The Epilepsy Center

Yesterday Aaron had an appointment at the Epilepsy Center for his regular check-up.  Thankfully, his nocturnal seizures have lessened over the past few months – or we’re not hearing them as we sleep during the night.  We have a baby monitor on our nightstand but I’m convinced that we don’t always wake up during his seizures.  The Epilepsy Center here in Wichita has been a tremendous blessing to our family, not only to Aaron.  Keith Trevolt, the Nurse Practitioner there, has taken such good care of Aaron over the years – even making a house call one Thanksgiving.  I wrote about that in an earlier blog when telling Aaron’s story.  Keith is a dedicated follower of Christ and everything he does is based on his relationship to Him.  We share about the Lord at every visit and it’s such a blessing. 

Keith is very patient with Aaron and listens to Aaron as he talks about anything and everything.  Aaron tries to cover as many subjects as possible while he has a captive audience.  Keith and I often have to talk over Aaron.  Aaron sits on the exam table and rubs his hands together in excitement as he tells Keith about his latest movie, or game, or Paradigm experience, or a delicious overeating experience.  Like yesterday when Aaron told Keith, “I was with Paradigm at the east mall and I went to Dairy Queen.  I bought that new Chocolate Blast [or whatever it’s called] and after I ate it I had problems.”  When Aaron said he had problems after eating something he means…………intestinal issues……………medically speaking – diarrhea……………..      “Mom, my stomach is making funny noises.  Do you think I’m sick?”  No, Aaron, you ate that triple super duper chocolate mess so now you’re paying for it.  And so Aaron shared that with Keith, unembarrassed and factual, rubbing his hands together happily at this new story that he’s sure Keith really wants to hear. 

Keith acts as if he has all the time in the world.  Sometimes it’s so much fun visiting that I tend to forget the reason that we’re there.  Then we get back to talking around and over Aaron about his seizures and the best course of action to take from this point. 

The Epilepsy Center is without an Epileptologist right now and has been for some time.  We pray that one is hired soon and that this awesome facility that has helped so many Epilepsy patients and families can stay open.  What a huge loss it would be to so many if they were forced to close their doors, or change their dynamic in some way from focusing on Epilepsy in its many facets.  The Epilepsy Center is a big reason that living so far from our families is tolerable.  It would be very hard to leave the excellent care they have provided not only to Aaron, but to Gary and I as well.  They have walked with us through the stages when Aaron had many seizures day and night; his hospital stay for 5 days for his video EEG; his VNS surgery; all the adjustments after that surgery and finally having to turn the VNS off; medicine changes and tweaking;………………I could go on and on.  And I’ll never forget the time that Keith counseled Gary and I in his office, without Aaron there, about the best path to take for Aaron.  He opened his heart and personal experiences with us, and saw my tears and heard our hearts, and was there for us. 

Epilepsy, as with any chronic illness or condition, is more than a matter of pills and doctor visits.  It’s a matter of walking this life-long walk with caring professionals at your side who care and who take the time and who have a heart……………and who pray to the One Who is truly the ultimate Great Physician.

Slipper Socks

When the weather gets cold, Aaron likes to get out his slipper socks and start wearing them.  They become a permanent part of his pajama-wear during the winter. 

Yesterday evening I was on the computer and heard Aaron come thumping loudly down the stairs.  He plopped down in the chair beside my computer desk and started talking.  I turned my chair to look at him and this is what I saw on his feet:

“Uh, Aaron, one of your slipper socks isn’t on right.”  He looked down at his feet and said, “What’s wrong with it?”  I told him that his slipper sock needed to be turned around and so he started turning the one around that was on his foot correctly.  HaHa!  He thought the cute designs should be on the top of his foot! 

So I told him that the little non-sliding thingies go on the bottom of your foot.  And he was surprised at that.   We discussed what the little puffy designs are really for and why that slipper sock needed to be turned around.  He turned the sock the right way and thumped happily back up the stairs.

Funny how many things we take for granted that he should know.  Maybe I’ve never paid attention to how he wears his slipper socks in the past – but I will now! 

Stripped Cheese

If Aaron is given a choice of something to buy at the deli, either at Dillons or Wal-Mart, he’ll choose a Cheddar Pasta Salad 99.99% of the time.  And 99.99999% of the time he’ll order a large Cheddar Pasta Salad.  When it comes to eating, Aaron is definitely a “larger is far better” kind of guy. 

Anyway, today he came home from his group and said, “Mom, I got a Cheddar Pasta Salad at Wal-Mart for lunch.  I got a large [shock!] and I’m stuffed!” 

I was glad that he was able to get the Cheddar Pasta Salad today.  It was last Tuesday that the deli was out of his favorite salad, and he bought those 36 rolls.  A large Cheddar Pasta Salad is better – believe me!

After telling me that he bought his Cheddar Pasta Salad [large -shock!], he proceeded to discuss each ingredient with me – from the “twirled pasta” to the dressing.  “Mom, it has those purple onions.”  Yes, Aaron, and for some reason they’re called red onions.  Being color blind, this doesn’t overly concern him.  Good. 

“And it has broccoli – it’s very crunchy!”  Yes, and good for you, too.

