The Spa Day is Over, and Reality Lives On

Yesterday my mom, sisters, and I spent the day in full indulgence, basking in mud, mineral baths, and steam rooms while our husbands and children held down our forts from morning until night.  We had planned this day for months, and considering it's the first time we have done anything like this together, it was long over due.

Here is a picture of us laying out by the pool:

Here is another picture of us, this time covered in mud from head to toe:

Here is a great shot of us detoxing in a mineral bath:

Right.  Not a picture to be had.  We locked away our phones, never even took our cameras, and the only images captured from the day are locked in our hearts, ensuring that there is zero photographic evidence of any of us waltzing around Glen Ivy without a stitch of make-up on our faces.

It was a beautiful day.  A wonderful time to visit, relax, and enjoy each other.  I so love my mom and sisters.  Thank you, Hugo, for the gift.

This morning I was back on the job.  Lee had minimum day, so he got out early from school.  I volunteer in his class every Thursday, so I went in at 10:00 like usual, and worked in his class until school dismissed.

He greeted me by sharing a war wound on his side.  He slipped and fell in the bathroom at recess.  As he shared his experience, he said that his legs were shaky when it happened.  Were they shaky before he fell, making him fall?  Or did he fall, and then get shaky legs?  He isn't sure.  He was very confused as I asked him.

I got permission from his teacher to ask a classmate who was with Lee when the accident occurred.  The boy didn't see his actual fall, but he reported what he did see.  I asked whether Lee lay on the floor like he was "asleep."  He said he didn't.  I asked whether Lee got up quickly after he fell.  He said he did.  Sounded un-seizure-like.

But, Lee's teacher then shared what she described as an "odd moment," earlier in the morning during P.E., when Lee stood motionless in spite of a teacher instructing him to participate in the exercise they were doing at the time.  Three times, she tried to get his attention, with no success.  Finally, he was asked to sit in time-out.

His teacher heard about what had happened, so she went to Lee to question him.  She found him disoriented and confused, and sad because he had gotten into trouble. She did not feel that Lee had been defiant with the other teacher.

I had planned on having him ride his scooter to the post office with me after school, while I rode Tessa's bike.  It's about a 2 mile ride from our house.

He did OK.  He needed to stop and rest a lot, but temperatures hovered in the upper-80s, to low 90s.  I noticed that he was slow to respond to my instructions when I'd give them.  This made me very, very nervous, as traffic on Glendora Avenue travels at about 40 miles per hour.   We were on a sidewalk, but still.

Honestly, he did very well, was very coordinated, and he followed every rule.  I was so divided.  I was nervous on the inside, fearing he'd lose control and stumble out into oncoming traffic.  But, on the outside, I was so proud, watching him move with grace and sheer joy.

We stopped and got ice cream.

And he had to stop and sit under the 210 freeway on our way to the post office, as well as on the way back home.

He loves doing this, and honestly I can understand why he would.  It sounds echoey and strange, you get a sense of great power racing overhead, and it's quite cool on a hot, late summer day.  But, all I could thing of was this:  What if an earthquake hit right now, and the freeway collapsed?  Oh, such is the life for a mom with anxiety issues.

I wonder all the time about my choices with Lee.  Is it OK to allow him to do things that are risky like scootering on a day when he's spacey, and confused?  And as I muse that thought, I wonder if it is OK to not let him do things that are risky like scootering on a day when he's spacey, and confused.  Is it my job to protect and shield him, or is it my job to allow him to live life to the fullest in spite of having a seizure disorder?

We came home, and he rested while watching The Return of the King.  It's now time to tackle homework.  I'm not at the spa anymore, but I am home, with my family, and happy to soak in every moment as though each moment were precious.  Because each moment with these people is precious.

Which MRI is Right? Are Lee's Headaches a Clue?

The nurse at the neurosurgeon's office listened to me yesterday--the first time I've really been listened to in a week and a half since Lee's pain began.  She said she would have the doctor look at Lee's chart, as well as tell him about the things that have been happening to him recently:

• Severe Head/Ear/Cheek/Mouth Pain
• Skin sensitivity on his head and face
• Two episodes of his line of vision turning upside down
• Throbbing Headaches as recently as yesterday

I also told her that I met with Lee's teacher Friday.  She has taught for 30 years, and says that it is typical for 7 year-old little boys to be forgetful, flighty, spacey, and disorganized.  But, if she were to lump all of her typical forgetful, flighty, spacey, and disorganized 7 year-old little boys, Lee would not fit in that group as typical.  His forgetfulness, spaciness, etc. is far more extreme.  He is quiet and kind--so much so that she strategically has him sitting beside a sensitive, shy girl who is safe with Lee.  But, he doesn't complete his classwork.

