Tuesday, November 16, 2010

Seizure Education In The Midst Of A Whole Lot Of Sports Mania

     Mugs of coffee and granola bars in hand, we headed out bright and early for Iowa City last Wednesday morning.  With an 8 o'clock appointment time, we were still forced to park near the top of the parking garage but at least not all the way at the top this time.  We easily made our way to the Neurology Clinic and were the first ones there.  After a little bit of insurance questioning, we went right into the patient room and started sharing Heath's story with a female doctor.  Not even a nurse or an intern!  We gave her every last bit of information that we could think of and asked several of the questions on our list before she proceeded to do a physical examination.  Then she said that she would share all of that with the doctor who our appointment was really with, and then he would be in to see us.  She actually came back in with him, and amazingly, we did not have to start from scratch all over again!  What a blessing that was!

     Because we do not know yet whether the tumor is active and growing, a lot of things simply cannot be explained at this time.  Once the repeat MRI is done on December 7, that will help us determine our next course of action as far as the tumor is concerned.  If it has not grown at all, then I'm sure we'll need to keep monitoring it for a while, but in that case, it is more likely that it is just a developmental abnormality that showed up on the scan and nothing to really be concerned about removing.  If it has grown, then we'll start delving into what type of tumor it is, whether it's cancerous or not, and whether or not it will need to be removed.  If it's gone, then we'll just praise the Lord for a miraculous healing!  Wouldn't that be a cool Christmas gift?!?

     In the meantime, we had the opportunity to discuss with this doctor, the epileptologist, all the things related to the seizure.  My understanding is that if seizures come randomly out of nowhere for no good reason, then a diagnosis of epilepsy is probably given, but if seizures come as a result of a high fever, infection, etc., then it's not considered to be epilepsy.  The doctor made a point of saying that just because we were being seen by an epileptologist in an epilepsy clinic does NOT mean that Heath has epilepsy.  It's too early to make that determination.  In fact, he was even cautiously calling it a seizure.  I'm not sure I understand why that term is so carefully used, but I'm thinking that in our case, it has something to do with the fact that no one actually saw Heath's "episode," and therefore, there is hesitation in labeling it a seizure.  In our minds, it was sure a seizure, and until they come up with some other name for it, that's what we'll continue to call it.   

     We were able to discuss with him all of the things that had been lurking in the back of our minds as far as the seizure.  My dad's family does have a few members who deal with them, so we gave them as much information about all the family genetics that we could.  We discussed the tics that Heath has struggled with throughout his lifetime and the eye condition, keratoconus, that he was diagnosed with a year or two ago, and this doctor felt that neither one had anything to do with the seizure.  He explained to us that maintaining a healthy lifestyle by getting enough sleep, eating properly, exercising regularly, limiting caffeine, and avoiding stress will all help in preventing seizures.  It's just a good idea.  In other words, those factors won't necessarily cause seizures, but it sure can't hurt to take good care of yourself just like you would to prevent anything like heart attacks, strokes, etc. 

     Finally the consultation boiled down to the decision of whether or not to have Heath continue on the Dilantin medication or not.  We had been confused early on by two doctors telling us not to put him on medication and then the third doctor almost being offended that we hadn't put him on it per his advice.  This doctor explained to us that it's always a controversy in the medical world.  Dilantin has been an effective medication for many years and works well for many people, but there can be some long-term side effects that aren't real desirable.  For instance, it can affect your kidneys, and if you choose to use alcohol too, that can make it a bigger problem.  Other than some initial symptoms which may have been caused more by a flu bug or stress, Heath has felt none of the short-term side effects thus far, so that is a good thing.  In fact, every day I ask him how he feels, and he responds with "Great!"  That does a mother's heart a whole lot of good!

     Seizures typically will come on very suddenly and with no warning whatsoever.  Occasionally people will have some little inkling ahead of time like a funny taste in their mouth or a feeling in their stomach or whatever.  It can be different for everybody.  Obviously if you're prone to have a lot of them, you would be more likely to recognize those symptoms, but if they only occur very occasionally, it would be harder to pinpoint any particular sensation. 

     Sometimes people will have one seizure and never have another one for the rest of their life.  According to this doctor, when people have a seizure, there is a 40% chance they will have another one in their lifetime.  If there is an abnormality in their brain, such as in Heath's case, that rises to 50%.  He gave us an example of a man who had one seizure and then another one 15 years later.  The real dilemma then becomes whether or not you want to be on medication for the duration of your life and thereby take the chance of causing or complicating other physical conditions down the road OR whether you want to take the chance of not being on it and then being more prone to danger to yourself and others if you were to have another one.  Even if you're on medication does not mean that seizures won't happen, but obviously the likelihood is far less. 

