#20: Medicine

Last week was a challenge, but I am thankful that we all got through it so well, in spite of there being many things left unresolved.

It's a strange thing that I have the need to write in order to process my feelings, and when I get it all out, I feel very sorted and well.  But, even though I have this ability as an outlet, I find it interesting that I still sit and stew about things that are bothering me, rather than just sitting down and letting my fingers fly.  I wonder why that is, and whether I will ever get to a place in my own maturity when this isn't a struggle I have.

Last week I wrote about Lee, and some concerns about his memory.  If you missed reading about it, you can catch up here.

His memory problems, and fear of being at school, only intensified as the week continued.

On the night that I wrote my last blog post, Hugo was having a special time with him before dinner, reading one of his books to him.  This is something he does every night at bedtime, but for some reason they decided to read not long after Hugo got home from work.  They were having a great time with the book, pointing out the illustrations, and laughing at the silly parts.

A few days later, Lee and I were back in the classroom, and he ran across some books in his backpack that he had read, but had forgotten to test on.  His school participates in the AR Program (Advanced Reading), where you can read a book and take a comprehension test on it, and earn points.  This has been a challenging thing for Lee, with his short term memory loss, which is hard to watch, since this is an area of strength for him under normal circumstances.  I have had times when I've had to read the book back to him one last time before taking the test, even after reading it three times at home the night before.

When I saw this book in particular, I was rushed with confidence, since I saw just how much he and Hugo had gotten into the story.  But, when I put it in the stack of books he was going to test on, he told me he hadn't read it before.  I reminded him that he and Papi had, and I opened up the book to refresh his memory.  It was as if I was showing it to him for the first time, according to the look in his eyes.  I asked him if he remembered it, and he said he didn't.

Needless to say, it was a sad moment.  For me, and then for Hugo when I told him about it later.  How could he forget the entire book?  Have zero recollection of a story he had read, and had so much fun with?  And even worse for Hugo, to not remember a positive, happy memory with his Papi?

The night that they had read it, Lee had been acting strangely.  Very quiet, very flat emotionally.

Another key moment last week was the morning when Hugo took Lee to school.  As they approached school, Lee started to cry.  He didn't want to go to school.  At this point, there had been a lot of days of crying.  Hugo walked him through the campus courtyard, giving him a pep talk the whole time.  Then, Lee dropped the bomb.  "I don't want the shaking to happen again."

We had been so suspicious of seizure activity all week, but got no help from Lee at all.  He won't tell us if he feels strangely, unless it's really bad.  I'll suspect, and I'll ask him about it, and he will deny it, even if his hands are shaking, and his eyes are wiggling.  Sometimes he will confess, but rarely.  It is so frustrating.  It's like he knows that if he tells, it will probably mean a trip to the doctor, or to the hospital.  But Hugo's theory was that his fear of having a seizure at school in front of his peers was so great, that he caved in to the pressure and told him.  With tears.

As soon as Hugo reassured Lee, and got him to go to class, he came back home and told me what Lee had said.  Within minutes, I was on the phone with the school nurse, the school secretary, and the neurologist's office, informing everyone and getting them all to take their posts...the school people to watch for signs for Lee's seizure activity, and the nurse to get some direction from the neurologist, so that we could get some idea as to what we needed to do for Lee.  (An aside:  I had to take Adam to the doctor that morning, which is why I couldn't high-tail it back to Lee's school to observe him myself.)

I got a call back from the nurse, and she told me that the doctor didn't feel as though his memory loss was due to a medication side effect at all.  She believes that it is seizure activity, and in addition to moving his appointment from January 8 to December 1, she wants to increase his medication dosage.

Those were two very key moments in a week of many frustrations, concerns, and no small amounts of me completely freaking out, in normal form.



It wasn't a total failure, actually.

It was a good week, all in all.  I ended it with a feeling of hopefulness, a heart full of gratitude for the victories we claimed, and I was able to get a grip, so to speak, and not fall over into the Dark Side of my fear, as I watched my little boy's brain short circuit.

I came away very, very thankful for medication.  Very, very thankful for the care Lee gets at school.  I am there every single day, helping in his class.  But, I am not there every single minute of every day, and when I'm not there, I feel confident that there are good people in place who have my little boy's back.

I was waiting in the campus courtyard for the bell to ring one afternoon, and a school staff member who watches the kids in the cafeteria during lunch, came over to me and told me about how strangely Lee has been acting during lunch.  Things like not remembering whether he was supposed to buy his lunch that day, or if he brought his lunch.  Disoriented, and stressed over his own confusion.

See, this account, from a staff member who isn't even aware of recent events with Lee, came as a big help, and a huge sense of comfort for me.  It shed some light on what might be behind Lee crying at lunch time three times last week.  He's disoriented.  He can't remember the plan, and he's afraid he is going to accidentally do the wrong thing.  Like buy, when the menu for that day was for something he doesn't like.

She told me that she was able to calm him so that he remembered that he brought his lunch.  That she was able to help him figure out that he needed to go back to class to get it, as he'd forgotten to bring it to the cafeteria.  That she helped him open his chocolate pudding, and she reminded him that I would be returning to the school after lunch.

I am so thankful.

The increased dosage has been Lee's new medicine plan for a few days now, and we haven't had any moments of disorientation, or forgetfulness, or spaciness, and I am thanking God!  I'm hoping that this little tweak is all he needed, and I'm so happy that we get to see his neurologist in just over a week.  Could the need for more meds simply be due to the growth spurt he has been having?  We'll see.

Until then, as I move in and out of the challenges of life, I will continue to learn about myself, and my response to Crisis.  I'm still learning, and finding areas where I need to grow.  I'm happy that I'm functioning better through tough times, but I'd still like to see myself improve in at least being able to write about the things that are burdening me when I'm in it, rather than not being able to do it until after I've passed through it.

It's easy to take our ability to acquire our needed medications here in America.  We have it so well here.  I'm thankful for the drug Lee is taking.  That it works well, so long as he is getting the proper dosage.  That it brings a bit of normalcy to a little boy whose brain can't cooperate as we'd like, on its own.

Thank you all, my Dear Readers, for your prayer, and for your support.  I will be sure and keep you posted on the outcome of Lee's coming appointments.