co-founder of the advocacy group Sudep Aware. “People worry about having a negative impact on the quality of life of people with epilepsy if we tell them about this.”

Mr. Wulchin and other advocates say this attitude needs to change, even in the absence of a concrete way to predict or prevent a sudden death.
“People go off and have babies knowing very well that SIDS could strike,” he said. “People have surgery and they get the standard warning that there could be adverse reactions to the anesthesia to the point of a fatality. We deal with these kinds of ambiguities all the time.”

Dr. Donner agrees. “People with epilepsy have the right to know that Sudep exists, and they have the right to be responsibly counseled about how to reduce the risk,” she said. “And actually, that doesn’t have to be a painful conversation.”

Dr. Devinsky, at N.Y.U., says he often directs at-risk patients to Britain, which has been at the forefront of Sudep awareness. There, devices like mattress alarms and structured pillows are sold to protect against death in sleep.

But just as research into epilepsy has been hindered by stigma, experts and advocates say the silence about Sudep is making it difficult to explore causes and treatments.

“I think this needs to be part of our conversation,” said Gardiner Lapham of Washington, D.C., a board member of the advocacy group Citizens United for Research in Epilepsy, whose son, Henry, died in 2008, at age 4. “The more people talk about it, the more people are going to be interested in getting to the causes of why this is occurring, and ultimately identifying ways to prevent it.”

Last year, researchers at Baylor Medical College in Houston, led by Dr. Jeffrey Noebels, discovered that a genetic mutation linked to a type of irregular heart rhythm called Long QT syndrome could also lead to seizures — suggesting that Sudep may result from electrical disruptions occurring in the brain and heart together. And this spring, the team isolated a mutation on a different gene that may cause seizure activity in the brain to direct extra impulses through the vagus nerve to the heart, making it slow and, in some cases, stop beating.

“We are hopeful the findings spur epileptologists to urge patients with epilepsy to obtain an electrocardiogram as part of their full evaluation,” Dr. Noebels said. “If it is abnormal, we expect more genetic information will be obtained, and that we can steadily build a database that tells us how important the incidence of mutations in these two genes really is.”

Steve Wulchin says he has had heart arrhythmias, and he wonders if that could have been connected to Eric’s condition.

“Had I known a year ago what I know now, I would’ve said, ‘We’re going to the cardiologist, we’re going to get you an EKG, an echocardiogram, potentially genetic testing; we’re going to get to the bottom of this,’” he said.

But neurologists say the Baylor findings are far from definitive. “I’m highly respectful of his work,” Dr. Donner said of Dr. Noebels. “I don’t want to downplay it at all. But you’re not going to suddenly go back and find samples of all these people, and all of them will have problems with this channel in the heart and the brain.

“I know sometimes it’s played up as ‘Gene for Sudep Discovered,’ ” she went on. “But Sudep is going to be multifactorial — no question.”

The lack of awareness about Sudep extends to forensic science. “I actually instructed the coroner how to classify Eric’s death, which is kind of mind-boggling when you think about it,” Mr. Wulchin said. “When I explained it, he said, ‘Well, that’s interesting; we’ve had five or six similar cases in Boulder County in the last year.’ So it leads me to believe that it’s vastly underreported.”

Dr. Donner, who is building the first registry of pediatric Sudep deaths in Canada, agrees. “I think that underreporting of Sudep cases, or underrecognition, is very, very high,” she said, adding, “I want open communications so that we can learn more.”

And Mr. Wulchin says families like his need to be more aggressive in raising overall awareness of the syndrome.

“You have to be your own best advocate, and I think the patients and the parents and the advocacy groups really have to start forcing the issue,” he said. “There’s no magic answer but awareness. Nothing’s going to happen without that.”

A version of this article appeared in print on July 27, 2010, on page D5 of the New York edition.

Mothers Lie.....

2010-05-09T21:36:00.003-04:00

For my fellow mothers on Mother's Day....

Some Mothers Get Babies With Something More....

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes.

Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news.

It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.
Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.

Frankly, sometimes you mothers scare me.

How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.

You didn't volunteer for this.

You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next.

You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall.

You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more.

You're a wonder.

Lori Borgman Monday, May 12, 2002

Safety Measures....

2010-04-29T23:28:00.017-04:00

Colby has had some tough months recently….He is continuing to have drop seizures almost every single day….His four AEDs are not really doing the trick....

About two years ago, he went from simply dropping his head for a few seconds to occasionally falling to the floor….Back then, whether he dropped his head or fell, he would lose tone very slowly….So if he did fall, he never hit “hard” ….It was more like he was just gradually lying down….

But recently, if he does fall, he loses tone very quickly….And this causes him to hit the floor with a much greater force….It has gotten to the point that I worry as much about his SAFETY as I do the seizures themselves…..I have large area rugs over hardwood floors throughout my home. I began with having a wonderful family friend to put a very think padding underneath my rug....And, despite lining the floor with six thick comforters, folded in half and surrounding him with at least a dozen big, thick pillows, he invariably seems to want to land in a tiny corner that is not padded with pillows….He will find that small six inch spot and….

BAMMMM….

He will fall forward on his face….Backwards on his head….To either side….You can’t predict….Just like you can’t predict when a seizure will hit…. He has had two bad falls….The first was a little over a year ago….He had moved all his pillow “barriers” and followed me to the kitchen, crawling, (which is his mode of mobility) and fell face down on my hardwoods and split his chin wide open….Serious enough to call EMS and get stitched….Not pretty….

I had to get more and more serious about keeping him protected….I know that many deaths from seizures are not a direct result of the seizure, but of the fall at the time of the seizure….

So we went to one of our physical therapists for suggestions….Because we want Colby to have his independence and also get his exercise, we decided on a device that is used to help with walking….A “transfer/walking belt”….It is a very wide belt that velcros and buckles around the waist….I could then hold on to it and walk beside him as he crawls, giving him extra support in case he had a seizure and fell…..

Last week, he had another accident….Again while crawling….This time with his belt on and me holding on as tight as I could….He just lost all muscle tone with a seizure and collapsed so forcefully and quickly that I wasn’t strong enough to keep him from hitting the floor….And naturally, we had just come to the 12 inch area between his bedroom rug and the hall runner….So he once again hit the hardwood….On his face….This time, he hit his mouth and his tooth punctured his bottom lip….I was able to stop the bleeding after awhile, so it didn’t require a stitch….He did have a fat lip for about five days, though…Again, not pretty….

At this point, I am terrified of letting Colby crawl around, even with the belt & my assistance….So I am lifting him up out of bed in the mornings and putting him in his wheelchair to bring him in to the den for the day, and then put him back in the chair to go to the back at bedtime….More strain on the already injured back!…I will do anything to prevent having to lift him even one more time per day….He’s ~ 100+ lbs. of dead weight!!!!

But I had to figure out a way to keep him safe throughout the day….Colby is a television addict, so we spend most of the day in our den with his toys and our favorite shows….I have hardwoods throughout my home and large area rugs in each room….So first I put very plush padding underneath….That, along with the 12 layers of folded comforters would SURELY be enough, especially with pillows completely surrounding him as well….But, as I said….as luck would have it, he seemed to continue to want to "miss" the pillows….When he fell on just the comforters, it was still with such a force that I could even feel his fall underneath my own feet!!

You may wonder why I haven’t gone the helmet route by now….You see, this is a kid that won’t even let a ball cap sit on top of his head more than five seconds!…He’ll pull it off immediately!!….Well, I have decided to order him a “Danmar” brand of helmet to try and train him to tolerate…I am not very optimistic…I know my son….But we will give it a shot….If it works, it will take a long time, I am sure….In the meantime, I knew additional safety measures were needed….

I searched all of the equipment/therapy sites and talked to the PT again….None of the therapy mats looked dense enough or thick enough…So I decided to order a 4 inch full sized dense foam mattress….It was worth a try…Especially for $79.50!!

It was delivered yesterday….Colby spent his first day trying it out today….I still have pillows surrounding the mattress, but he has a lot more room to safely move about…..He did have several seizures….And it seems to be a pretty good solution!! (Knock on wood!)….

Our lives are certainly not “normal”….My house certainly doesn’t look “normal” anymore….But you do what you have to do to protect your child….I am not thrilled about it, of course….But I’m resigned to it….We haven’t been “normal” in over 25 years….

Who’s “normal” anyway these days???……………

"The only normal people are the ones you don't know very well…” ~ Foe Ancis

No news is...no news....

2010-02-28T15:59:00.030-05:00

No news is…..

No news…...

I know…..That’s better than bad news, right?

I haven’t actually written for several months….I just don’t think anyone would be interested at this point…Because it’s just the same old thing, really….No change…..

But folks have been asking, so.....Here goes....(Yawwwnnnn...)

Actually, my family and friends are always so kind and so interested…..They ask me each time we speak…..“How’s Colby doing?” Or more specifically, “Has he had any seizures today?”…..My usual response nowadays to those two questions is “about like usual”….or a simple “Yeah…” ...Then I try and move on to something else…..Don‘t people get sick and tired of hearing it?…..I get sick and tired of saying it....of living it..….And I detest having to tell them, day after day, the same old thing…....

Of course, I don't really want people to stop asking.....

In fact, if he has had a better day, I answer with “I don’t want to talk about it….” and give a little laugh.….They all know what that means by now…..He’s had a better day, and I don’t want to “jinx it” by actually saying the words out loud….I’ve become a bit superstitious about it all.….Which is very unusual for me….But a seizure mom will try just about anything….No matter how foolish.....

We actually went for two important evaluations recently….First, we met with Dr. Cardio….We had previously seen him in September, and at that time, Colby’s echocardiogram & EKG showed some change in the heart’s blood flow…..So he increased his blood pressure Rx dose to hopefully ease that flow…..So, this last appointment showed a slight improvement…“His heart is stable” was his remark.....

You get to love that word when you are dealing with all of my son’s issues…..STABLE....You’d much rather hear something like "much improved" or, even better, “vast improvement”…..But at least there’s some relief in the fact that he's no worse…..

No better…..No worse….

So Dr. Cardio wants to see him again in mid-April….Hoping for “no change” this time in the echo results....Another "stable" is what I hope for…..Continuing to increase the meds for his heart will only take us so far…..Then comes valve replacement….Can’t go there….Just can’t imagine that at this point.….

At his second appointment, Dr. Neuro seemed disappointed once again in the success (or lack thereof) with Banzel…..We added Banzel last March to his regimin of Trileptal, Keppra and Clonipin.....It was brand new on the market at that time.….He is on the highest recommended dose at this point….1300 mg/twice a day….

So, now what, I asked....

We just have to wait on the next new “miracle” drug….Banzel was supposed to be “it”….Targeting this particular type of drop seizure that we cannot control….But “twas not meant to be”....(said VERY sarcastically...)....

Now, I'm not saying that the Banzel has not helped at all....He hasn't had another 50+ seizure day since we began this new prescription....And we haven't had to use the rescue meds near as often....So who knows how poorly he could be doing without it?....And don't get me wrong....I am thankful for even one less seizure each day....I just can't help but want more for my boy.....