Lee explains it this way.  That his brain goes to sleep sometimes listening to music, or replaying movies in his head.

Anyway, not even 5 minutes after the nurse and I hung up, I received a phone call from the Physician's Assistant.  He had Lee's chart, and was reviewing his MRI from 2010.  He observed Lee's 10ml Chiari Malformation.  In order to be diagnosed as having a Chiari Malformation, it has to be 5ml or more.  The point being this:  It appeared significantly enough on the 2010 MRI, for the 2012 MRI that showed no Chiari to be suspect.  It would be irresponsible to not do a third MRI.  Thank you!!!!!!  

It was partially for this reason that we fired the last Neurologist.  She said, point blank, that Children's Hospital LA, the place where Lee received his MRI in 2012, is a far superior hospital compared to the smaller Community Hospital where he had his MRI in 2010.  Well, duh.  But because of the superiority of Children's LA, she deemed the 2010 community hospital MRI to be in error.  End of story.

The P.A. today said that since the 2010 community hospital MRI showed such a significant presence of the Chiari, we have to do a third MRI, and this time with contrast.

He went on to further explain that Neurosurgeons are far better equipped to determine whether there is a Chiari present, which is what Lee's new Neurologist said.  

So, this is the deal.  Lee will see the Neurosurgeon on October 2, the Neurosurgeon will order an MRI with contrast at Children's LA.  Then, we will go back to the Neurosurgeon so that he can tell us what he found.  So, hopefully we will have answers soon. 

Nothing about this process is quick.  But, at least we're getting somewhere. 

Still Waiting...

Lee's Mysterious Head Pain

His First Name is Lee and We Have an Update

In response to so many of you asking about Lee's condition, I want to offer a quick update.

His episodes of pain have mercifully all but ended.  He continued to have severe pain wake him through last weekend, and he continued to complain of his mouth/face/head hurting at the beginning of this week, but nothing seems to be hurting as of yesterday.

There is a new symptom that developed yesterday that has us concerned.  He was watching a movie after school when the room, according to his line of vision, turned upside down.  It righted itself within seconds, but later during homework it happened again.

No headache.  No ringing in the ears.  No speech or language hiccups.  He was otherwise fine.

I have been in regular contact with his teacher.  What a comfort she is to us.  She is watching out for him, and she is making herself available to help in any way she can.  Today after school, we are going to meet so that we can discuss anything that might concern her about Lee, so that I can take her observations to the Neurosurgeon.

Which brings me to the Neurosurgeon.  No appointment has been made yet.  Daily, for over a week, I have been on the phone between the Neurologist's office, and the Neurosurgeon's office, trying to get everything from one office to the other so that the Neurosurgeon's office can schedule an appointment for Lee to be seen.

As of just yesterday afternoon, we FINALLY got most everything where it needed to be.  At least enough was at the Neurosurgeon's office so that he can review the films from Lee's 2 previous MRI and CT Scans, so that he can determine whether Lee's need to see him is critical, or can wait...

I brought up again the severe head pain, wanting that to be factored in in the decision process.  I was reassured that it would be taken into consideration.

Until then, I pace the floor, battle the impatience in my spirit, and fight as much as I feel I need to fight for my little boy.  In short, this whole thing kind of sucks.  And I've been kind of emotional lately.

I am headed to his school to volunteer.  Partly because I'm a regular volunteer there, and it's what I do, but partly because I like to stay close sometimes, just in case.  

Think I'll add "Depression/Anxiety," to my list of labels for this article.

His First Name is Lee and We Have an Update

So if you thought I was cranky yesterday, hold on to your hat.  And you might want to duck.

Lee had a fabulous night sleep.  But, when he woke up this morning, his eyes were still dull with pain, and he complained about the continuing presence of his head pain.

My ex-husband agreed to take Lee and me to see Lee's Pediatrician, if I could get him an appointment.  They told us to be there at 1:00.

