A baby’s life is full of firsts.  First bath, first holidays, first tooth, first steps etc.  You get the picture.  There is also the first family vacation.  While for some that first vacation may be to visit family or perhaps a trip to the beach, our first family vacation was to  Rochester, Minnesota and the Mayo Clinic.  Do we know how to live or what?

It was the middle of March 2010 when we set out for a week’s stay in lovely Rochester.  The purpose of our little vacay was to find some answers to help our little boy.  I don’t recall any more how many hours it took us to get there, but the magic of the Google machine tells me it is about a 4 hour drive from our house to Rochester, so I’ll go with that.  What I do recall is that we set out under the cover of darkness on a Monday morning so that we would arrive in time for our first appointment that day.  At this time, Owen was seizing several times a day, and most often, his seizures would occur while he was sleeping.  Since we began our journey at night, I got to witness plenty of seizure activity as we made our way to Minnesota.

It was just a few weeks earlier that our neurologist had floated the boat about having Owen evaluated at the Mayo Clinic.  Originally, our appointment was to take place in May; however, that was unacceptable.  I couldn’t believe they were going to make us wait that long.  We couldn’t wait that long for answers.  I freaked out and called our neurologist indicating that the wait was simply unacceptable.  I for sure was going to have a nervous break down if we had to wait that long.  We were so thankful when she was able to have our appointment moved up several weeks to mid-March.

The Mayo Clinic is a very efficient operation for sure.  The plan was for Owen to be evaluated by a neurologist, ophthalmologist and to have an MRI and overnight EEG, among other things, and all those things were planned to occur during that one week.  Our hope was that by the end of the week, we’d have some answers and a concrete plan for combating Owen’s seizures going forward.

For our week’s “vacation,” we booked a room at a local hotel.  In hindsight, we could have saved a lot of money had we looked into the Ronald Mc Donald House, but we were new on this special needs journey and had no idea about those kinds of resources.  By the way, the Ronald Mc Donald House is awesome for families with sick children.  I think I need to dedicate a future post to them.  Silver lining, the hotel had a pool, and Owen got to have his first swim while we were there.

Again, as the passage of time as dulled my memory, I don’t recall each and every detail of what occurred during our stay, but there are some thing I recall vividly, for better or worse.  I remember stressing out over the wait for the MRI.  Because Owen needed to be sedated for the procedure, he wasn’t allowed to eat.  I decided I couldn’t eat either because I wasn’t going to eat in front of him.  I have a tendency towards hangry-ness, so skipping a meal is not good for my disposition, or the well-being of those around me.  Not proud of it, just saying.

I also recall seeing a mom about my size trying to wrangle her 8-12 year old daughter into the room to have her MRI.  The girl was not having it, so mom had to pick her up and carry her in.  The girl was almost the same size as her mom, and I marveled at how strong mom was.  Secretly, I hoped that I wasn’t witnessing my future.

I also recall Owen’s overnight EEG.  This required us checking into the hospital.  I elected to stay with him overnight.  The screen that was showing Owen’s brainwaves in action was in line with the couch I was sleeping on.  I remember not sleeping much that night, as I fixated on the screen which showed Owen’s angry, chaotic brain activity.

There were also some happy memories too.  I remember how we made fools out of ourselves trying to get Owen to smile while he was hooked up for his EEG.  Prior to leaving for Rochester, Owen had gotten a new toy which featured a dancing monkey.  There was a song the toy sang.  I don’t remember all of the words, but one line was “dance like a monkey and laugh, laugh, laugh.”  My husband and I both acted out the lyrics in an attempt to amuse Owen.  Mind you there are cameras in rooms where an EEG is being done, so I’m sure some of the medical staff witnessed our antics and got a good laugh.  So be it!

There was also the young gentleman who got on an elevator with us at the clinic and told us Owen looked like the Gerber baby.  I was flattered and surprised that someone his age knew who the Gerber baby was.  I also remember Owen taking his first swim.