Dr. Neuro examined Colby carefully and studied his seizure calendars very closely….. “Seizures sprinkled all over every day” was his comment….(Said with his beautiful accent)….You can tell his heart aches over his young patients….It is so obvious….He wants so much more for Colby….And he keeps trying….That is all I can ask of him at this point.....To be open-minded and willing to keep on trying with us.....

But SO much medication…..I sit down every Sunday night to refill his pill box for the week…..It’s the bigger pill box….The one with Breakfast, Lunch, Dinner and Bedtime compartments….With BIG individual compartments….The biggest I could find….When I finish separating the rainbow of colorful pills and look at them, in total, I am still astonished at the chemicals I must put in my son’s frail body every single day of the week, week after week....On strict schedule....

　

Yet the seizures still come….That Monster….That Beast…....

Four AEDs...."Anti-Epileptic Drugs"....(I sometimes like to type the words out because it has more of an impact).….And then the rescue meds on his worse days….It is amazing that he can even stay awake, much less function….(In his own little way, that is)….Any so-called "normal" person would be flat on their back....Completely knocked out.....But not Colby.....It is still not enough to calm the storms in his brain.....

So we continue to wait on science and research and funding and trials and on and on…..

Until something else comes along….Our “miracle”…...

Getting a little impatient here….BIG understatement....

The Beast…..Like the Eagles said....We just can’t kill it…..Maybe the best we can do is to just tame it a bit......

Christmas Blessings....

2009-12-24T20:54:00.009-05:00

It is good to be children sometimes, and never better than at Christmas, when its mighty Founder was a child Himself.....

~~Charles Dickens

Christmas Blessings from Colby......

May we all get our "Christmas Miracle" this year.....

Seizure Alert Dogs

2009-11-29T20:14:00.004-05:00

I thought I would pass this link along....

I am sure most of you have already seen it....

It is amazing what our precious animals are able to sense....

http://www.epstorm.blogspot.com/

Giving Thanks....

2009-11-23T22:54:00.014-05:00

"He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." ~~Epictetus

Giving thanks....Today and every day.....Trying to focus on what we have, rather than what we don't have.....

No need to say more.....

Another Loss

2009-11-15T10:21:00.012-05:00

We lost yet another one of "our kids" this past week......

A very precious young man, Lee....

27 years of fighting to stay alive....Overcoming crisis after crisis.....

I have known Lee for over 20 years....I had actually heard of him before I ever met him....

"There is this cute little fella named Lee"....."Lee isn't going to live long"...."Lee wasn't supposed to live more than a year or so"...."Lee is still hanging in there".....

Etc., etc....

So, this was not really unexpected....Yet, at the same time, it was surprisingly shocking.....

He was one of our "miracle kids".....Defying all of the medical "prognosticators" who regularly predict that ever-dreaded word, "lifespan".....It was a "shock" because, in our minds, he was supposed to always be here....because he had lived for so long.....against all of the odds......

I actually had the pleasure of getting to know this family a little better through my job with Easter Seals....His parents are good, strong people....Amazing people....Very well known in our community for their tireless contributions to "our little world"....Championing their son's needs and rights by fundraising, legislation, creating programs, public awareness....Whatever it took....All for their son....

And the rest of us have reaped the benefits of their dedication and hard work....

But now.....A devestated mom and dad and brother.....

What are they feeling?.....What will they do now?.....

So many questions.....So much......

Too much.....

They had two boys....I have two boys.....

My oldest son knows Lee's brother.....How is the brother doing?

How would Colby's brother handle it?......

I feel so selfish with these thoughts...Selfishly, I can't help but "go there"......I should be focusing solely on their loss and their pain....And I do think about them constantly....But I can't keep my mind from wandering and visiting that same place.....and wondering.....

It is a frightening place that I am sure all parents visit from time to time.....But in our world, it is "right there"....So close....Total uncertainty.....And, when we lose one of "our kids," we are, once again, slapped in the face with that reality.....Within Colby's group of peers, it has happened over and over and over.....We have been slapped too many times.....

And, no matter how often you convince yourself, "not my child"....No matter what "mind games" you play with yourself....Denial....Whatever....You can't help but wonder.....Who's next?

It literally sickens me......

What would I do?......

How would I feel?.....

Could I function?.....

Could I even breathe?......

I know, I know....

Lee is in a much better place than we are now.....I believe that with all of my heart....He will never have to suffer again......We all can feel comforted in that thought....

Heaven.....That perfect place where Lee is now free of his disabilities and seizures and sickness and pain and suffering......

And though we can envision Lee in this beautiful and perfect state, God also knows our hearts.....We are only human, and for his family and friends, the pain of his loss is just beginning.....

Thank you for taking the time to read about this young man and for remembering his family.....

25 Years Ago Today....

2009-10-24T13:29:00.025-04:00

A true miracle happened 25 years ago today.....

A baby boy entered into this world.....

And he would change our lives forever.....

He is beautiful.....

He understands so much more than we will ever know.....

He has met every challenge he has encountered with a brilliant smile on his face.....

He has a huge, infectious laugh.....

He radiates a wonderful sense of humor.....

He has never met a stranger.....

He knows nothing of hate or deceit or jealousy.....

He knows nothing of skin color or class or religious differences or judgement.....

He has complete trust in people…..

He has a totally pure heart.....

He has a forgiving soul.....

His love is truly genuine…..

He has a determination within him to live a joyful life.....

Though he has never walked or talked or played like most people, he has moved throughout his life with a purpose.....

And that purpose has been to teach absolute, unconditional love to every person who has had the opportunity to know him.....

God has blessed me.....

It is an honor to be your mother.....

Happy Birthday, Sweet Angel….....

60 Minutes: October 25th Episode on Epilepsy

2009-10-19T20:24:00.004-04:00

I am re-posting from a fellow blogger's recent entry...Hopefully this will be some good information....If you will be recording this, remember there may be a possible delay due to football.....Thanks SO much, Bennett's Daddy!

Cyndi

Got this letter from my CURE subscription, thought I'd pass along.

Dear Kenneth,

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

Appointments, appointments....

2009-09-30T14:37:00.004-04:00

I can’t believe it has been four months since we saw Dr. Neuro and Dr. Cardio….The days just fly by…....

These physicians come from out of town, which is wonderful…It saves us an out-of-town trip….And they always schedule our appointments back-to-back, which makes for a longer day, but one less trip. The convenience means alot, especially when you are getting old like me and have a bad back already!....You do everything you can to lift and pull as little as possible when you are dealing with 110 + pounds!....

We saw Dr. Neuro first….He gave Colby his usual thorough exam….Colby was very cooperative, as he always is….In that respect, I have always been so fortunate….In fact, I think Colby has a much easier time of it than I do these days….The older he gets (and the older I get), the more apprehensive I am taking him to his appointments….I always get my sweet mom to ride along…..I just don’t seem to be able to handle it as well alone anymore….It’s because of the seizures….Crazy, right? The absolute best place to be when he has seizures would be with a physician…..But I am still keyed up during the entire appointment until we get back in our van and get safely back home…..

Back to our day….Dr. Neuro studied the monthly seizure calendars I always provide him, and I think he was disappointed in the level of activity over the past few months since starting on the Banzel….We were both very hopeful that we would see better results….And Colby seems to continue to have an increase in the seizures when he is sick….Usually the numbers drop dramatically once he is on an antibiotic and it has had time to kick in and take effect…..

I was previously under the impression that we would be continuing to go up a little more on the dosage, but he decided to keep it at the current 1300 mg twice daily because of his size ….I am praying that the Banzel may eventually help a bit more….I actually do think it has decreased the number and the severity of the seizures somewhat when he is healthy…But I can’t deny my disappointment that, overall, it hasn’t worked any better than it has….It is hard to keep positive when drug after drug fail to yield a good result…..I have reached the point that I don't ever expect a reduction in seizures...But I have NOT reached the point of having no hope....So, in addition to the Banzel, we are also to continue on the Trileptal, Keppra and Clonipin….He also ordered a complete blood workup, along with Trileptal levels….

Dr. Cardio stuck his head in and asked if we were ready to see him, and he and Dr. Neuro discussed what bloodtests were going to be drawn….They work so well together and both have such a genuine compassion for their patients AND their families….Actually, they are both pediatric specialists in a large hospital system.…We should have been kicked out of their practices when Colby turned 18! But they both have agreed to continue to see Colby unless he reaches a point where his conditions warrant an adult specialist for whatever reason.…Again…SO fortunate!!...Because I detest taking Colby to a new doctor…..WAY too much stress.....and information to try and convey….And you are always wondering if they will “get” his situation….Being virtually “undiagnosed” with any particular type of syndrome, there is nothing for them to “refer” to in their minds or textbooks….No one has ever heard of the "Colby Syndrome....)....At least if there was a “label”…..Oh well, there is none…..

So next Colby had his usual EKG and Echocardiagram….The technician actually does it while he is in his wheelchair (two less times to lift him!)….Then Dr. Cardio came in and gave him a real good once-over….After looking at the test results, he is recommending increasing his blood pressure Rx by 10 mg. in the AM…..NOT what I wanted to hear…..He said he was not really seeing anything serious or a major decline, but he just wanted to try and keep the blood flowing through his heart as easily as possible….Actually, over the last 15 years or so, we have gradually increased the Lisinopril by 10 mg. intervals….So at this dose, he will be on 20 mg. AM and PM….

This is a prophylactic measure to hopefully prevent a valve replacement in the future….We will try this higher dose and go for the periodic blood pressure checks to make sure he is tolerating the change….It will once again be an uneasy adjustment period….As are all medication changes with our kids…..I guess it is a minor change, as things go….I know we could have received news that was a whole lot more daunting….And I am so grateful that Colby’s heart conditions have remained fairly stable and are no worse than they are….And asymptomatic, as far as the impact on his daily life….

But I can’t help but want more….More for my boy….

I mean....For goodness sake's...He has enough to deal with....Day by day....Minute by minute....With these seizures saturating his brain and taking him away from us during those horrible moments.....

I Need A Plan

2009-09-14T21:59:00.012-04:00

I need a plan...I have a 24-year-old son who is totally dependent on me….for everything….It’s always been this way, so why do I get slapped in the face from time to time with “reminders”?

I got sick recently….I mean, not like my usual migraines and little stuff….I mean "sick" sick…..Three different meds and I’m still not quite well….For three days, I felt horrible, even having to call my mom over to help care for Colby….I couldn’t even feed the little man!...Now, only three days, you might ask? What’s the big deal? Well, yeah, and I am SO thankful it was ONLY three days…

But in my world, three days can seem like an eternity when I can’t care for my child….

I am one of those people that HATES to ask for help….Not that I am “too proud” and don’t want anyone to know that I actually need help.…I just don’t want to put anyone else out….Even my dear, precious mom, who fusses with me regularly about that very issue! She says I won’t let her help me enough….But it is just something that is difficult for me….I don’t want to put my responsibilities on anyone else….I’m a grown woman, for goodness sakes!…And Colby is MY responsibility…

So, on the morning I woke up sick, I called my sister (who lives over two hours away) and just went to pieces and sobbed to her….I cried like a little baby....So silly when I think back…First time I’ve done that in awhile….I was so sick and just worn down emotionally….I just broke…..
“What am I going to do?”