The doctor saw the same red ear as the ER doctor, but she said it was very mild, not an infection, and nothing that would cause him to suffer the pain that he has had since 11:30 Wednesday night.  She did a series of basic neurological tests, and he passed.  She recommended Lee see his dentist.

The dentist was able to see him at 3:00.  She did x-rays, and an examination, but found nothing that would cause pain.  No decay.  Healthy tissue.

The next step will be the Neurosurgeon.  

I'm feeling quite disappointed.  An ear infection, or molar/gum issues could have been a simple cause, with an easy fix.  But, at this point, I can't think of any other easy fixes.

It's hard to push for help with something none of the doctors have seen, except for the ER doctor, and he dismissed the whole thing as being caused by ear pain in an ear that he himself had said wasn't infected.  As Lee's mom, I'm pushing for something Lee's entire family saw.  His pain was severe.  So bad, in fact, that as I was getting dressed so that we could take him to the ER, I contemplated calling 911.  I've never considered calling 911 over the pain of an ear infection.  And let me say again:  Lee doesn't have an ear infection.  The ER doctor said it yesterday, and the Pediatrician said it today.

He had to take pain medicine this morning, but he hasn't since.  When he touches his teeth, cheek, or ear it causes pain, and even makes his head hurt.  But today, so long as he doesn't do those things, he has been able to function fine.  You know the old joke, "Doctor, doctor, it hurts when I do this."  Then the doctor replies, "Well, don't do this, then!"

He's a little bit on the quiet side, but he's in a good mood.  He did, after all, get to miss 2 days of school.

Please pray for him, and for answers, and for solutions.  Easy solutions.  Thank you.

Lee's Mysterious Head Pain

It's been a while since I've posted anything about some of the medical challenges Lee faces.

He had seizures before he was born. Toward the end of my pregnancy, there were times when the slow, rolling movement of a baby growing too big for his Mama's tummy were interrupted by rapid periods of shaking. It felt like Bambi's friend Thumper was in there, thumpin'. I told my doctor, but it never happened when I was hooked up to a monitor.

He had his first recorded seizure in the presence of the RN assigned to us during his second night after being born. We were due to go home the next morning. Instead, we were flown by helicopter to a bigger hospital with a NICU, where he stayed for 6 days.  Nothing significant was found to cause the seizure.

He didn't have another seizure until he was 5.  He was sitting up in bed watching Phineas and Ferb, and then suddenly grabbed the side of his head and started crying.  Then he fell unconscious.  When he came to, he was clammy, his pulse was rapid, he was dazed, and very disoriented.  He was taken by ambulance to the ER.

For about 4 hours he was emotionally flat, still, and lethargic.  Sleepy.

The hospital ordered an MRI and CT Scan.  They discovered that Lee has a Chiari Malformation.  His Neurologist explained that we would need to limit his activity from anything that might jar his neck.  Roller coaster rides.  Flips on the trampoline.  This has brought no small amount of angst to Hugo and me.  Lee is a typical 7 year-old boy.  Active.

I have written about all of this before.

The Chiari Malformation, and the seizure activity are completely separate, according to most of the Neurologists Lee has seen.  But, the pain he has had in his head has been explained as being caused by the Chiari, and some of the painful episodes have brought on seizure activity.  So, though they're not related, they do play against each other.  They're both affecting his brain.

Last winter, Lee had a new barrage of tests, and the results came back saying that no Chiari Malformation was seen.  You don't grow out of these.  So either Test #1 was wrong, or Test #2 was wrong.  So, I asked for a Test #3.  The Neurologist didn't want to do it.  So we switched Neurologists.

Now, this is where is gets, well, we'll call it funny.  Please note that I'm not in a good mood right now, so I'm not laughing.  But, on a different day, I can see that there might be some humor here.

Lee's last name happens to be a popular girls' first name, and the name "Lee," is more commonly a last name.  The result is that he is always mistaken as being a girl with the last name Lee.

I always.  Always.  Have to correct this.

We have an HMO.  We're assigned the doctors we see by the insurance company.  When I requested a switch of doctors, some clerk saw Lee's name and since they naturally assumed his last name was Lee, they further assumed he is Asian, and is an immigrant from another country.