By the end of the week we had a plan.  The plan was for us to try a new medication that was supposed to be very effective in stopping the seizures caused by Infantile Spasms.  The medication was Sabril, also known  as Vigabatrin.  We were aware of this medication through our internet research.  Like any medication, there are side effects  We had to sign off on a document which outlined the side effects and confirming our understanding of them.  I recall it stating it could affect his vision and cause white matter changes on his brain.  I’m not even sure if I understood what the white matter changes meant, but I knew I didn’t like the sound of it.  Reading the document and choosing to sign it was very emotional for me.  While I knew I had to because the medication had a chance to help Owen, it was also difficult to make a choice on behalf of another human being that could change his life forever.  At some point would he resent me for it?

Anyway, I choose to sign and we left Rochester with new hope.  Perhaps this would be what Owen needed to stop his seizures.  By now, we had been on this emotional roller coaster of a journey for four months and we were exhausted.

We thought, or should I say hoped, the storm had passed.  The spasms were gone and Owen would go on and lead a normal, happy life.  We’d look back one day and wonder how we made it through that terrible time.

We thought, or should I say hoped, the medication worked and our little man was spasm free.  Man, that stuff was expensive, but worth every penny because our boy was fine.

We thought, or should I say hoped, we were waking up from the nightmare of the past few months.  Wow, that was the worse dream EVER!  Unfortunately, that was not to be the case.  Little did we know then but the nightmare had only just begun.

In late February 2010 as we began to wean Owen off ACTH, the odd little movements began again.  At first, we thought we were seeing things.  We’d become so paranoid that every little move he made caused us worry.

At first, we didn’t want to acknowledge it.  No, this can’t be happening again.  The medication had worked, right?  The spasms were gone, right?  They had to be gone!

At first, we didn’t want to utter the words out loud.  The spasms had returned.  He had relapsed.  The medication didn’t work.  It’s as if it wouldn’t be true if neither of us spoke of it.  Unfortunately, whether said or left unsaid, the medication had failed to keep Owen’s spasms at bay for the long term.

It’s not like we hadn’t been warned that might happen.  We were told it might not work.  There were no guarantees.  It didn’t work for everyone.  But our minds couldn’t go there.  It was going to work for Owen.  It had to work.  It needed to work.  Failure was not an option!  We simply couldn’t wrap our heads around what would happen if the medication failed.

What we feared had become reality.  There was no denying it any more.  Owen’s spasms came back with a vengeance.  We were heartbroken, devastated, crushed, terrified and down right pissed.  This was all so not fair.  What do we do now?  Was else could be done?

We knew the longer the spasms went on, the bleaker the outlook for Owen.  It’s like every time he had a cluster of spasms, we felt him slip away more and more.  It might sound like I’m being a bit dramatic to draw you all in, but not really.  That’s how it felt at the time.  Every cluster of spasms he had felt like the end of the world.  They had to be stopped!

During this time, we had biweekly appointments with our neurologist.  Her recommendation for the “next step” was an evaluation at the Mayo Clinic.  The Mayo Clinic?  In my mind, the Mayo Clinic was a really big deal.  It was for those people who had mystery illnesses no one else could cure, or those who were willing to try experimental treatments when all else had failed.  I’m sure that’s not really the case, but I had never known anyone who had gone to the Mayo Clinic, hence my perception of it.  We agreed to go there.  The Mayo Clinic should certainly have the answers to make the spasms go away, right?  They had to, because they needed to stop.

Today I wear red in support of the American Heart Association’s national movement to end heart disease and stroke in women.

This is important to me because I lost my grandmother to a stroke when I was 16.  She was 68 years old when it happened.  She was an older woman, yes, but still too young  to die, in my opinion.  Her sister had a stroke as well.  She was even younger than my grandmother when it happened.  It did not kill her, but she was robbed of her ability to speak and walk and had to learn how to do just about everything again.

What happened to my great-aunt and grandmother really scared me, and I was going to make sure I didn’t suffer the same fate.  My grandmother was very overweight her whole life.  I figured if I tried to maintain a healthy weight, I would not suffer the same fate.  My great-aunt was a smoker.  I figured it I didn’t smoke, I wouldn’t suffer the same fate.  I was wrong.  Unfortunately, I would suffer the same fate, and at a much younger age.