“How am I going to manage?”

“What if Colby’s seizures are really bad today?”

“I hate to put this off on Mom…”

Then it went into….

“What if I get worse?”

“What if I get really sick sometime?”

“What if I were to be put in the hospital”?

“What would I do?”

“I’m getting older.…”

“What if I can’t continue to do this by myself?”

And again, “What am I going to do?”

And on and on and on….Sis listened patiently, as sisters do…. She consoled me and encouraged me and gave me some “positive talk”….She knows me….She gets me….She instinctively knows what I need to hear….

We hung up and I called Mom….She came immediately and helped me care for Colby over the next few days….She is amazing with her grandson, and he adores his “Nannie”….They played and ate and watched videos and napped while I tried to rest….

Crisis averted….

I can be such a baby! I mean, I wasn’t deathly ill….No biggie….Except when you have a young life totally depending on you….Minute by minute….Just to keep him going…..It’s even different than a young mother with a newborn….Those babies are usually healthy, thank goodness….They usually have no catastrophic illnesses or disabilities….

I think part of the reason I overreacted was that I haven’t been really SICK sick in years and years….Not to the point that I couldn’t take care of Colby….I actually have severe migraines 1-2 times per week….But no problem! I take my meds, curl up beside Colby in front of his favorite videos with a pillow, the ice pack, cold drink…And I wait for it to eventually pass…I can do that just fine….But this time, I got scared….Because it started me thinking again about the “what ifs”…..And it snowballed from there….

Generally speaking, I think I deal with the stress of caring for my son 24/7 fairly well…I am a “homebody” at heart, so I don’t need to be going and doing all the time….Never have been that way…..So being somewhat confined is not the issue...Like anyone, though, I do have my “down” moments when the situation gets to me….My “pity parties” I throw for myself from time-to-time….But this getting sick business really got my attention....

Colby’s father is “absent”….(A lot of you have asked about that situation….Maybe one day I will post about it…)…Colby's brother has an extremely time-consuming job….and a life he deserves to live….He is a tremendous help to me, but he can’t always be available….Sis lives away and has three young children….Daddy is gone….

I have some dear friends who would help me out in a pinch, but they are NOT comfortable with Colby’s seizures…Only one friend is OK with it….She is my dear friend who kept Colby during my Daddy’s funeral….But her son has major disabilities, including seizures, as well, so she is not readily available…Colby’s needs are SO unique, that it would be even MORE stressful to me to have to call someone in who did not know him EXTREMELY well and have long-term experience with him….There is no manual….

The thing is, his seizures range from quick, tiny head nods to grand mals…So, many of his seizures would go totally unnoticed by most people…In fact, there have been two instances with physicians some years ago (neither of which I have ever mentioned in this blog) where they did not recognize that Colby was seizing while they were examining him and staring right at his face!!! Very comforting!!!

So it’s me and my mom….She is the only one I can count on to physically be here for Colby if I can’t…..But she and I are both getting older…..(Sorry Mom!!)

These past few weeks have been another of those “slaps” of reality that we get from time to time….Our little wake-up calls….I must force myself to figure out what I am going to do in the future….I am going to get sick again at some point.…It’s just a matter of when…I am going to hurt my back (again)….And my tiny little mother can’t lift Colby now!!

I just need to think this thing through, quit procrastinating and GET A PLAN!!!….

Seizures = High Risk

2009-09-03T23:10:00.007-04:00

The Director of the CDC reported on the H1N1 risk to children on the CBS News tonight....

"We had H1N1 influenza throughout the summer in summer camps, and now with colleges and universities coming back into session, we're seeing more cases," said CDC Director Thomas Frieden. Unlike the seasonal flu, the H1N1 virus is affecting school-age kids more than toddlers. More than 80 percent of the kids who died were between 5 and 17 years old. Of the 36 who died, two-thirds of them had high-risk medical conditions including cerebral palsy, epilepsy and seizure disorders. Some of the children with no pre-existing conditions were killed by a combination of the H1N1 flu and a bacterial infection. "Kids with an underlying conditions need to be treated promptly if they develop fever, and first online or at the front of the line, for vaccination when it becomes available," Frieden said.

Just something else for us to worry about.....Wish our kids could catch a break....

Check-Up

2009-08-14T11:28:00.012-04:00

I took Colby for a "mini physical" with our General Practitioner this week….I really dreaded it….As many hours and hours, over years and years, that we have spent in medical facilities….It has always been stressful…But the older he gets, it seems the more difficult it is….Partly because of his being non-ambulatory…But mostly because of the seizures…..

Colby can be having a perfectly good day…No trace of any seizure activity at all…Laughing and playful….No problems….And then it can strike us both like a bolt of lightening….“The Beast” making his appearance out of the blue once again….And stealing yet another part of my son away from me….Anyway….

For several days, he had been having more and more seizures again, and falling with some of them. I was actually suspecting another infection of some sort, but I wasn’t seeing many obvious signs, other than the increase in seizures….Of course, with Colby being nonverbal, I have to always play detective….So I wasn’t sure if he was really sick….But I detest taking him anywhere when the seizures are rampant….Even a physician’s office!!! I am simply a bundle of nerves by the time we get to the office….Isn’t that crazy??...The SAFEST place to be, but I would rather my child be at home with me when they hit….

Everyone who works at that office could not be any more accommodating…Ms. Receptionist is just precious…She is always as helpful to me and sweet to Colby as she could possibly be….Always seeing to our comfort….And Ms. Nurse? I have called her many a time in tears and in a panic over Colby…She has never made me feel foolish….She is smart as a whip, and I can trust her totally….These two beautiful ladies, along with Dr. G.P., have seen me through too many crises to count….They know me so well….

Dr. G.P. just happened to be present at the hospital when Colby was born 24 years ago. My former husband was in the military at the time, and I had some pretty major complications with my first delivery (a VERY bad experience). So rather than give birth in yet another military hospital, we were able to “work it” so that Colby was born in a civilian hospital. (Don’t ask!) Dr. G.P. was a young physician in the practice…In fact, I had never even met him…We had previously only seen his other two partners.….

So when Colby was born, he was having some breathing difficulties….He was 3 weeks early, but weighed in at 9 lbs, 6 oz…That hospital had no NICU, so after a quick but thorough examination Dr. G.P. promptly put him in an ambulance (the first of many rides over the years) and sent him across town to another hospital while I had to stay behind….I will never forget him coming in to the recovery room…..He very gently explained that Colby was having a little trouble breathing but needed some extra care…..They needed to send him right away, but that he was not at a critical point…..I had only seen him a brief moment being worked on immediately after he was born....I remember it just like it was yesterday….I think I was in some shock at that point…..But our doctor was so good with me and so calm…..I knew Colby would be taken care of…..And I knew I could trust this man.….And our doctor was right…The breathing issues were resolved in two days with oxygen, and my boy was returned to me at my hospital healthy and strong…...

Little did we know what would lie ahead…..

With this appointment, it turns out Colby has a middle ear infection….No big deal, except that it perpetuates a big increase in his seizure activity.....(He has a long history of these infections…He actually has had 6 myringotomies over the years, but the tubes would always fall out prematurely)….So here we go on another round of 875 mg Augmentin. That is generally our drug of choice for these types of infections, as he seems to respond well to it in most cases.

When we saw Dr. G.P. this week, he was full of questions, as always….He’s very sweet and gentle with Colby during the exam….Then, as usual, he turns to me and sits patiently while I provide my usual longer than necessary dissertation of any recent issues….We go over his meds and recent appointments with his specialists, as well as any other concerns….

And then he invariably focuses on me…(He happens to be my G.P. as well...)…He wants to know how I am handling everything…How I am feeling…How my life is going….How the rest of my family is doing (He actually treats all of us)….

And three times….Three times I counted throughout our appointment that he made a reference to the good care that I am giving my son!!….How Colby is lucky to have me as his mother….Dr. G.P. drills that into my head at each meeting…..It is something that I desperately need from him…..Acknowledgement like this coming from my son’s physician?….It helps restore my confidence in myself, which waxes and wanes through the years….It’s as good as any drug I could ask for!….Knowing us for all these years….Knowing what I have gone through personally….With Colby’s health and development for so many years….Experiencing the recent loss of my own father (he was his physician as well…)….The sad details of my separation and divorce…..Trying to be there for my other son….Worrying about being a single mother….Concerns about finances….Dr. G.P. knows what is on my plate….And he worries about me as much as he does my son…..He is amazing….How fortunate are we?....

So I left our appointment feeling calm and at peace…..Reassured....Colby’s good….Of course, with that, I mean it’s as good as it gets these days….No new problems..…And his existing ones are no worse….That is a relief….That’s all I can realistically ask for…....

Notice that I said “realistically”…..

Cocktail anyone?

2009-07-25T23:09:00.009-04:00

We have only had one seizure-free day this month….

One day…...OK…..So we’ll take that…..Got to give praise for the little gifts, too, right? But I can’t say I’m satisfied….

The good news is that we are seeing a decrease in the number of seizures per day…..And we are seeing a little less intensity….

Do I dare say it? I need to knock on wood….Again….Seems like every time I write about any successes, we take the proverbial “two steps back”……I can't let myself go into any more detail than that.....I am too afraid I will jinx it....Again....

I am torn between actually verbalizing these positive reports and keeping them to myself….But people are asking me how the Banzel is working…..So.....

Colby began taking this new Rx March 18th…..We have done a slow but steady titration upwards to reach our current dosage….1000 mg./AM and 1000 mg./PM as of today….A 100 mg. increase per week…..Our goal is between 1200 mg. and 1300 mg. twice a day….(Of course, this is in addition to his three other AEDs: Trileptal, Keppra and Clonopin…)

I do believe that we have avoided any complications so far (knock on wood again) from this Rx BECAUSE we are increasing it so slowly and deliberately….Dr. Neuro has always insisted on this…..He is so very careful with his recommendations....There are times when I get impatient with either increases or with weans….But Colby’s proven sensitivity to medications dictates our time frame…. The only ill effects I have seen (which probably are too minimal to even mention) are increased sleepiness for a day or two with each increase….And a few sleepless nights (unusual for him) over the last 4 months, which I don’t think should even be attributed to the Banzel....

It makes me uncomfortable....actually pretty anxious....to read other parents’ remarks about their children’s problems (or even simply their lack of success) with Banzel…..Being so newly FDA approved and just on the market in February of this year, it is NOT as tried and truly tested as I would like. But we are quickly running out of options….We’ve “been there and done that” with almost every single drug (or any cocktail combos) available…..

So, even though none of the other blogs I follow report that their children were helped at all by this new Rx (and some had even increased seizure frequency), we are going to keep trying…..What else can we do?

And my son will continue to fight this beast with a smile on his face….

My goal for Colby is seizure relief….

My dream for him is total and complete seizure freedom forever….

But, if I am to be honest, this is probably not a dream at all……It is just a mother’s fantasy…..

"Special Mother"?????

2009-07-15T20:36:00.009-04:00

Yesterday, my mom came across this essay written by Erma Bombeck a number of years ago....She emailed it to me with the note, "Remember this?"