We walked into the new Neurologist's office, and were the only Caucasians in the building.  Their sign-in forms weren't even in English.

Dr. Kim entered the room, took one look at us, and you could see the look of surprise.  He does speak English, kind of, but we have to use our hands a lot, and I have to speak slowly.  Very slowly.  And I have to repeat myself a lot.  A lot.  And I have to ask him to repeat himself.  He doesn't hesitate to show his frustration.

So, we pushed forward, and I explained my concerns.  That there was a Chiari Malformation.  With lots of physical restrictions.  Then, there wasn't a Chiari Malformation.  And as badly as we want Test #2 to be the correct test, we can't be sure that it is.  What if it is the wrong one?  What if we lift all of Lee's restrictions, only to discover tragically that we shouldn't have?

So, he told me that Lee needs to go to a specialist.  Ummm.  But, isn't a Neurologist a specialist?  He said he'd rather a Neurosurgeon look at the case and decide whether another CT Scan or MRI needs to be ordered.  That he didn't feel qualified.  Oh.  OK.

My faith in modern medicine lies somewhere between total awe at all that we have accomplished and can do, and a belief that far too many doctors are kin to the Banana Brothers Outfit.  That day, I was leaning toward the Banana Brothers theory.

Lee has been quiet.  No seizure activity, no strange pain episodes, and nothing abnormal at all for months.

Last night at 11:30 he woke up crying.  His teeth hurt.

His last dentist visit was about 4 months ago.  No cavities.  I looked inside his mouth.  No redness in the gums, no visible problems with his tooth.  I gave him Motrin and put Anbesol on his tooth.  A half hour later, he awoke again.  And again a half hour after that.  I brought him to my room to sleep the rest of the night.  He woke up whimpering, or crying every 30-40 minutes.

At around 4:15, he woke up again, crying a little more.  I got up and held him.  He was in intense pain, and there was nothing I could do to make it better.  I needed to go to the bathroom excuse myself, and while I stepped away, he grabbed his head, crying even harder, saying his head hurt.  I looked at Hugo and we decided he needed to go to the ER.

As I dressed, Hugo helped Lee get dressed, and Lee noticed that I had laid out soft basketball shorts, and a home t-shirt.  He said, "These aren't the clothes I'm supposed to wear."  It encouraged me that he caught that.  We told him that we wanted him to wear comfortable clothes.

Unfortunately, our local ER doctor also belongs to the Banana Brother Family.  He did what so many ER doctors do.  He processed the patient through.  I decided that at this point in my life, I need to just realize that the ER doctor isn't there to diagnose, or really treat a condition.   They're there to assess whether there is an emergency that needs emergency attention.  In this case, all Lee needed was pain medication, and a recommendation to follow up with his own doctor.

The doctor did see a pink left ear, but without a fever, was reluctant to prescribe an antibiotic.  I'm fine with that, actually.

The moral of this story here is that Mom can't take any time off.  I was tired from pushing for answers on Lee's condition, and since he's been quiet for all these months, I didn't continue to push to get him in to see the Neuro-Surgeon sooner.  And as a result, when this happened today, I assumed the worst.

It's looking more and more like it's a simple ear issue.  Six hours after his pain medicine dose in the ER, the pain returned.  Tessa, Adam, and I were able to get him to describe the location of his pain.  It hurts in his upper molars.  His lower molars.  His jaw.  His cheek.  And his ear.  Since the ER doctor saw a pink ear, I'm leaning on that as being the culprit.

In the meantime, I've contacted the Neurosurgeon's office to schedule an appointment.  They don't have Lee's Authorization Approval Letter, in spite of the fact that the new Neurologist's office faxed it to them 6 weeks ago.

And the former Neurologist hasn't sent Lee's records over to the new Neurologist.  So I called.  The receptionist told me that they need a new signed release from me.  That I can't fax it to them.  Or send it to them. That I have to physically take it to them.  I challenged this.

They asked for my son's name.  I told them.  First name, Lee, and then I gave them his last name.  They said his name back to me, with his first and last names switched.  I said, "No, his first name is Lee."  She put me on hold.  A new lady got on the phone.  She said his name backwards.  I said, "No, his first name is Lee."