On Sunday, August 9, 2009, I had a stroke. An ischemic, embolic stroke.  I was 43 years old.  It happened only 10 days after Owen was born.  I don’t remember much of anything leading up to it.  The first thing I recall is being in the basement at my home, sitting on the couch, with paramedics asking me questions I couldn’t answer.  Very simple questions I should have been able to answer with ease.  I also remember my right arm and leg feeling like dead hunks of meat.  When the paramedics asked me to get up, I couldn’t.  I remember going to the hospital and having an MRI.  It was after this that I was told I had a stroke.  I thought they were kidding.  That can’t be true!  I was in excellent health and always had been.  There must be some mistake.

I spent the next several days in the hospital following the event while tests were run to determine the cause.  They could not definitively tell me why.  The only risk factor I had was having recently given birth.  To me, not knowing why it happened was scarier than knowing why.  They sent me home with instructions to take an aspirin a day.  To me, that sounded akin to rubbing some dirt on it.  I know aspirin can thin your blood, and thinner blood does not have a tendency to clot as much, hence lowering the risk of a blood clot forming and another event.  I was thankful that I didn’t have to be on a stronger blood thinning medication, but I still I couldn’t help wondering if it might happen again.  For quite awhile afterwards, I was afraid to go to sleep, thinking I might not wake up again.

While I was certainly unlucky to have had this happen to me in the first place, I was damn lucky to have survived it with few lingering issues.  Because of the location of the brain where the stroke hit, I do have permanent visual issues.  I do also have some random numbness on the right side of my body.  Other than that, I was very lucky.  I have been able to go on and resume my life pretty much as it had been pre-stroke.  In fact, I think I’ve maybe become stronger.  Although I ran prior to the stroke, it was not until afterwards that I tried to conquer a half marathon.  I’ve now got 11 under my belt.  I also tried to conquer a marathon.  I did, and then did another one.

So today, I wear red to celebrate my victory, and to celebrate others who have survived stroke and heart disease.  I also wear red in memory of those like my great-aunt, grandmother who weren’t so lucky.

So we left the hospital with our little man and his expensive, precious elixir, hoping for the best.  Told that Owen would be immunosuppressed and given it was the dead of winter, we planned to spend the next six weeks that Owen would be on ACTH on the down low, leaving the house only for work and doctor’s appointments.

For some, ACTH works right away.  The spasms go away with one dose or maybe a few more.  We were not so lucky.  Owen’s spasms persisted.  During that time, we lost our baby.  There were no smiles, there was no joy.  He barely opened his eyes.  He seemed utterly miserable.  As a parent, it was incredibly hard to watch.  I wondered what quality of life he’d have.  Is this how it was always going to be from now on?  The thought of that being the extent of his life filled me with dread.

Finally, on day 21, he had a spasm free day.  We were overjoyed.  Even better than that, we got a smile.  I was holding Owen for our evening cuddle when it happened.  My husband wasn’t home at the time to see it.  I called him immediately to tell him the good news and he was just as tickled as I was.  It looked like our baby was coming back to us.  Not only did we have a spasm free day, but we also got a smile.  Best. Day. Ever.

They told us that ACTH had lots of nasty side effects:  high blood pressure, high blood sugar, irritability, and insatiable hunger to name a few.  At first, we had a nurse come to our house at regular intervals to check on him.  Luckily, Owen tolerated the medication well and she felt she no longer had to see him after a few visits.  We seemed to be dodging the side effects they warned us about.

They also warned us there would be weight gain.  I don’t recall how much Owen weighted before we started ACTH and I honestly can’t recall how much weight he gained while on it.  What I do recall is Owen turning into baby buddha.  He began to resemble a little sumo a little sumo wrestler.  The picture I included with this post is a picture of Owen about 4 weeks into his treatment.  His little face got chubby, as well as the rest of his body.  His little belly got so pudgy and hung over his diaper.  He kind of reminded me of those gentleman we’ve all seen on a beach wearing a speedo that is all but hidden by a protruding gut.  Although Owen looked adorable, whereas those gentleman on the beach not so much.

His little thighs got so chubby too.  I remember his neurologist cooing over those cute little, chubby thighs.  Normally, she was a pretty stoic lady, however, she was a mom too, and what mom can resist cute, little chubby baby legs.  You just can’t!