I did remember it...Someone gave it to me years and years ago…When I was “new to the business…” I usually hang on to things like this forever....I have scrapbooks and folders and memory boxes and keepsake drawers and computer files....FULL of this kind of stuff....You know...."Inspirational" stuff...Written words that you come across yourself or that well-intentioned people send you...Words that are supposed to change your dreary, "doom and gloom," negative outlook and give you hope....The “feel good stuff”….Some of it can be pretty sappy.....But there are some writings that have stayed with me over the years….And actually helped me….This was one of those….If you have a child with a disability, you may have….probably have….seen it….I’m sure some kind person sent it to you as well….As I said, it has been around, but I think it is worth another look from time to time….

The Special Mother ....by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...

"Armstrong, Beth, son. Patron Saint - Matthew…."

"Forrest, Marjorie, daughter. Patron Saint - Cecilia...."

"Rutledge, Carrie, twins. Patron Saint? - Give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother.
You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods…. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle, and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see...ignorance, cruelty,prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint? Who do You choose?" asks the angel, his pen poised in mid-air….

God smiles, "A mirror will suffice..."

I like Erma….She’s not accentuating our "sainthood"….She is allowing us to be "normal"...to have lots of flaws….But flaws that could work to our advantage with our children….

I never wanted to be known as a “special mom”….Not in this sense anyway….I just wanted to be a good one….Over all these years, dozens and dozens of people have told me that I am "special"...That "God only gives special children to special parents..." You know...When you have a child with a disability, you hear it all the time....People wanting so badly to say something sweet and positive to make us feel better about the situation, our child...and ourselves....As though they feel we belong on a pedestal or something because we gave birth to a sick child!!!....Who wants to be on THAT kind of pedestal??? But these friends and loved ones are trying so desperately to help….And they are SO thoughtful to try……It is so hard to know what to say….

I just DESPERATELY want to be ORDINARY....I would LOVE to just have the ordinary challenges of being Colby's mom....Just fade into the background with all the other “normal” families....Me and my two sons….Be one of the crowd….Not stick out in it.....Because that would mean my son, my "mothering," our lives.....would be just that....NORMAL…..

Ordinary....average....run-of-the-mill….mundane....the usual....
the same....unremarkable....

But…..

“Accept the things that you cannot change and wisdom to know the difference..." Right? “It’s not ‘what if?’…..

It’s ‘what is’….." ....Right?

All those platitudes that we repeat over and over to ourselves in hopes that the words truly become part of us....

"...wisdom to know the difference..." I think I know the difference....

I have accepted that I belong to that fraternity of “Special Parents”….Whether I like it or not….Because Colby won't walk or talk or communicate more than some sounds and gestures....I mean, he is 24 years old now, for goodness sakes!!!....

But the seizure thing? Too difficult to accept....I think I have accepted the reality that he has the seizure disorder itself....But that he will never improve?.....Nope...Can’t do it….Can't "accept" that one...I have too much hope, though tempered, to give that one single wish up….Hence, the continuing quest for new meds....new information.....

Normal….Walking and talking and processing thoughts and functioning seizure-free....

That's not my son....That's not Colby....And that's not me....So I guess we will both continue to be "special"....

We’ll just have to accept the label….But we don’t really have to like it…

The Good Ole Days

2009-07-03T16:20:00.025-04:00

When I write about Colby, I usually find myself writing about the challenges that come with his seizure disorder....That is the most pressing issue I have with him....It's actually interesting when I look back over my previous posts and realize that I rarely even mention what I consider the lesser of his problems....

"Lesser"....What a lightweight word to describe Colby's other disabilities....But it is so true now that I am looking back....

As those of you who have been reading these entries know, Colby did not have his first seizure until he was eight years old....He had three in a row, and they came out of nowhere....They were what doctors previously called "grand mals" (and I still refer to them as that....sounds BIG and BAD...like they really are)...EMS was called that night, and he spent a week in the hospital having tests run....The ER Doc even quarantined him at the beginning, thinking it was meningitis because of a rash....It was clear to me from the start, though, and later confirmed by the neuro that the "rash" was NOT a rash...He had actually broken blood vessels all over his body from the strain of that first very strong seizure. In fact, he hurt his back so badly during the episode that he couldn't even sit up for over a week...His orthopedist explained that bones are frequently snapped in half during seizures....My poor little boy....

So the neurologist prescribed Tegretol, which completely controlled the seizures...I became complacent about them....I popped his pills and regularly had his blood checked....But I never dreamed things would get worse....And all was well....For awhile...

He never had another until he was 16 years old....8 long, wonderful seizure-free years....He actually has only had a few more of those type since that time. We are SO, SO blessed in that respect....But it was at that time, at age 16, that these "little" seizures began....And they have never stopped.....THEY are what rule our lives at this point....Yes, these "little" blips that go on and on....These "little" storms in his brain....

Looking back, before these "little" seizures began, our life was what I now think of as "normal"....But that is really the farthest thing from the truth....I mean, I had a child who, first off, had some heart abnormalities....But nothing that impacted his life...It was just there and required medication....

But then there was the fact that he couldn't walk....

And he couldn't talk....

And he tested in the severe range of mental disability....

Etc., Etc.....So..............

You know what is funny? Looking back, we had it made back then! What?....Huh?

Yeah, he couldn't walk, talk....And it was wonderful!!! We could go places and do things and take trips.....and be "normal".....Doesn't that sound nuts? It's because THERE WERE NO SEIZURES!!!

We had wheelchairs and braces and standers and standing boxes and walkers and communication devices and bath seats and special toys and individualized education plans and physical therapy and occupational therapy and speech therapy and music therapy and computer therapy and special schools and special vans and special ramps and special parking places and special EVERYTHING.....

BUT THERE WERE NO SEIZURES!!!

And it was WONDERFUL!!!!!!!!!!!!

But I didn't realize it....I didn't know how good we had it....

Boy do I ever know it now.....I'd give ANYTHING to go back to that world....But that is a fantasy...And I know it....And I can't dwell on it....

Because it's not "What if?"....It's "What is...."

And this is the way it is NOW....

I'm always trying to figure out what God is wanting me to learn as I go through these challenges with my son....Sometimes I can come up with something...Sometimes not....Dealing with this seizure disorder has shown me that, like my sweet Daddy always said so simply throughout his illness, "Things could be worse..." I just didn't know how good we had it with my son when he ONLY couldn't walk, talk, etc., etc., etc....Does that even make sense?

OK...So what can I learn today? Years later? I can try my best to appreciate that it is ONLY seizures that Colby suffers from....That it could be worse....And I know it could be....As hard as it is, I just have to keep reminding myself of that.....daily....And as I pray daily for the seizures to stop, I have to also remember to thank God daily for the health that he does have...And to be grateful for that......

For Father's Day 2009

2009-06-24T22:31:00.005-04:00

I created this montage for my family to honor my daddy....I think he would be pleased....We love and miss him so much...Thank you for taking the time to watch....(w/sound)

http://www.onetruemedia.com/shared?p=8ec95887fa01732a096015&skin_id=601&utm_source=otm&utm_medium=text_url

Colby and My Daddy

2009-06-20T23:52:00.018-04:00

It's Father’s Day…

“Come closer, Colby….Papa wants to tell you a secret…”

That was a little game they always played….Then Daddy would whisper something in his ear, and Colby would just hug himself in glee and just giggle and giggle….I would ask Daddy time and again what he said to my boy that was so funny, but he would always tell me the same thing…. “It’s a secret!” I never found out what the “secret” was, but it was always a thrill for them both…

This is not a good day for me….It is my second Father’s Day without Daddy….Last year, I just pretended it wasn’t “that day”….I thought it might be easier this year….But it isn’t….I think it is worse…I actually detest this day now….

As you can see from my blog introduction, I dedicated this site to my daddy when I began writing….And you may have noticed that I haven’t spoken of him much here at all….It is just still too hard….I already know before I get started today that my words just can’t do his life justice….But I am going to try and write a bit..….

My daddy was a very gentle, humble man….But at the same time, he was very strong and courageous….and extremely protective of mom, me and my baby sister….He didn’t talk just to be talking….And he was very intelligent….He knew how to do and fix anything and could answer any question on any subject that his daughters asked, no matter what the topic….He was very well respected and admired by everyone who had the pleasure of knowing him….

Before college, he was a gunner in the Air Force and served in Korea during the Korean War….While back home on leave, he spotted my mom crossing the street downtown, pointed her out to his best friend and told him that he was “going to marry that girl!” His friend happened to know who she was (she was well-known, being a beauty queen and having recently competed in the Miss North Carolina Pageant), so he set them up on a blind date….While stationed in Texas, he would actually hitchhike to North Carolina just to spend 24 hours with her! Can you imagine? He adored her from the moment he met her until she lost him 53 years later…..

And he adored his two daughters as well….What a wonderful life he and my mom gave us! A loving, peaceful, Christian home where we always felt safe….We were taught love and kindness, tolerance and respect for others….And we were in church every Sunday….Daddy was always there for us and would support and protect us in every way….He put his family first above everything else…We were the most important things in his life….

When I married and had my first son, Mom and Daddy were just thrilled! Daddy was a real sports nut, and he FINALLY had his “son”!!! His relationship with my oldest was so very special….They were just like father and son…..Then Colby came along….And, as you can imagine, his birth really impacted our entire family….Colby was named after my Daddy, and there was a unique bond between them from the beginning as well….Both of my parents were extremely involved in Colby’s medical issues, therapies, schooling….And because my marriage ended as it did..….Well, let me just say that my boys were so very fortunate to have my father…..He truly became “their daddy” as well as their “Papa.”

Daddy loved to take Colby to school for me….He would end up spending a long time visiting with the other children and joking with them and making them laugh….They all knew him as “Papa”…..Those that could would sign “Colby’s Grandpa” when he wheeled Colby in the door…He really loved those kids….In fact, when two of Colby’s best friends passed away within one month of each other, Daddy was just as devastated as the rest of us….

When my sister married and had three more grandchildren for my parents, there was just more love to go around in our family….Each child had a part of Papa’s heart, and each had their own loving connection with him….When the family would all gather together? There was nothing like it….Love, laughter, teasing, support….

Some years later, Daddy began experiencing a strange symptom….He described it as his foot “sticking to the floor”…..He had a multitude of tests and saw many specialists throughout several states….It slowly but surely progressed….He was finally diagnosed at the ALS Clinic at Carolina Medical Center in Charlotte….He had Primary Lateral Sclerosis, a “cousin” to ALS….

Over the next eight years, Daddy’s physical abilities began to deteriorate….First he began to use a cane, then a walker….He got to the point where he couldn’t take steps, so he began using a Jazzy chair. As the disease progressed, he had to go into a specially modified electric wheelchair….He called it his “Cadillac,” it was so high-tech and fancy. The disease at that point was only affecting his legs, but soon it began to move into one arm, then the other….Eventually, he could only move his head and his fingers on one hand….His illness had no effect whatsoever on his mind….He was brilliant and sharp until the day we lost him…

Daddy’s bond with Colby took on a new meaning as he faced these challenges….When he became wheelchair-bound, I would park Colby right beside him so he could be close to him….Colby would lean his head over on Daddy’s shoulder and just leave it there for the longest time….And he would pat Daddy on the chest or on his leg….It was like he knew that Papa needed taking care of now, too….Like he really understood….And remember how Colby loves to clap? He would clap and clap, and Daddy couldn’t move his hands to participate…So Colby would reach over and pick up his hand….And Daddy’s hand would just drop….He would say, “I’m so sorry Colby. I can’t clap with you anymore…” It broke my heart….It still breaks over that image in my mind….He called Colby his “hero”…..

