Wednesday, January 22, 2014

Let's Get This Working!

Aaron has had epileptic seizures since he was in the first grade.  While I can’t say that we ever get used to seeing him have a seizure, we are used to the fact that he has seizures.  They’re all difficult to watch, though – very difficult.  For the past few years, the majority of his seizures are at night.  On a rare occasion he might have one during the day while he is napping.  We keep a baby monitor on our nightstand so that we can hear him if he seizes during the night.  We just got a new monitor with a talk button that we can push down and then talk to Aaron in his room.  At first he didn’t like this.  He said that we were spying on him.  But now he thinks that this is pretty cool, and on the occasions that I have talked to him, I can hear him chuckle.  

His seizures have been spaced weeks apart for quite a long time.  We’ve become comfortable with this level of seizure control.  But over the past two months or so, his seizures have become more frequent.  Now they have been occurring every 10 to 12 days.  This isn’t good for many reasons, and of course we wonder why there is an increase.  We recently put him on a medicine to help control some of his impulsiveness and anger outbursts.  We wouldn’t do this unless these issues – these behavior issues – were interfering with his life and happiness………and they do just that.  However, many of these drugs can also lower the seizure threshold in those already prone to having seizures.  The medicine that Aaron takes only has a .1% chance of having this side effect.  We hoped that it wouldn’t increase his seizures.  We still don’t know if it is.  We are now removing him from this medicine, will see his two specialists soon, and will have many decisions to make.

Poor Aaron.  Sometimes I feel like he’s a pawn in this great guessing game of medicine controls.  It’s a huge responsibility for us as parents, as any parent of a child with medical issues can attest.  Aaron’s health and safety and happiness are our primary concerns.  It’s just very hard to know if we’re going in the right direction to achieve those aims or not.  What helps might also hurt.  There is so much weighing to do…….so many decisions to make. 

Early this past Sunday morning I heard that awful sound on the monitor by our bed that told me Aaron was having a seizure.   It was just after 3:00 a.m.  Then again he seized almost exactly 2 hours later, and again 2 hours after that.  3:00…..5:00…….7:00.  His poor body.  Aaron’s seizures are hard, and sometimes last for close to 3 minutes.  He made his way down to the kitchen sometime after 8:00 that morning, all groggy and with a terrible headache.  I had him take his pills, but right away he laid on the couch and told me he felt sick.  I ran for the trash can and he promptly threw up all his pills.  He spent the entire rest of the day sleeping, throwing up when he was awake, and managing to keep down a little ginger ale.  Did he have a stomach virus along with the seizures?  Sometimes he throws up after seizures, but this was extreme.

At 5:20 that evening, Gary and I watched him have another seizure.  Afterwards he was totally limp, and later when he awakened some, he couldn’t speak.  That’s always a hard thing to see.  At 10:00 he took his night pills, threw them all up, and later was able to finally keep a second set of pills down.  And he slept all night…………no more seizures and no more throwing up.  I was amazed at all that sleeping! 

On Monday morning I went into his room several times to check on him.  Finally, I made some noise and he woke up, giving me an Aaron smile as he stretched his arms and legs.  He made it out of bed, and I had him scoot down the stairs on his bottom while Gary stayed in front of him to catch him if he fell.  He was just too unstable to walk down a flight of stairs.  He was much more coherent and alert, though still slow.  I knew he was hungry after not eating for 36 hours.  He said that some applesauce sounded good, so I fixed him some and watched him as he slowly ate……..and stared……..and leaned over………..and ate some more.  Feeling that he was tired, I told him that he could take a break and have some more applesauce later.  “How ‘bout I do it now?” he asked.  So hungry Aaron ate more applesauce, of course, and then drank coffee.  He was feeling better by the minute!

He had a good day……..slow and quiet, but very good compared to the day before.  That evening I asked him if he wanted a haircut and he quickly agreed.  I know it felt great to him to get out of the house, and he always loves getting a hair and goatee trim.  Then we walked down to Papa Murphy’s and got his favorite pizza for supper.  Later, he very slowly ate his piece of pizza.  I commented to Gary that I could tell Aaron didn’t have an appetite because of how slowly he was eating and because he had said he just wanted one piece of pizza…….unheard of for Aaron!  Very softly he said, “I have an appetite.”  And I assured him that it was fine to not want to eat much.  Then he reached for another piece of pizza, which I knew he didn’t want, as he repeated, “I have an appetite.”  It’s OK, Aaron.  You don’t have to eat.  And later, as he was settled in his chair to watch Wheel of Fortune and I was cleaning the kitchen, out-of-the-blue he said, “Mom!  I have an appetite.” 

Yes, Aaron, we’ve established that.  And I’ll know next time not to accuse him of losing his appetite!

He’s been doing fine yesterday and today.  He went to his day group both days.  He’s still very slow, almost like he’s in a daze.  He doesn’t have his usual bounce and hasn’t been talking much.  As I’ve said before, this quietness is a side of Aaron that is always concerning. 

Last week he came home as the proud owner of a new Whoopie Cushion.  I believe one of his day staff won it at All Star Sports and gave it to Aaron.  He hasn’t wanted to open it or to use it.  Does he remember the last time he had one?  We all laughed and laughed together as we each sat on it, including Aaron.  But then Aaron put it on the floor and from a standing position he sat on it with full force.  It exploded!  And we all nearly died from laughter.  Maybe Aaron is now cautious about his Whoopie Cushions after such an explosive event.

Last night as I helped Aaron get his bed ready, he reached over on his bookshelf and held up the still packaged Whoopie Cushion.  “Mom, I hope we don’t get this working!” he said with a smile on his face.  No amount of talking on my part could convince him to get the Whoopie Cushion working.  He tucked it back onto his bookshelf and headed for bed.

Who can tell what Aaron is sometimes thinking?  And I’ve been thinking about that statement today.  I DO hope that we get Aaron and his body working again the way it should………the way that is safe and healthy for him.  I also hope that his fun personality comes back, not in an explosive way but in the amazing way that is so Aaron.  His unique view of life……..his funny comments………his amazing insights.  All of these traits are what make Aaron such an interesting, and sometimes frustrating, person to live with. 

He just came home from his group, immediately coming downstairs to find me.  “Mom!  Barb said I made a new friend today.”  Then he told me about J., whom he hasn’t gotten along with too well.  “J. had some silly putty and he put it over his mouth.  Then it made farting noises!”  Aaron was laughing as he told me, and apparently was laughing a lot at J. as he did this….and J. was laughing as well.  “Those farting noises were funny!”  Aaron said.

I think Aaron’s coming back.  I’ll take it…….I think. 


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