She asked for his date of birth.  I gave it.  She put me on hold.  Came back.  Said she found his file.  And then asked for the fax number.  They're faxing it to the new Neurologist.  Without my signed release.  Whatevs.  If it gets the job done, right?  I can only hope that the doctor's assessment of me as being "INTENSE," was written on his chart, and that was what made them decide to get both Lee, and his intense Mom, the heck out of there.  Give us over to the new guy.

I'm remembering now why I needed a break from all of this.

But, then I see my little one in pain, and I remember why it is that a Mom's job is never done.  That there is never any clocking out, so to speak.  It's time to get busy.  And unleash my intensity on a new batch of medical professionals.

Shape Shifting

This has been a summer full of kids' comings and goings.  We haven't had all 5 kids sleeping under the same roof at the same time in about a month, and even then it's only been a few days this whole summer.  As I count, I think we've only had 9 days with 7 occupied beds.  No, wait.  Six occupied beds.  Hugo and I share, don't we.  But, you get the point.  Gone are the days of old when I had all my babies regularly tucked in a row.

In my last post, I wrote about how I had spent many years without much of an identity outside my family.  Gone are those days, too.

This week, Lee has been with his dad.  This is a first for him.  He has never had one-on-one time with his dad like this.  Ever.  He was so excited for this week, and so ready to do this.  He was a little nervous, too, but heck.  So was I.

Even with my life being all chuck full of purpose, and my schedule filling up at an overwhelming rate at times, even with all the work I have to do this week, I still crave the simplicity of having my little boy on my lap.  Tucking him in at night.  Watching him jump on the trampoline.  Listening to him hum.

And I reserve the right to not like this thing at all.  This thing where he, along with his siblings, are subjected to the emotional torment of always having a parent they miss.  This isn't natural, it isn't how parenthood was designed, but yet it's where we are.

So, I accept it.  I can't change it.  And I trudge along, as best I can.  We trudge along, as best we can.

This week, I'm working on developing major changes to this blog, and expanding it in such a way as to make future ginormous changes possible.  Changes in the direction I've envisioned for this venture for a few years now.  That is exciting.

This week I am also working on an article for Life in L.A. that is centered around events taking place at the world-famous Grauman's Chinese Theater.  This has been fun.  This morning, I interviewed Alwyn Hight Kushner, Producer, and Director of Operations at Grauman's Chinese Theater.  Fascinating lady. Her father is Don Kushner, producer of such films as both Tron movies, and the Charlize Theron movie, Monster.

This week I am reading a book for Life in L.A., and will be writing a review.  The book was written by a woman in her 80's!  I'm only on page 6, but I can tell already that I'm going to like the book.  I like her style.  And I like having to read a book, and calling it work.

Tomorrow I will post an article in this blog that is centered around the death of one of Abi's school friends.  The piece will be about our kids who are left behind to grieve, and how we as parents can help them through this tragedy.  With this article, I have gathered statements and stories from 3 separate people.  This isn't something I usually do for a blog post, so this has been a challenging departure.  I went all local journalist on myself.  I kind of liked it.

Lee will be home Friday, and Hugo and I are counting the hours.  In the meantime, we have work to do, right?  But, sharing my angst with my readers always helps.  Thank you for your part in my healing and recovery.  I love you so much.

Lee's Journey from the Stars to Fellowship!

We're going to call this the summer of the Fellowship.

It all started when I was sent by Life in L.A. to see and write a review of Fellowship! the Musical, the hysterically funny Fellowship of the Ring parody last month.  We were invited back to see the show again by the lead producer after my review was published, and we took the kids.

Peter Allen Vogt, played Sam, and Abi recognized him from her Hannah Montana days as a little girl.  Sorry about the smudge across his belly.  I touched the camera lens.  Gah!  I SUCK!

Seeing the show together will be a summer highlight.  We're so sad that the show has closed already.  We're rooting for another LA venue to pick it up.  We laughed hard during the performance, and we have laughed together ever since, as we sing the songs or remember the lines.  Even Lee.

He was in the back yard jumping on the trampoline, and I could hear him singing one of the songs from the show.  The main lyrics are, "The Nazgul.  Black Riders.  The Ringwraiths.  The Same thing."  Of course, I couldn't get to my camera fast enough, so we had to recreate it.

Lee was so into the play, that we thought we should bring out the extended DVD version of The Fellowship of the Ring movie, and give 'er a spin.  To the amazement of the rest of us, Hugo had only seen the ring movies once, years ago, and Lee was too young to watch them before.