Through all of this, Daddy maintained his positive attitude….He had seen my baby boy struggle for years and years, and I think it really influenced his own attitude. We never once heard Daddy ask “Why me?”….When I talked with him about his situation, he would ALWAYS say the same thing…. “There are a lot of people that are a WHOLE LOT worse off that me”…. He always maintained that sweetness….That gentle spirit….He drew his strength from God and from his family….And from his little special needs grandson…..

This has definitely been the most difficult post I have ever written…. I apologize if these words have been too somber….And I know my thoughts have been hard to collect and seem scattered….Tears have been streaming down my face as I have tried to tell you about my father….And I feel like I have failed miserably, as my words do not even come close….I know I must sound like a naïve little girl who is just besotted by her father…..That he was perfect and could do no wrong…..Well, he was perfect to us…

I have tried to give you another little glimpse into Colby’s little world through my Daddy’s life and the effect my son had on him.… My father was his favorite….Colby used to call all of the family by name…. “Mama” (me, of course), “GaGa” (his name for his father), “Bubba” (his brother), “Ba” (my sister), “GaMa” (my ex’s mom), “Nana” (Nannie – my mother), and of course “Papa” (my daddy)…..Over the years, he has gradually stopped saying everyone’s name….Except my daddy’s…. “Papa” was and is the only person he regularly still calls by name….What a testimony to him! I think that says it all….What an influence these beautiful children have on the world!!!!

When we were going through some of Daddy’s things shortly after he passed away, I found a small piece of paper folded up in a notebook with this Bible verse written on it:

I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the Righteous Judge, will award me on that day…. II Timothy 4: 7 and 8

Thank you for letting me speak about him here….He did “fight the good fight”….And he did it with determination and grace and dignity….We love and miss him more that you can imagine….Our precious, remarkable Daddy….

All Choked Up....

2009-06-08T15:20:00.006-04:00

We're enjoying our meal together, and Colby takes a bite of one of his favorite foods....Chocolate cake, cheeseburger, pizza, mac and cheese...All the foods youngsters enjoy....Today it was a cheese shiccacia....My dear friend (who also has a special needs child) brought one by for his lunch....He absolutely loves them....He has NO eating or swallowing difficulties, so there are no feeding restrictions at all....I just try and safely monitor his bite sizes....

Eating is one of the most NORMAL things about my son....Even though I am the one feeding him at 24 years old....He LOVES to eat...His appetite is fantastic...I love to WATCH him eat....Colby relishes every single bite....It is undoubtedly his favorite thing to do...

So he takes a bite....And then "IT" happens....

Yep....The Beast strikes again....Unexpectedly....A seizure comes on with a mouth full of food ready to be swallowed....And you get frantic (again) and you try and see if you can get the food out....And if you can't, you try and get him to relax as he seizes (Ha!).....And YOU try and relax (QUADRUPLE Ha!)....It finally ends after a number of seconds (which seems like hours)...Then you wait for the uncontrollable coughing which usually follows....And you PRAY, PRAY, PRAY, that he doesn't aspirate as he coughs and catches his breath....Another of the dangers my boy faces....But he gets over it, flashes me that huge grin of his and opens his mouth for another bite....

We have known several of Colby's school buddies who have aspirated and not survived.....And I am personally convinced that aspiration played a part in losing my daddy....So you can see why this makes me very skiddish....VERY skiddish....But it is just one of the little "perks" that comes along with seizures....Oh well....Fun, fun, fun....

Halfway there?

2009-06-03T22:34:00.011-04:00

Over the last few months, we have been trying Colby's new medication, Banzel....It is brand new on the market as of January 2009, so it was not the easiest decision to make....Petrified is a more suitable description...No history to go on with this Rx....Very little info out there....So I continue to read online about this drug's successes and failures through other blogs, and from what I have seen so far, the failures are winning over the successes by a pretty good margin....Uh oh....It IS still early, though.....

Since 2001, we have tried every seizure medication that is appropriate for this type of drop seizures....His grand mals seem to be controlled very well by Trileptal....But not the drops....Clonipin seems to be the only drug that helps somewhat with those....(The Keppra and Zonegran doses he is also currently on are so small that we don't think they are having any effect at all...)...And his drops have gone from just a "head bow" to a complete "body collapse" over this last year...Since Banzel targets drop seizures specifically, it seemed to be a good possibility....I mean, you have to keep trying....

We began the trial in mid-March, starting out on 200 mg. @ night...We have increased the dosage by 100 mg. every week since....Usually Banzel is increased somewhat faster than our prescribed schedule...But we must go slower since Colby has a tendency to get toxic so quickly...We are now up to 600 mg. twice a day....We are halfway to the target dose set by Dr. Neuro....2400 mg. per day....

So far, Colby seems to be tolerating it fairly well as far as side effects, which are the usual ones for seizure meds....Since he can't speak and tell me if he is feeling any effects, I have to play detective, minute by minute...Like you do with a baby....Search, search, search for something "not quite right"....

By mid-April, he began to have some sleepier days, taking sometimes 2 short naps a day and still sleeping well at night....Over the past week or so, though, he has still required naps during the day, but he has also begun to awaken at 4 - 5 AM (and stay awake), which is extremely unusual for him...And during the day, he has seemed a little more "keyed up" than normal....

Colby is generally a pretty laid back kid who can get really happy and excited when he is interacting with people, watching his favorite videos, and playing with his favorite noisemaker toys (or whatever else he sees lying around that happens to strike his fancy!)...So when I say "keyed up" now, I mean he is staying "busy" constantly, almost nervously.... Fiddling with his toys....Getting into everything.....Or wanting to crawl back and forth around the room and wanting to "escape" his pillow barriers by picking them up and throwing them at me and just laughing up a storm....That behavior is cute, and I don't mind him being active and playing...I am just worried about him falling again and another ER trip...So I have not been very "still" over the last few days for jumping up and following him all over to protect him! (Getting that much-needed exercise, I guess!) This increased activity also scares me in another way....When he became toxic on just a low dose of Lamictal, he grew increasingly agitated and active and couldn't sleep...He was also sick at his stomach, though, which has not happened yet....So I am continuing to pray and keeping my fingers crossed....

My HEART is getting "exercised" too...And NOT in a good way....I am on higher alert than usual with all of this increased activity...My heart flipping over every time he takes off and "escapes"...Remember, he is over 100 pounds and 5 feet tall...So he is a handful! Whew!!! Yesterday, I spoke with Dr. Neuro's nurse, and she said to give it several days and see how it goes...Hopefully, this behavior will even out and he will calm down some as his body adjusts....

So...The big question...Is the Banzel working? It is hard to say....MAYBE...???? I THINK so....??? I really don't want to actually say yet...You know what happens when you do....But we are having a few days here and there with no seizures....But also some with 6 or 8....Anyway, Colby is still only on half of the total dose that he will eventually get to (if all goes well)...So, I guess the only thing I can say with some confidence is...."So far, so good"....And I will continue on as long as he tolerates it....

Poor thing....He just smiles and opens his mouth...Over and over...Day after day...While I shove in pill after pill after pill....Experimenting....He just looks at me with those adoring eyes (I can actually do NO wrong in Colby's eyes!)....And he has complete trust in me....Now THAT is a responsibility....Why was I given this responsibility? I am so NOT qualified...

Big Brother and Colby

2009-05-23T13:33:00.028-04:00

Big Brother and Colby's Mom

Colby's "Big Brother" is with friends at Hilton Head for a long weekend...The busy "end of the school year" time is over....And he is taking a few days to enjoy himself….And he deserves it…He has a wonderful job that he loves, working at a fine, southern private school....He has administrative duties, as well as coaching basketball and cross country, which is his true passion....

Speaking of Big Brother, he must be "OK" with me writing...I haven't shared this with a whole lot of folks...But I saw where he had this blog listed on his Facebook page...I was really surprised! And he also told me he emailed the site to his coworkers...I was very flattered….You know how parents can embarrass their children…...He is, without a doubt, the most wonderful son I could have ever hoped for…..He has actually made my having a child with disabilities SO much easier.....

Brother, 16 months

Brother was born after my husband and I had been married for about a year...We were stationed on the Gulf Coast during the pregnancy and for his first two and a half years...It was a military hospital birth (Enough said! Horror story!!!), and he was just this perfect, beautiful baby boy...His father worked long hours on base and was also going to college, so the baby and I spent most of our time together and were big buddies...He was so bright and so funny...Just a little comedian.....And he loved to be on the go...His first real sentence was "Car key go bye-bye?"

Brother, Age 3 and Colby, 6 Weeks

He was three years old when Colby was born...He was so excited to have a little brother!! He did NOT want a sister!! He was the perfect big brother...He was patient and kind and very nurturing...And I can't remember a jealousy issue at all...EVER...Even considering the exorbitant amount of time and attention that Colby required! They were just great buddies...Colby adored Brother...When he finally began to crawl well (and fast) during his third year, Brother had NO privacy! And occasionally, there were times of "Mom, get Colby out of my stuff!" I actually RELISHED in those moments....They were "normal" moments...

Brother, Age 4 and Colby, I Year Old

I believe when your sibling is born with disabilities, it changes who you become...Especially if you have no "normal" brothers or sisters...Brother didn't know anything any different...Colby was just Colby...And our lives included lots of specialists and therapies and surgeries and braces and standers and wheelchairs...Seeing your brother’s new school with his new friends that were NOT normal…. Etc., Etc., Etc...That was our normal....That was HIS childhood...Brother spent lots of days tagging along to these appointments...He and I were alone with Colby when he had his first grand mal...11:00 PM one night...HE was the one that called 911...HE spent the evening in the ER with us...at 11 years young....And from then on, he has been there for all of the emergencies...More seizures, Rx poisonings, horrible nosebleeds, falls from seizures..All resulting in calling 911...He has been my Helper...Assistant...Co-Parent...Companion....My Sanity……

Brother, Age 8 and Colby, Age 5

Naturally, there has been guilt on my part because of that...LOTS of guilt...Unless we were in "Crisis Mode", I desperately tried my best to give Big Brother a normal childhood...I made certain he was at Sunday School and Church, at all the playdates, played on all sports teams that he enjoyed, participated in Scouts, parties, karate, etc., etc....Whatever his interests were outside the home, I wanted to make sure that he had every opportunity to take advantage of those things...And if it wasn't for my wonderful Mom, Daddy, Sister and a great girlfriend to jump in here and there and do the carpool thing in a pinch when Colby was sick, some of his activities would have gone by the wayside...But even asking for rides for him from time to time was hard for me...I wanted to be right there in my role as "Mom"...All the time...