     Again, because we do not know yet whether Heath's tumor is growing, we have made the decision to keep him on the medication for now.  When a seizure happens, it's like a thunderstorm in your brain, and we certainly don't need that to happen.  At this point in time, the doctor has no way of knowing whether the seizure and the tumor have anything to do with each other.  There are many pieces to this puzzle.  The doctor ordered some bloodwork to be done just to get a picture of where certain levels are now that he's been on the Dilantin for a while.  We were informed that we wouldn't hear any results for five days, and they actually just came in the mail today.  Everything looks good with the exception of a Vitamin D insufficiency. 

     If the repeat MRI of the tumor on December 7 shows no signs of growth or concern, then this doctor and our neurosurgeon will talk about the wisdom of weaning him off the Dilantin just to see what happens.  Our logic in doing so then would be that while he's not driving anyway, that would be one of the safest times to experiment.  Plus if he waits until some further time to try not using medication and ends up having a seizure again, a new six-month window of "no driving" would start all over again.  That's just a standard restriction given to anyone when they have a seizure.  We'd much rather tack on a couple extra months now if necessary.

     All in all, we are extremely pleased with our new doctor so far.  In fact, both of the ones we saw were outstanding in their bedside manner.  We found them to be very willing to patiently discuss everything with us and walk through the process in a conscientious and methodical manner.  We walked out of there with smiles on our faces because we felt as though all our questions had been answered, and we felt as though a plan had been devised.  Praise the Lord for all of that!

     While sitting in the waiting room waiting for the blood tests, we had an interesting conversation.  This man came around the corner and said to us, "Hey, dudes, what's going on?"  Haley has this thing about loving "cute old men," so I really wanted to get out my camera and take a picture for her because he would have fit the bill, but I refrained.  It was very apparent to us that he just needed someone to talk to, so we listened to his war stories for a while.  Supposedly the "fanny pack" around his waist was the same one he used in the Vietnam War, and he was so proud of it and especially proud of being a Marine.  As a mom, I couldn't help but think about the interest Heath had in the Marines and in the Navy at different times and then wonder how his life would have been affected if he had ever gone down either of those paths, and then there was this real sense of gratitude that washed over me for all of those who have served our country sacrificially.  Veterans Day has probably never made more of an impact on me than it did at that moment in time. 

     After giving up three vials of blood, we checked out and made our way outside to another beautiful 70-degree Iowa fall day!  Heath convinced us to take a little walk around Kinnick Stadium where the Iowa Hawkeyes play football, and then we drove over and saw the Carver Hawkeye Arena where the girls' basketball team was practicing.   

     It's interesting to hear Heath share some of his personal connections with some of the guys who play for the Hawkeyes who are his age.  He brings a little Hawkeye mania to our family, and we even found all of us as a family engrossed in the Iowa vs. Wisconsin game on TV a few Saturday afternoons ago.  If you know us at all, you know that's not a real typical activity for our family, but this fall has brought on way more sports craziness than we've ever experienced in one season. 

     When Haley was elected as one of the swim team captains a year ago, we knew that meant that we as parents were actually elected too.  It is a huge job, and we went into it with some trepidation.  We have been learning all the intricacies of the sport right along with her, but she had practices every day with a coach, and we just had the occasional meets to attend with other parents who all seemed far more knowledgeable than us.  Let me tell you . . . it was a little intimidating, and we were pretty clueless throughout the first two years!  Last year we finally started getting a grip on it, and now this year with Haley as a senior and Kelsey as a freshman, we dove in (pun intended!) and did everything we could to support this unique opportunity that we were given with both girls on the same team.  We even bought matching shirts this year and wore them proudly to every meet! 

     When they joined the team, they agreed to being at school at 5:15 a.m. two mornings a week for swim practices, two mornings a week at 5:45 a.m. for weightlifting, every day after school for swim practices until 5:30 p.m., and then again on Saturday mornings for at least a couple hours.  The moms take turns bringing breakfasts to school for them every morning, they provide other occasional team dinners and Saturday morning breakfasts throughout the season, and they feed both teams at the school after every home meet.  These girls eat well throughout the season! 

     They are a closely knit bunch because of all the time they spend together, but then they are together even more because of all their other traditions:  the annual kickoff picnic, the car wash fundraiser, the triathlon, the scavenger hunt, etc.  The list goes on and on.  The Friday night before the big districts conference, our yard looked like this:

     It's a tradition.  Every parent gets called ahead of time to get their permission.  One parent commented that their neighborhood loves to see her daughter get all the attention; we actually had a neighbor come and tell us that we got TP'd and that it was going to rain the next day.  We have a parent here who is pretty insistent on getting it cleaned up before morning anyway, so we rallied together and picked up a garbage bag stuffed full of toilet paper.