Things were looking brighter at this point.  Our baby’s smile was back and we had 21 days without spasms.  Had the storm passed?  We sure hoped so.

So after that fateful trip to the neurologist’s office, we went straight home and googled Infantile Spasms.  We had never heard of it before and had no clue what it was or what to expect.  It’s funny how your mind can play tricks on you.  I remember when I first read about Infantile Spasms I unconsciously tricked myself into thinking it didn’t sound that bad.  All the stuff we were reading was painting a pretty bleak picture for our boy’s future, but I didn’t see it.  I guess I just wasn’t ready to go there yet.  By the way, I don’t believe it’s grammatically correct to capitalize Infantile Spasms, however, I feel the need to do so because of the large impact the diagnosis had had on our lives.  So for those of  you reading this who are grammar police, I sincerely apologize.

The next day, Owen was admitted to the hospital.  An EEG was done which showed the dreaded hysarrhythmia brain wave pattern indicative of Infantile Spasms. Hypsarrhythmia is very disorganized and chaotic brain activity.  To me, it  looks like a brain that is very angry.  When this type of brain activity shows up on an EEG, the likely culprit is Infantile Spasms, but not always.  Before Owen was given the official diagnosis, they did a test they called the “pyridoxine challenge.”  Sometimes seizures such as the ones Owen was having can be caused by a vitamin B6 deficiency.  If that is the case, all he would need is some vitamin B6 and voila, the seizures would probably be history.  While I hoped this would be the case, somehow deep down I knew we weren’t going to be so lucky.  Don’t ask me how.  Unfortunately, I was right.  The hysarrhythmia persisted.  Within 24 hours, give or take an hour, we went from thinking Owen’s seizures were improving to learning he had Infantile Spasms, a rare, catastrophic form of epilepsy with a  bleak prognosis.

The best case scenario for any child diagnosed with Infantile Spasms is to get the spasms under control ASAP.  The longer they go on, the bleaker the prognosis.  The first medication Owen was prescribed was ACTH, or adrenocorticotropic hormone.  Easy for me to say, right?  Not really.  Had to google it to make sure I spelled it correctly.  The medication was to be given over a 6 week period of time.  First we would gradually increase the dose and then we would begin to taper.  The medication is administered via injection.  We had to stay in the hospital for several days after his diagnosis to learn how to give our a 5 month old baby shots into his chubby little baby thigh.  For some reason, that is not the part that bothered me.  Measuring the dose of medication is up paralyzed me with fear.  I’m not sure if I was afraid of measuring it incorrectly and giving my son the wrong dose, or if I was afraid of dropping the vial of medication.  No sure, but my husband and I tag teamed on this.  He did the measuring and I jabbed the needle into Owen thigh.  Good times!

More about ACTH.  It’s expensive.  When I say expensive, I mean very, very expensive.  I was actually at work when I got the new of Owen’s diagnosis.  My husband was off that day so he took Owen to the hospital.  The plan was for me to come right after work.  When he called he informed me that Owen would need ACTH and told me how much it cost.  Each vial of medication would cost $20,000 and he would need several vials. No, that’s not a typo.  He ended up using 4 vials of that liquid gold.  I remember thinking about how we were going to pay for it on my drive over to the hospital that day…..second mortgage, credit cards, prostitution?  (trying to inject humor in here, so remember, don’t judge)  The hospital was awesome in that they handled the issue of payment for us.  They contacted our insurance company and came back to us with the verdict.  We would need to pay $100 out of pocket.  The lady who delivered the news looked worried like we were going to go off on her.  Quite the opposite.  I was so relieved, I had to fight the urge to run up and hug her.

In addition to the expense, ACTH has some nasty side effects, including high blood pressure, high blood sugar, compromised immune system and irritability, to name a few.  It can also cause weight gain and increased hunger.  We were told a nurse would be coming to our house weekly to check on Owen and we would need to test his blood sugar daily.  Due to his compromised immune system, Owen wouldn’t be allowed to go out much and be around other people.  Thank goodness Owen was being watched by his grandmother and not in daycare, because that would have meant the end of daycare, and perhaps one of us would have had to stop working to care for him.