Brother, Age 8 and Colby, Age 5

Brother, Age 10 and Colby, Age 7

Throughout the years, Brother and I talked about Colby's problems...It was always in a "matter-of-fact" way...It was something he didn't dwell on...So taking my cue from him, neither did I...With him anyway...He asked questions from time to time...And I would try and explain, gearing it to his age at that particular time...But, he was always more mature than his years...And there were not a whole lot of questions...Kids with special needs siblings just "know"....

Brother, Age 12 and Colby, Age 9

And Brother's close friends were so accepting of Colby...I remember there being some curiosity and staring when they would first meet him...But I would hear Brother give his little explanation...It was almost like he was talking about his favorite video game or latest baseball card acquisition...Just "this is the way it is..." No big deal..."matter of fact"...And the friends quickly began feeling the same way...No big deal....His little brother was just that: his little brother...I did make it a practice to take Colby to Brother's school every year and let his teachers and fellow students get to know him...I actually had two goals in mind with that: to make Brother's life a little easier with friends & school AND to raise general awareness...I think it helped...Everyone knew about Colby....

Brother, Age 12 and Colby, Age 9

I only recall one incident throughout the years (that was mentioned to me, anyway!) where another child gave Brother a hard time about Colby....He was in the 3rd or 4th grade at the time...The class was out on the playground, and he and a little boy were both going after a ball...The boy got angry and said, "You're deaf like your brother!" I asked him how he responded, and he said he answered, "He's not deaf!" Well, I was a little amused but tried to hide it...Fact is, Colby has a very mild hearing loss (scar tissue buildup from six sets of P.E. tubes!) which is virtually unnoticeable...I guess that child figured all handicapped children were deaf...???...Anyway, I asked Brother how he felt about that, and he said, "It didn't bother me. That kid doesn't know what he is talking about." And that was that. Brother really never thought of Colby as “not normal”….Colby was just Colby...

Brother, Age 13 and Colby, Age 10

I wasn't ever a "normal" mother...After Colby came along, that is....In fact, I can't even remember what that was like, it was so long ago now...I was, and am, actually two mothers...I referred to myself as "Normal Mom" and "Abnormal Mom"...I know, that was not the best choice of nicknames....But that's how it felt! I had to be two totally different types of moms to these two totally different types of boys...For instance, after Colby's first grand mal seizure, we spent a week in the hospital....Just to be released on Brother's 12th birthday...We went ahead with the planned "Spend The Night Birthday Party"...10 boys that decided to stay up until 4:00 AM!!! Or...In one day, going from an IEP (Individualized Education Plan) meeting, deciding on goals at school regarding PT, OT, speech & communication goals, and self-help skills for your 13 year old...to a high school graduation celebration where you other child was voted "Most Dependable"....You have to be two entirely different parents....

Brother, Age 16 and Colby, Age 13

Colby’s Big Brother has turned out to be someone that is a very compassionate person with a good heart…Very smart and very funny….Very creative and very focused...And very dedicated to his little brother's well-being...I think that Colby has taught my son the same things, in the same ways, that he has taught me...He has taught him strength and patience and acceptance...And most of all, I think Brother has learned that life is not always fair...Life can be tough...But you can get through it...And it's not "What if?"...It's "What is..."

We had to create our own new "normal" after Colby was born….And I think we have….God has truly blessed me....It is an honor to know my oldest and call him my son….....

Brother, Age 17 and Colby, age 14

Oh well....

2009-05-15T20:43:00.005-04:00

Farmer Colby

Our Angel

School Play (with his buddies)

In My Sweet Aunt's Wedding

Oh well...We went four days with no seizures...I was feeling hopeful...Again...We had increased the Banzel per Dr. Neuro's instructions, now taking 500 mg twice a day....That is actually still only a small dose for an adult, yet I was gaining some confidence....I should have known better....

I actually made an appointment to get a haircut!!...Something I had not done in five months! Since before Christmas! (Yeah, you can imagine!) I just don't like to leave Colby during the day unless it is absolutely necessary....It simply goes against my nature to just leave my child when he is having a bad day...Some people don't get that....That's just me....But things were going well, and so I got brave....

I left at 8:45 AM, and I called to check on him right after my appointment...Mom said he was doing great....She told me I should just take my time and run any other errands I had...So I decided to stop by Walmart....I usually do the Walmart and grocery thing after I get him in bed at night so I don't have to rush....But not today...I felt confident...So I did my thing and ended up coming home around 11:30 AM....

When I walked in the door, he just didn't look right...I thought he might be mad at me....Sometimes he will give me a "dirty look" when I come home after having left him....I think he tries to make me feel guilty...Mom always says he laughs and plays while I am gone....And when I call home to check in, he is always hootin' and hollerin' and laughing...So I know it is just an act! But not this time...

After lunch and meds, he had a seizure...Then another...And another....I got that sick nauseating feeling....I really just wanted to cry....He ended up having thirteen before he went to bed at 8:00 PM....I know, I know...He's had countless more than that in one day...And I am grateful that it was only thirteen....But I was just so disappointed!! I should have known better....I really should have....I have been doing this WAY too long to get a false sense of security after only a few days....What was I thinking? I guess it was because of the new Rx....I think maybe I have placed too much hope in it....And when he went four days with none...Well, I just let my guard down....

So I called Dr. Neuro...He reassured me in that calm, caring voice...We talked for awhile and came to the conclusion that he was probably coming down with an infection since he was showing some sinus problems...(Colby has an undeniable history which correlates his seizures with illness....Since he can't talk and tell me what is wrong, the drop seizures are a red flag to me that he is probably getting sick...And most of the time, he has had an infection of some sort....Either ear or sinus...After the first few doses of an antibiotic, the seizures will generally decrease greatly and usually stop...) I was to call his Dr. G.P. and let him handle the illness and continue to increase the Banzel as directed....

Our General Practitioner is absolutely wonderful to my family....He was actually there when Colby was born and ordered him to be sent to another hospital with a NICU...So he has been with me on this journey for 24 years as well....I think we have a great trust between us...He relies on me where my son is concerned....I am Colby's voice...I am the detective...And boy, do I rely on him....I don't know what I would do without him...So anyway, last night, I started Colby on 850 mg. twice a day of Augmentin, which is one of our usual antibiotics...

When we go through times like these, I always remember our previous neurologist calling antibiotics Colby's "seizure drugs" ...And more often than not, when he is having multiple clusters that go on and on, that is exactly what is happening...And that is what "cures" him...Temporarily, anyway...

I feel a little better about things...He only had two seizures today....I'm more hopeful again...But I must keep my guard up...I have to use my little internal protective devices...So sometimes I don't sound very hopeful...I'll say things like, "Well, I can't plan to go to the dentist after all tomorrow because he is probably going to be seizuring"...So my mom, the eternal optimist, will gently say things like, "Don't be so pessimistic"..."Oh, don't talk like that"...."Oh, he won't have any tomorrow..." Overall, I would describe myself as being a pretty upbeat, optimistic person....But it is tempered with skepticism when it comes to little Colby...It's my armour that helps shield me when the inevitable returns....I just have to remember to have healthy skepticism...It's a delicate balance...And it is not easy to attain...And sometimes even more difficult to maintain....

After all these years, you just have to adjust and readjust and adjust again...And you always do....(...breathe....)....

Online Seizure Info

2009-05-13T14:26:00.002-04:00

A close friend of mine emailed the following info to me...Thought I would pass it along....

http://www.epliveonline.com/ep_20090519.html

Appointments today...

2009-05-12T11:57:00.005-04:00

We saw Dr. Cardio and Dr. Neuro this morning....Good reports from both of them!!...

Our cardiologist has been seeing Colby for years now...He is absolutely wonderful...He travels all over the world doing mission work, taking care of sick children...Colby had another echocardiagram done, and there were no changes since a few months ago...Praise the Lord! We will remain on his current dosages of Lisinopril and will return in four months...This medication has helped ease the stress on his heart...We are praying that there will be no need for a valve replacement in the future...Dr. Cardio is doing everything in his power to maintain Colby's heart health AND my sanity!!!...Which is no small feat!!!

Dr. Neuro saw Colby next...He is from South America, and I adore his beautiful accent! He is so smart about these kids and meds...He was able to watch the recent video of Colby falling with a seizure...He had previously only seen him "bow" his head...He was a bit surprised that it lasted as long as it did, so I am glad I finally was able to capture it for him to actually see...He checked Colby out real good, and we talked at length about our medication plans...We will continue to wean him off of the Zonegran (Yay!) and continue to increase the Banzel...He gave me specific directions on the dosages and speed with which we will do this, so I won't have to call them every week...We will also continue the Trileptal, Keppra and Clonipin...He is so funny...He calls Colby his "little man"...And he has told me that I am "such a little soldier"!!! Too cute!!! I told him I FEEL like "a soldier"!!! Colby will return to see him in four months unless we need him before...

I talked with the docs about blogging...They were both very interested...In talking to Dr. Neuro, I ASSURED him that I was trying to be very discriminating with what I am reading...He and Dr. Cardio both believe blogs can be very helpful....I was so glad to hear their opinions...They thought it was funny that I had been dubbed a "veteran seizure mom!"

These men are mine and Colby's lifelines....I ADORE them both...They are actually both pediatric specialists...But they have agreed to keep seeing Colby, even though he is adult age now, as long as they feel comfortable that they can treat him sufficiently....Praise the Lord on that one too!!!

I don't know what I would do without these men and their precious nurses that take care of my "little man"....

My Mother's Day Gift From Colby

2009-05-10T23:14:00.002-04:00

Just had to say that my Mother's Day with my mom and my two boys was WONDERFUL....

And Colby's gift to me? Not one seizure today!!! Thank you Colby and thank you God!!!

My Boys and Me...

2009-05-10T16:59:00.007-04:00

Mommy and Shawn-Michael (Age 2)

Mommy and Colby (Age 6)

This is MY day..."Mother's Day"....The proudest day of the year for me....

Two of my favorite photos of me with my boys....They are my life.....

Mother's Day

2009-05-10T11:03:00.010-04:00

It is Mother's Day.....

I adore Mom...She is filled with faith in God....Is smart as a whip, just gorgeous (former beauty queen), kind, personable, hilarious, and extremely talented (singing church solos, painting and drawing beautifully, keeping a gorgeous home and grounds...even a whiz on the computer!) And most importantly, always wanting to help others...

Mom adores her grandchildren...All five of them....And her boy, Colby?...Well, he is her special joy....He loves his "Nannie"...

I am so very grateful for my dear, sweet mom....I credit her for trying to instill her positive attitude in me...I remember Mom buying what I thought was this rather odd book back when I was a little girl....She has practiced the lessons she learned from that book throughout her life....It was "The Power of Positive Thinking"....It has served her well through the years, especially when Daddy began showing symptoms of his illness...She took such wonderful, meticulous care of him...At the end, when he couldn't move anything but part of one hand?....Well, you can only imagine....When you have been married for over 50 years and you were in love like they were?...I just can't find the words....She is a true hero to me....Watching her take care of Daddy as she did and still maintaining her optimism....And my life with Colby somewhat mirroring her's?....We have a special bond, Mom and I....It goes beyond the usual mother/daughter thing....She "knows"....

I don't know what my boys and I would do without this precious lady in our lives....And we love her dearly...

Happy Mother's Day, Mom!!!