“It has that dressing that you don’t like too much.  Is it mustard?”   Oh, good grief!  AGAIN??!!   Can he not ever tell the difference between mustard and mayonnaise?  “No, Aaron – it’s mayonnaise.  Remember, mayonnaise is white.”   “Oh, yeah!!!  Mustard is yellow!”   For the time being, yes.  Until we talk about it again.

He continued, “And Mom, it has that yellow stripped cheese.”   Well, that’s a new one.  It took me a minute.   “Aaron, stripped cheese?”   

“Yeah!  You know, it’s in pieces.” 

Aha!  Of course!  The grated cheese IS in pieces that are strips.  I pulled out a bag of my grated cheese and we talked about it, and about the cheese being grated. 

I don’t know, though.  I really love Aaron’s descriptive words.  Sometimes I wonder if I ruin a good thing by “educating” him. 

Stripped cheese it is! 
  

Goldfish

Aaron loves to eat Goldfish crackers.  The other night we were watching football and he went into the kitchen to get a snack.  Soon he came back into the family room with his blue bowl heaped full of Goldfish.  He was also carrying an empty bowl.  He got settled again in the big chair that he loves, stretched his legs out on the ottoman, covered his legs with his fuzzy blanket (nursing home style), and proceeded to get his bowls situated just right on his lap.  Things must be done correctly before the serious business of eating takes place!

I felt like I knew what the second, empty bowl was for but decided to ask anyway to see what he would say.  “Aaron, you have two bowls.  What’s the empty bowl for?”    And he replied, succinctly, “Crumbs.”  Now I know that Aaron does get a second bowl when he eats things like tortilla chips or cookies – food that is larger and may be crumbly.  He’ll lean over the empty bowl when he takes a bite and then give the chip or cookie a shake in order to get rid of the crumbs.  Crumbs must never go into the same bowl as the uneaten chips or cookies.  But Goldfish are very small and you don’t bite into them, creating crumbs. 

I watched Aaron out of the corner of my eye as he ate the Goldfish.  Every now and then he would toss a Goldfish into the empty bowl.  He would toss it rather quickly, like it was almost hot or uncomfortable for him to hold.  And I knew what he was doing.  Here’s a picture that I took later, after he had gone to bed.

The Goldfish that Aaron won’t eat and must dispose of are those that are defective.  They have part of the cracker area missing, or have a hole in them, etc.  He will NOT eat those Goldfish.  I’ve noticed this in the past.  He’s pretty secretive about it, as if he knows this behavior is strange and so he doesn’t want to talk about it.  In fact, as he tossed the unwanted Goldfish into the empty bowl that night he would glance at me to see if I was looking.   The workings of Aaron’s mind continue to fascinate us, no matter how long we live with him. 

Deep thoughts also cross my mind, such as:    Why on earth will Aaron sometimes eat a paper towel (no joke!) but won’t eat a defective Goldfish cracker?  I’ll probably never figure that one out! 

Silverware

As you’ve seen in some of my other posts, Aaron has certain things that he does the same way every time he engages in that activity.  The way he makes his bed – remember The Order of the Covers post.  The way he cuts coupons; the way he says goodnight; the way he wears his watch; the lists he keeps – on and on.  The insistence on sameness that Asperger’s individuals exhibit is certainly a part of his life. 

This fact is definitely seen whenever Aaron eats.  It doesn’t matter what the menu is for Aaron – he will ALWAYS make sure that he has a spoon, a fork, and a knife.  Sometimes two spoons, for some reason.  I don’t care if he’s having soup – he will get up from the table, open the silverware drawer, and get a knife and a fork before he will eat the soup – with a spoon, of course. 

One day I fixed him one of his favorites – a quesadilla, which is finger food!   And notice the silverware:

Just this week he ate the last piece of Apple Pie for breakfast, as well as celery with peanut butter.  Weird, I know, but he was happy.  I gave him his pie with a fork on the plate.  Sure enough, when I went back into the kitchen he was up out of his chair, walked to the drawer, and got his knife and spoon.

He didn’t use them but he wants them there just the same.  We tell him that he doesn’t need them but it makes no difference – he will have them there by his plate.  Some things are not worth fighting.

But I sure am glad to have a dishwasher for all that silverware!

The Rolls (cont.)

This morning I had the usual rush getting out the door to take Aaron to meet his group.  I didn’t return home until nearly 1:00.  As I was cleaning the kitchen, I opened the door where our trash can is to throw something away, and there it was.  The box that held the 18 rolls.  The EMPTY box that once held the 18 rolls. 

Of course Aaron ate the remaining rolls this morning.  What did I expect?  I wondered how many there were.

Later this evening, Aaron came into the family room and said, “Mom!  This morning I ate the rolls for breakfast.”   I told him that yes, I had noticed that, and then I asked, “So how many rolls did you eat?”

And he answered, “The rest of them!!”

I had to laugh.  Aaron, I KNOW you ate the rest of them!  But just how many was that?!

“Oh, there were four,” he matter-of-factly replied.  “They were good, too, and now all the rolls are gone.” 

But he knows now how to remedy that situation with the next trip to Wal-Mart!