It was a total hit.  Especially for Lee.  He has watched it over, and over, and over again.  Now, when he is playing, he's humming Howard Shore's Fellowship, or Shire themes, over John Williams' Dual of the Fates, or Imperial March themes from Star Wars.

Before, he would ask, "Why did Anakin decide to join the Dark Side?"  Now, he's asking, "Why would Saruman decide to join Sauron?"  I suppose it's the same compromise for greed theme, either way, and a good life lesson to discuss, whether we're in the stars, or Middle Earth.

While I painted my bedroom, he watched the Fellowship of the Ring Special Features.  There aren't that many 7 year-olds who would want to sit through the cast interviews or video coverage of the creation of Hobbit feet, but Lee took it all in.  I swear, he's going to be a film maker when he grows up.

He had long ago decided that he was going to dress up as Darth Maul for Halloween.  In fact, Hugo bought him a double light saber, and Darth Maul mask.  Well the Sith Lord can move over.  As of a couple of weeks ago, Lee has declared that he wants to be a Ringwraith, instead.  Guess we need to buy lots, and lots of black fabric, and get to sewing.

Why do I see treks to Comic-Con in our future?!

Forgetting Lee's Meds

Lee has seizures.  He had them before he was born, and he had one in the presence of an RN at the hospital two days after he was born.  He was born in a small town Nebraska hospital, so we were transported by helicopter to a larger hospital that had a NICU.  He was tested, scanned, poked, and prodded for nearly a week, but no explanation could be found to make the seizures make sense.  He was sent home, and the seizures were quiet, like a dormant volcano.

They awoke.  He had his first of many eruptions when he was 5 1/2.  He was put on Lamictal, and for a period of about a year, his neurologist slowly upped the dosage until the seizures were quiet again.  He hasn't had a seizure, or at least a bad one, since last December.  I had forgotten to give him a dose of his medicine.

He takes his medication twice a day.  I have an alert on my phone.  I have an additional alarm on my phone.  I have his medicine pre-measured in dosage cups.  Six pills a day.  Three in the morning, and three at night.

Even with all of the alarms, and even with the dosage cups, and even with this having been a very long and established twice-daily routine, I still forget to give him a dose.  I still forget.  I still forget.

And I hate myself for forgetting.  It isn't all the time.  I'd say, maybe five times this last year?  Maybe?  But even though the flip side of that means I have remembered 725 times, I hate myself for the 5 times I forgot.  Especially when a seizure could occur as a result.

One of those times was a couple of weeks before school ended.  Lee would have gotten Perfect Attendance for the trimester, but he felt oddly when he woke up, because I had discovered 6 pills in his medicine cup the night before.  His neurologist told us emphatically, that if we ever miss a dose, to give it to him when we discover the mistake, along with the next dose due.  So I gave him all 6 pills at bedtime.  And I kept him home the next day for observation because he was weak when he woke up.

Last night I got his meds out to give him a dose, and I discovered the dreaded 6 pills sitting in the Sunday section.  My heart sank.  I had forgotten his morning dose.  We had an unusual Sunday, and my routine was off a bit.  I gave them all to him last night.  This morning he has been very sedate, very quiet, and very sleepy.  I can see it in his eyes.  One is kind of drooping, and he has to work very hard at not letting them wiggle back and forth.  He spent the morning zoning.  He is in his room taking a nap, which is highly unlike him.

He depends on his parents to care for him, and I hate it when I screw up.  I text his dad when Lee is at his house, to remind him to give him his medicine.  I know how easy it is to mess up.

I am so thankful for medicines that can keep my little one safe, and I am so happy that we live in a country where these medications are so available.  I am so thankful that we found the right drug for him.  One with only minor side effects, and one that does its job well.

And I am thankful that Lee has parents who take this seriously, and that we do administer the medication as needed almost all of the time.  But, when we goof, it weighs heavily.

We live with the stress of having a child with a seizure disorder every day.  Thankfully, things aren't nearly as bad as they could be, but still, we have it hanging over us.  Every.  Single.  Day.  Twice a day, if we're doing our job right.