Colby Loving Life (Photos)

2009-05-06T21:36:00.004-04:00

Some cheery photos on a dreary day!!!

Colby - Age 8

Therapeutic Horseback Riding at School

Colby loved his horse!

King & Queen of Hearts

Look how proud Colby is!

Ladies' Man!!!

I'm NOT a nurse by trade....

2009-05-01T20:41:00.007-04:00

This has been a disappointing week...I was hoping we were making progress with Colby's new Rx, but he has had seizures every day this week...On Tuesday, I called Dr. Neuro to find out about medicine changes...We actually decided NOT to increase the Banzel but DECREASE the Zonegran by 50 mg. I don't know if that is the reason he didn't do well or if this was just a coincidence...Sometimes he has worse weeks than others, no matter what we are doing with meds...So, today I faxed over his seizure calendar for April (I have been documenting numbers, times and types of seizures for years now), along with some questions...Nurse Kathy called me back and said we would keep the Zonegran at this new lower dose and increase the Banzel by 100 mg. per day at night...So now his Rx dosages are:

Breakfast:

Trileptal 600 mg.

Banzel 400 mg.

Keppra 250 mg.

Clonipin .15 mg.

Lisinopril 10 mg.

Multivitamin

Lunch:

Clonipin .10 mg.

Calcium 600 mg.

Supper:

Trileptal 750 mg.

Keppra 250 mg.

Zonegran 150 mg.

Bedtime:

Clonipin .15 mg.

Banzel 500 mg.

Lisinopril 20 mg.

Singulair 10 mg.

Benadryl 25 mg.

Flonase Nose Spray

It's funny...I got my degree in English/Secondary Education from an excellent southern liberal arts college. I was planning to teach...Way back when, I was one of those little sissy southern girls who almost passed out dissecting her frog in biology! I detested sickness, etc...I didn't want to be around it...I hated going to doctors and hospitals...Anything would make me gag!

And just look at me now!!!!! I am in the medical field FULLTIME! I don't even get vacation days! Wonder what my salary would be? 24 hr. days, 7 day weeks...Hhhhmmm...Let's try and figure out what I am worth??!! I went from "Miss Priss" to monitoring seizures and changing a 24-year-old young man's diapers six times a day for all these years! Talk about your life taking a totally different path!!! The friends I had "way back when" would not even BEGIN to believe what I am doing right now! They would be so shocked! It is so totally NOT ME!

But it IS me after all, I guess...No frills...No glamour...No more of that sissy "southern bell" stuff...Can't keep the nails polished or the hair done just so...But Colby looks at me with adoring eyes...HE thinks I am pretty cute, no matter what we have been through that day!!!...And I am doing it only out of sheer love and hope for my child...My child, who can't take care of himself...Who will depend on me his (or my) whole life...I may not be teaching classrooms full of students, but I do believe I am doing important work...You parents know what I mean...

One Step Forward, Two Steps Back

2009-04-26T23:30:00.010-04:00

Well, since I last wrote, Colby has not done quite as well. Let me back up...Actually, he had no seizures at all on last Thursday...Yay!!! Then, Friday, he woke up at 5:00 AM, early for him...I heard him stirring around and looked over at the video monitor and saw him sitting up in bed...He started his jabbering and giggling, etc...Sometimes he will do that for a bit and then lay back down and go back to sleep for a few more minutes...So I layed there and watched...Then I saw him fall over with a seizure...It had been days and days since he had FALLEN with one...My heart sank...He had been sitting in the middle of the bed, so he just fell over on the mattress...He sleeps in a full-sized sleigh bed that is pushed up against one wall...And I have a bed railing on the other side...I have laid blankets over the headboard, footboard and rails so he would be protected if he were to fall and hit either side...This was actually the first time I had seen or heard him fall with a seizure while he was in his bed...It made me feel sick...I had been feeling (very naively, I admit) pretty comfortable with him in his bed...That has now changed...I now want to stare at the monitor while he is in bed and constantly watch him if I even hear him move! And it is even more difficult to get to sleep now...I'll be a little selfish here...Colby's bedtime was my time...Now I feel as though I have been somewhat "robbed" of those few free hours...Oh well...

Also, since he had not actually FALLEN for days, I thought we were making progress!!! I had put away my video camera since I had not captured him falling with a seizure (after 7 days of constant filming)...So after this happened on Friday, I got the camera back out and...What do ya know? On Saturday, I actually got one of those types of seizures on film for the doc finally...(I have noticed that many of you parents have posted your child's seizures...I may try and post it if I can figure out how to do it!)...Anyway, he only had one today, and he didn't collapse with that one...It was just a regular drop...I will be calling Dr. Neuro Tuesday to see what the next step is....Probably another increase in the Banzel....Tinker, tinker, tinker...Seems like all we can do is tinker with drugs...

Rx Update

2009-04-22T22:56:00.008-04:00

Colby only had one drop seizure today...The trend is that they are becoming less in numbers and in intensity...He actually has not fallen with one since a week ago (when I started trying to capture one of those types of seizures on film for Dr. Neuro!!)...So (I shouldn't even say this but)...Maybe the Banzel is working...???...Who knows??? The doc says that we probably will never completely stop the seizures, as these type are extremely difficult to control...But we are hoping and praying that he will get some relief...So it is very hard to feel confident, especially with Colby's history with meds...He did fine on Tegretol, Carbetrol and Trileptal for the grand mals...They are controlled pretty well now with the Trileptal...But these drop attacks...They are a real booger!!! Depakote shot his platelets sky high (and didn't help)...Topamax took his appetite away (and didn't help)...He became seriously toxic on a very low dose of Lamictal (and it didn't help with the seizures, either)...Keppra and Zonegran? No side effects but no real help, either, even though he is still on them...Adding Clonopin has helped the drops more than anything we have previously tried..."He likes Clonopin," as Dr. Neuro says...So now we have added the Banzel...Still no bad side effects (400 mg.AM/400 mg.PM), except he did seem pretty wired today...And he woke up early (5 AM) and didn't really nap any...I hope that doesn't continue...So...We shall see...It is all about tinkering with these meds and doses...I HATE Rx changes!!! All we can do is try...My prayers are continuing and my fingers are crossed!!!

The Applause

2009-04-20T10:40:00.010-04:00

Have you ever entered a room and received a round of applause? It has happened to me...Almost every morning for 24 years...I don't know too many "morning people"...But how could you NOT be if you had that greeting? Colby LOVES to clap...LOUDLY...He claps louder than anyone I know...It is amazing!!!...That is one of his favorite things to do and has been since he was probably 6 months old...He claps when he is happy (which is most all of the time!)...He claps playing games...And he claps when his tired ole mama stumbles into his room every morning, sometimes dreading another day of seizures...That is when everything changes...I change...Colby has that power over me...I can actually feel myself physically, mentally and emotionally being somewhat transformed...It is an automatic "attitude adjustment"...The feeling may only last a little while...Or it may last all day...It depends on what kind of day my boy is having...But my days do begin that way...And that is my reward for being Colby's mom...It is so worth it....

Kippy Dog

2009-04-18T17:38:00.005-04:00

Kippy...

Kippy has been staying with us this week...He actually belongs to my mom...She went to the beach with my sister and her family, and we had the pleasure of his company...He is a funny little thing...He LOVES Colby...He wants to be right there beside him, even sneaking into Colby's room at night and sleeping on the floor by his bed! It's like he knows Colby is different and needs protection....

Our Life: Almost a Sitcom

2009-04-18T16:56:00.003-04:00

Well, it has been five days now since I have had the camcorder recording...Colby is not cooperating...He has had several small seizures, where he just bows his head, but Dr. Neuro has already seen them...I am trying to get one on tape when he falls completely to the floor. Maybe I just need to throw out all his medication and just keep on recording! Seems that is working just as well as medication right now! Oh well...He is my little stinker! I look over at him right now, and he has this devilish little grin on that adorable face...Is he driving me crazy on purpose???!!!??? We NEVER do anything "normal" in our home...It is like a bad sitcom...Uncontrolled seizure disorders require your lives to change...completely. Your life revolves around seizures...What you do, where you go, when you go...You do weird things like surround your 24-year-old with pillows to protect him while he watches TV, set up cameras, use baby monitors and video cameras at night, keep your "seizure calendar" and notebook right by you so you can record your child's life...You can't even hardly leave the room for more than a second!...You can't simply run outside and get the mail until after you get him in bed at night...In fact, in our case, the danger seems to subside somewhat once Colby is asleep...And that brings me my freedom...Freedom to get some housework done, shower and wash my hair, stretch out and watch some TV or read...I can take a deep breath for awhile, even though I am still listening and watching monitors thoughout the night...Still on high alert...You can't ever turn that off...It's NOT a normal life, but it IS normal for us...You learn to adapt...Besides, I have been doing this for so long now that I wouldn't know how to act if things were different...or, do I dare say "normal" !!

A Watched Pot...

2009-04-15T11:27:00.003-04:00

Colby is trying to mess with me...Again...You see, I have some of his seizures already on tape for Dr. Neuro to see, since it is more helpful than my explanations...As I have explained, these drop seizures have become more intense over time...He used to just bow his head with them...Then he began leaning forward all the way over at the waist...Now, the majority of the time, he wants to lose all muscle tone and completely collapse in the floor...I don't have this most recent type on video yet...So yesterday, I plugged in the camcorder to the wall and left it running from 8:05 AM until he went to bed at around 8:30 PM. (He had already fallen with two seizures between 7:15 and 7:55 AM...) Well, guess what? No more seizures all day! So I decided to try again today...So far, NONE! And it is noon! "A watched pot never boils..." Maybe I need to just leave the camera on!!!

Pill Popper

2009-04-13T22:31:00.013-04:00

Colby's Pills For One Day

No decrease in the number of seizures yet...He had 5 yesterday and 5 today...And he is still falling to the floor with most all of them...It doesn't sound like many...Especially when he has had alot more than 50 in a day (I quit counting, it was making me so sick)...But ONE is too many...Colby is now on 300mg AM/400mg PM of Banzel...No bad side effects (knock on wood), but he had one of his "sleepy days" today...It is no wonder with all of the chemicals that I have to put daily into his little 110-pound body...And add his nosespray and eyedrops for his allergies...Valium to the mix if he is having clusters that won't stop...And antibiotics when he gets one of his many sinus/ear infections...If we had that much medication in our bodies, we wouldn't be able to even walk!!! Poor guy...I am so hoping that, if we have some success with the Banzel, we can reduce or discontinue some of the seizure meds...That would be wonderful!!! I mean, five seizures meds...What a cocktail!!! Those, added to his heart and allergy meds...Amazing...But he continues to open his mouth for each pill and swallow with a smile on his face...That beautiful, beautiful, trusting smile...