     The next morning we all went to districts in Muscatine.  The girls did very well, and there was a team party afterwards.  I think they liked having the whole family at their meet!

     The next weekend Heath's friend Ryan came out for the weekend, and they headed to Chicago for an overnight visit with Heath's friends at Moody.  We had our big annual compliance meeting at the office all Saturday morning, and Harris and Keaton spent their afternoon plowing with a tractor club that Harris belongs to.

     The girls and I were in Muscatine again for the afternoon at the regionals conference, and then we all reconvened at our office where we held the team party afterwards.  The big event of the evening was to watch the computerized results from across the state flash up on the big screen so everyone could see who all qualified to swim at the state meet.

One crazy bunch of girls!

     As if that hoopla wasn't enough for these normally nonsports-minded parents, the next weekend we got up super early and left for Marshalltown for the state meet!  We were there by 8 a.m. so that we could stand in line in the gym until 11 a.m. when they opened the doors for the seating, and then at noon the actual event started.  Crazy stuff.  Haley and I had gone together last year and had a blast, and of course Kelsey wanted to go this year too, so we convinced Harris that it would be fun for him to go with us.  Does he look like he's having fun on that gym floor? 

     The meet was extra fun for us because our biggest competitor ended up being the West Des Moines Valley team which is coached by my cousin Shawn De Boef.  I was so proud of both teams that at times my eyes were welling up with tears because these girls have all worked so hard to get this far!  The Ames team mopped up in 1st place, but the title for 2nd and 3rd came right down to the very last race of the day.  We ended up losing to WDM Valley by like .4 of a second, so it was a really super close, fun, and bittersweet finish.  They beat us overall by 4 points.  By the time we got back and had one more team party, I think Harris was convinced that it was a fun day that he would do over again, even though his female passengers were very sleepy while he was driving.  He's such a trooper!

     We broke away from swim season last Friday and took the youngest three kids to watch the Bettendorf Bulldogs play in the state semifinals at the Uni-Dome in Cedar Falls.  Even though we lost to Iowa City 21-7, it was a fun family outing for all of us.  Keaton thought the whole experience was pretty cool and enjoyed sitting with his future Bulldog teammates who dream of playing there in 2017, and the girls enjoyed hanging out with all their friends.  We had really hoped to watch Haley's class of 2011 from Pella in the state finals game this weekend, but they lost their semifinals game at the Dome last night too. 

Our nephew, Karson, who could have been down on the field with the team, but because he recently broke his leg in a football game, he played with the drumline instead.

     Saturday morning came, and Kelsey and I launched head first into preparation mode for the final event and responsibility of our swim season:  The Banquet on Sunday night.  Because the other captain moms had done a lot of the preparations for the state meet, my role became chief coordinator and decorator for this special event which commemorates the season.  Decorating is NOT my natural giftedness, and it takes a LOT of stressful thinking for me to come up with a plan, especially when the budget is so limited, but once the creative juices are flowing, then they have a way of getting away with me.  Before the weekend was over, the whole family was heavily involved, and it took every last ounce of commitment they could give to help me pull it off successfully.  The two fish signs that adorned our front yard all season long became my inspiration.

     Kelsey, our artist, was given the first task of creating a much smaller version of the fish so that I could scan it into my computer and create an SVG cut with my SCAL software that I could cut out with my Cricut.  (My scrapbooking friends will appreciate that lingo.)  That little machine just chirped and chirped all night long as we cut out sheets and sheets of fish, cupcake wrappers, and other accessories.  Kelsey became the chief artist of the project. 

Side comment:  Kelsey cleaned her fish bowl in honor of the occasion and set it there for fun, but her poor fish must have gotten jealous because he died that evening.  Sad.
     She did most of the drawing herself, but everyone else pitched in too by assembling, gluing, cutting and curling ribbon, helping with Sunday lunch, cleaning up, and picking up the balloons and cupcakes.  They were all such awesome help, and there is no way I could have done it without any of them, including Jenny!  Finally it was time to load the van with all our goodies and head over to The Lodge and get everything set up. 

     The event was a smashing success, the seniors were honored for the evening, the team had fun, and that's all that really mattered. 

     This season of our lives has come to an end.  It's been a fun, exhausting, and exhilarating ride, and we anticipate doing it all over again when and if Kelsey is chosen to be a captain in a couple of years.  We are so incredibly proud of both our girls (and our boys, of course).  As completely opposite as they are, they have found common ground here and drawn closer together.  They have learned so much, done so well, and been great role models to their teammates.  The energy they have poured into this program has been incredible, and we trust that the benefits they have received will serve them well the rest of their lives.  It's definitely given us a whole host of treasured memories.  Thank you for letting me share them with you. 

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