We spent the next several days in the hospital while they ran tests to see if they could determine the cause of Owen’s Infantile Spasms (more about that later).  We also learned how to give Owen his medication by practicing on an orange.  Once they completed their testing and thought we were competent in giving him his medication, they sent us on our merry way.  It was time to embark on our new reality.  I was terrified, but hopeful that this was only temporary and that one day we would have a happy ending.

The little man who changed my life was born 9 years ago now.  He was born a healthy 8lbs and 12ozs.  Everything seemed perfect, until it wasn’t.  I know I told you a little about our story in my first blog post.  In a series of upcoming blog posts, I’m going to go into more details.  I’m hoping to engage readers, but if that doesn’t happen, at least I’ve documented more of the details for posterity.  I’ve got a pretty good memory, but as the years go by, the details are starting to fade because there is simply too much to remember.

Owen had his first seizure at 4 months old.  It was the day before Thanksgiving and we were getting ready for a big weekend, with family coming to town for Owen’s baptism.  He had multiple seizures that day  In a panic, I called his pediatrician who has the biggest heart ever.  He saw us right away and tried to reassure me that it was probably nothing, but made an appointment for us to see a neurologist the day after the holiday.

Owen continued to have multiple seizures.  We saw our first neurologist the day after Thanksgiving.  She had him admitted to the hospital for tests.  He was released the next evening with a prescription for his first anti-epileptic drug, phenobarbital.  I was devastated that my baby had to be on medication.  I was hopeful, however, that it would stop his seizures.  It didn’t.

Owen continued to seize frequently.  His neurologist increased the dosage of the medication and then added another medication, Keppra, hoping the second drug would do the trick.  It didn’t.

Although his seizures didn’t stop, they seemed to be less intense.  With his initial seizures, his left arm would shoot straight out and his eyes would avert in the same direction.  He would also drool.  His seizures morphed into a series of subtle jerks that didn’t seem like a big deal.  At our next visit to the neurologist, we explained this to her.  We thought this was a good sign.  The look on her face, however, told me otherwise.  Her face went pale and she became very concerned.  My stomach dropped.  That was the first time I heard the dreaded words, “Infantile Spasms.”  She suspected this is what Owen had and told us she was going to admit us to the hospital the next morning for tests to confirm whether or not that was the case.  I remember asking her what his prognosis was if he indeed had Infantile Spasms.  She did not answer me.

This past week we lost a dear family member, my father-in-law.  As you can imagine, it has been a difficult week for our family.  What has made it easier, however, is my special needs son.  Because of his medical situation, he doesn’t understand that Grandpa is gone, and that he will never see him again.  During the funeral planning and funeral, he remained his normal, happy self.  Although it may sound absurd, this is one of those times I’m glad I have a special needs child.  He was spared the pain of having to deal with the loss of a loved one.  Thank God for small blessings.

Hi Everyone!

My name is Jill and I’m the parent of an 8 year old boy with special needs.  This is not only my first blog post, but my first blog ever.  I gave this blog the saucy little title I did because I’m a mom of a special needs kid who also works full-time.  I also like to laugh and don’t take myself too seriously.  I really have no time to blog, much less do anything else other than work and take care of my son.  However, I like to write and I thought it might be fun and a little cathartic to share with others who might be in a similar situation.

What I hope to do with this blog is share my experiences and maybe connect with others who are dealing with similar things.  Maybe we can learn something from one another – but let’s not judge one another, because that’s not cool.  I also hope we can have some laughs!  Let’s face it, we’re all dealing with some serious stuff, so I think a good laugh is needed every once and awhile to stay sane.

Just a little background on us, my son, Owen, began having partial seizures at 4 months old and was diagnosed with Infantile Spasms at 5 months old.  He had a hemisphrectomy at 15 months old and a vagus nerve stimulator implanted when he was three years old.  We’ve rarely had good seizure control.  We had two good years recently, but now we’re back to almost daily seizures.  Good times (sarcasm, of course).

Like I said, I’m pretty busy, so I don’t know at what frequency I’ll be writing here.  Maybe daily, maybe weekly, monthly, who knows.  We’ll see how this goes.  Thanks for stopping by, and I hope you stop by again real soon.