Colby Photos

2009-04-09T22:44:00.006-04:00

Christmas 1986 - Colby and Big Brother

Colby - Age 2

Colby's First Day of Preschool

The Beast

2009-04-09T20:40:00.006-04:00

Well, Colby almost went another two days without one...Yay!!!...That is progress...I was getting my hopes up...Again...A little, anyway...I tried not to, but I couldn't help it...I was feeling pretty good and starting to relax a little...Again...We were in his room watching TV before I put him in his bed...This is our nightly routine...He was doing great...He had his snack and his five meds...Very alert, laughing, singing, watching TV, patting my leg...Then he just collapsed with a seizure...No warning, as usual...My heart sank...And I got that yucky feeling in my stomach...That wave of nausea that happens each and every time...Colby must have had hundreds and hundreds of these things!!!...For years!!!...I still react the same...I wonder if I will ever get used to them?...You'd think seeing them over and over, day after day, you'd get desensitized...But you don't...Or, should I say this mom doesn't...I just can't seem to get there...I keep trying and trying...But I continue to react the same...Feel the same...That sickening disappointment...When you have a child like Colby, particularly one that is totally dependant on you for everything, as he is, the added seizure disorder actually becomes the guiding force in your life...Every big or little thing you do, no matter how inconsequential...Every big or little decision you make...It all revolves around this "Beast"...It is a Beast...It ravages your child's little brain!!!...If you are lucky, The Beast will hide for a day or two...But then it seems to always reappear...You believe you are never, ever completely rid of it...It is out there, lurking somewhere close by...It haunts you...So you watch and you wait for another episode...You can count on it, just like the sun rising each day. The Beast always returns...But you still continue to pray that God will prove you wrong and get rid of it totally...Completely...And that your child will get that miracle he deserves...

Oh well....

2009-04-05T16:08:00.010-04:00

Yep, I jinxed him...I shouldn't have even written the words! I told my sister that I shouldn't have written that he was having less seizures...Since my last post (on April Fool's Day, no less!), Colby has been having more again...Not more than he was before starting the Banzel...But he is back to having at least several each day, and he has been falling with some of them again...He is still acting perky and more "with it", though...What a blessing that is!!!!...He is still interacting more with people and his environment...That part is still SO encouraging...Praise the Lord!!

As for the seizures, though, maybe those few good days were just a fluke...Maybe he is not on a large enough dose of his new Rx to even make a difference yet...Or maybe I just prayed harder those few days...Maybe...Maybe...Maybe...After nine years of this, you'd think one would quit trying to figure it all out and analyze it and try to find the cause...You'd think...But even after years of trying new things, you go into each medication change with some hope...At the same time, you try SO HARD not to have too much hope for fear of that disappointment..You try SO HARD not to set yourself up for that sinking feeling again and again...And you do get a little better at it as time goes on...You prepare as best you can for the eventual letdown...And you also start saying things to people like "Well, I doubt it will help"...or even "This medicine probably won't affect the seizures at all"...You appear pessimistic...But you are really talking yourself into not having high expectations...You are being realistic, not pessimistic...You can't help but have that hope...I think it is just human nature...You just don't want to fall too far when the bad days come again...Because those days more than likely will come...

We dream of healthier days for our children...So now we just continue on...We keep trying...And we will continue to pray...

Will I jinx this?

2009-04-01T21:28:00.007-04:00

It has been one week since we increased Colby's Banzel...Two weeks since he started it...And Dr. Neuro directed us to increase it by another 100 mg. at bedtime tonight...The seizures seem to still be waning...He had none at all yesterday and only one this morning, before his morning meds...I am to call Doc back in several days with an update...I still don't see any bad side effects as of today...

What I am seeing are some interesting behaviors the past two or three days...Most are things I have seen in the past that I have not seen in a good while...Is the old Colby coming back? He seems to feel better...He seems to have more sparkle in his eyes...He is giggling and laughing more...He is trying to "escape" the barricade of pillows I have set up for him, picking them up and throwing them out of his way so he can move around more freely (which means watching him even more carefully so that he doesn't fall if he does have a seizure!)

Colby is also following my commands more readily, like he used to...Simple instructions like "wave bye-bye to Nannie" or "come to Mommy" or "give me your video"...I am also hearing him vocalize more and more each day...All sounds and parts of "words" (or HIS version of certain words) that I used to hear all the time some years ago...What music to my ears!!!! And speaking of music, he is singing more again...(Well, Colby's version of it, anyway!) He used to just sing "Aaaahhhh"...Now he has started to sing "La La La La La"...Now, he has never made the "L" sound to my knowledge...

Could it be that the Banzel is helping the fog to begin to lift a little? You would think that he would be even more groggy now that he is on five seizure meds, a heart Rx and two allergy meds! But it's just the opposite...When we have started new drugs in the past, there were times when the seizures would lessen for a time...But I never saw this effect on him...Is Colby "waking up" again?

Is Colby playing a joke on me? It is "April Fool's Day" ya know...I almost want to delete this blog for fear of jinxing him...I won't, though, because I want to share this news...But I don't want to make too much of this for fear of disappointment if it doesn't last...So I won't be holding my breath...I'll just continue to breathe (deeply) and pray...

Pillow Boy

2009-03-28T16:18:00.026-04:00

It is Saturday afternoon, and Colby and I are watching the rain. He still seems to be doing OK on the new Rx. I spoke with the nurse at the neuro's office yesterday. Our plan is to continue on with this dosage and I am to call them back this next week. They were pleased to hear that he has no bad side effects so far. At this point, the number of seizures has remained about the same since before starting the Banzel, but over the last few days, when he does have them, the majority of them don't seem to be quite as intense as they were. Because you never know with these things, I have to keep a vigil right beside him at all times. It is actually quite comical to see me run back and forth to the kitchen or wherever so that I can get back to him immediately! And I have started calling him "Pillow Boy," seeing that I now surround him with big pillows when he sits on the floor and watches his videos!

You see, when Colby first began with the drop seizures, he would gently "bow his head" for a few seconds...That was it...It wasn't terribly scary...As time went on, however, he gradually began to lose some muscle tone during the seizures and eventually began falling to the floor...In January, he was crawling into the kitchen to watch me fix supper, and he fell on the hardwood floor and split his chin wide open...Brother had to call EMS, and we spent the evening in the ER...So now I am paranoid not only with the seizures themselves, but with the falls associated with them...

So "Pillow Boy" it is! You do what you have to do, no matter how it affects your home decor!!!

Colby's Birth

2009-03-26T14:44:00.030-04:00

Proud Big Brother With Colby (4 days old)

Laughing Colby (4 mos. old)

Strolling at Hilton Head (7 mos. old)

Colby With His Curls (10 mos. old)

Colby Trick-or-Treating (1 year old)

Soooo Happy!! (18 mos. old)

"Rockin' Colby" (21 mos. old)

Colby With His "Care Bear" (2 years old)

Colby (Age 2) With Big Brother (Age 5) in Nannie's Flower Garden

Since I don't have really good news to report, I thought I would share some pictures to hopefully put a smile on our faces today...You can't help but feel better when you see the faces of babies and children!!!

So...Well, I spoke too soon...The two-day reprieve is over...Colby has had two seizures so far today...Oh well...Not a surprise...He seems to be feeling well, though...There have been some days when he has had ~ 50...So, even though I want the seizures to be TOTALLY controlled, I thank God for these days when there are only a few...I am to call and check in with Dr. Neuro tomorrow re: how we are doing on the Banzel...

Colby was a planned child...My oldest son was a little over two, and we wanted our children to be fairly close in age...I had a very healthy pregnancy...I gained ~ 30 pounds and went by the book as far as what to do and not to do...I had only about 10 days of morning sickness (3 months of it with my first), and the biggest complaint I had was terrible heartburn towards the end...We fully expected no problems at all with the baby, but the doctors were worried about how I would do...I hemorrhaged with 4th degree lacerations, requiring over 100 stitches when my first child was born because they did not do an episiotomy...(Military hospital experiences aren't always the best!)...Colby was actually born three weeks early (thank goodness...He weighed 9 lbs. 6 oz.!!)...I had an 8 hour typical labor and delivery, and there were no problems with me this time...Only with the baby...He was born with a little larger than normal head circumference, but nothing that Dr. Neonatal was concerned about...He did have some fluid in his lungs, which required him being under an oxyhood for two days in the neonatal unit...They did complete testing...CTs, Xrays, EEG, EKG, genetics, blood...the works...All tests were perfectly normal...They did comment that he had low set ears (?) and wide-set eyes...So? Was that a problem? We could deal with that, right? Once the lung situation was resolved, Colby was dismissed a "healthy baby boy"...Little did we know...

I recall my Dr. G.P. (General Practitioner) saying "When a baby is born with even one small problem, you look and look and look until you find more...And we hope we don't..." Boy, was he prophetic....I'll never forget his words...

Waiting

2009-03-25T20:56:00.008-04:00

Well, I don't even want to say it for fear of jinxing the situation...NO SEIZURES (that I have seen) IN TWO DAYS! I can't imagine that the Banzel is already helping Colby...It's probably just a coincidence...He has been on only 200 mg. for one week...And we just added the morning dose (another 200 mg.) this AM per Dr. Neuro's instructions. We have had some seizure-free days after begining other new meds, but Doc has attributed it to what he calls the "honeymoon period"...And the honeymoon always ends...So far I don't see any negative side effects, which is a VERY good thing...Colby has a tendency to become VERY TOXIC VERY QUICKLY...So in that respect, so far so good...Maybe this "honeymoon," will never end...Do I dare say that? Well, I will just wait and see...
I have done an awful lot of waiting throughout Colby's life....Waiting on him to sit up (~ 1 year)....Drink and feed alone (2-3 years)...Crawl, first "commando" then on his knees (3-4 years)...Etc., etc....Years ago, he did stand briefly with a walker and take about 5 steps...But that didn't last long...His weak muscles couldn't bear his growing body height and weight...

I've also done alot of waiting in many doctors' offices, labs, hospitals, surgical waiting rooms, therapy offices...Waiting by the phone for CT, MRI, EEG, EKG, Echo, Xray results...I am grateful for the times when the results were not as bad as what I had expected...I always seem to prepare for the worst so that I can hopefully be pleasantly surprised...It's funny how we learn to play these protective little games in our own minds...You cope as best you can, though...By nature, I am a very patient person...Maybe one reason I was meant to be Colby's mom...But the waiting does get old...But you just keep on waiting...

Seizure Patrol

2009-03-24T16:43:00.012-04:00

"Seizure Patrol"....That's what I call it. That is what I am doing today...And lately, every day...It's my job...I'm Colby's mom...

This is my first time to write about my son, and I think I am doing this as much for myself as I am to share information with other parents. You will have to bear with me until I get the hang of it...

The biggest challenge with Colby lately is seizures...Forget the fact that he can't walk or talk, etc...That's beside the point...It's the seizures that rule our lives...Watching and waiting and documenting and medicating...and most of all, praying for them to cease...

Colby has been on many seizure meds over the years, none of which have helped with the drop seizures for more than a few days. His grande mals, thank the Lord, are under control. Currently, he is taking Trileptal, Keppra, Zonegran, Clonazepam, and we added Banzel last week. This drug came on the market about 6 weeks ago, and it is supposed to specifically target the drops. It is very frightening, as Colby is super-sensitive to meds, with a tendency to become very toxic very quickly. It is also daunting since this Rx is brand new...Not much past information to go on...We are only on the beginning dosage, which will be titrated up over a period of time until, hopefully, we get some good results...So, as expected, there has really been no improvement yet...

So we wait...We stay on "seizure patrol"...And we pray...