There are worse things, yes.  There always are.  But, learning to live with the worse things that plague us, whatever they may be, is a life battle we all have to fight.  Tomorrow, I will choose to focus on the good things about his situation.  That he's stable, that he has the meds, that I do remember most of the time to give them to him.  That it could be worse.  But, for today, I can't.  Today I am thinking about how badly I feel, because seeing the consequence of my mistake really sucks.  My poor little boy.

It's so many things like this that add up and grow into big stresses, and I have to watch myself closely, to make sure that I don't take the guilt too far, and go to deep, dark places with it.  Feeling badly is appropriate, but I do have to dust myself off and carry on.

If today is like most of the days that this has happened, Lee will be fine within a few hours.  He will have a good day, and he will hum Darth Maul's theme while he plays.  He will ask me a bilizzion times if it's 4:00 yet, because that's when he's expecting his friends, Thomas and Maggie, to arrive.  He will eat his yogurt, nibble on his grapes, and jump on the trampoline.  

And he will get his three pills tonight, as scheduled, no matter what our evening brings.

A Day with Lee at Cabrillo Aquarium

It was a beautiful day for a field trip to the Cabrillo Aquarium in San Pedro.  Excitement levels were high amongst the 1st graders who got to enjoy a day away from school, as we waited to enter the class time on the beach.  Can you see Lee?  He's the one facing us to the right of the aquarium staff member.  It was here that we were told that there will be no cell phone texting or talking during class.

All of the 1st graders from Lee's school got to participate in the field trip.  That is roughly 50-60 six and seven year-olds.  So, imagine that many kids in a class on the beach, being told not to play with the sand they're sitting in.  There were doing pretty well here.  This was their first of about 6 classes.  I won't include the pictures of the sand-play offenders, so as to not incriminate the guilty.

Lee was given the honor of being a volunteer helper because when the aquarium instructor asked which whale was pictured, Lee shouted out, "Blue Whale!"  He paid attention in the whale books we read this year.  Here, he was demonstrating something completely adorable about the whale.  Or, he was being completely adorable demonstrating something about the whale.  Either way, my mama-heart was aflutter.

We learned about grunions.  The kids were given a glass jar with grunion eggs, sand, and water.  They were able to swish them around for a few minutes, until the eggs hatched, and little newborn grunion swam around the jar!  Completely cool.  Except for the part when the little boy got a sticky grunion egg stuck to his hand.  He kind of freaked.  And I kind of freaked, making sure that the ity bity pre-hatched baby made it back to the safety of the jar.

Moving 50-60 kids from class to class is daunting.  To borrow a phrase Hugo has been known to use, it was like herding cats.  We worked up an appetite, and took a lunch break on the grass.  Lee enjoyed animal cookies bearing the name of his great-great-great-great grandfather, P.T. Barnum.  He was looking out at a pelican on the water.  That's my boy.  Keeping his eyes on our Pacific Ocean.

After lunch, we went inside to the aquarium.  I would have taken more pictures, but even with our 2 to 1 adult to student ratio, our hands were full, keeping our kids where we could see them, with a dozen other schools trying to do the same.  It was pandemonium.  Lee had a steady hand, though, and he was able to snap this picture of an ocean animal in a small tank.  He said it was creepy, and that it made him have goosebumps.  He just told me that.  He walked up to edit me as I write.

It was a great day.  But for me, any day is great when I get to see the ocean, even if it is in the form of a harbor.  But, clearly the best part of the day was getting to spend time, and make memories with, my favorite little boy in the world.  

Starring Lee as Darth Maul

Lee was a Star Wars late bloomer.  For his entire pre-school and Kindergarten years, his boyhood favorite things involved super heroes.  Batman, Superman, Spiderman...any crusader, caped or otherwise, captured his imagination.  Batman backpacks, Batman and The Joker at his 6th Birthday Party, countless Happy Meals whenever super heroes were in the theaters, because Happy Meals = cool super hero toys.

His cousins Troy and Elijah, on the other hand, were very much into Star Wars.  Lee liked Star Wars, but The Millennium Falcon just didn't get his heart racing as much as The Batmobile.

When Lee was 5, Hugo took him for his first of what would be many visits to Frank and Son's, a weekly nerd fest where various collectible peddlers sell their goods in a warehouse.  Matchbox Cars, Barbie's, comic books, video gaming stuff, action figures of every kind.  It's like a swap meet for the Star Trek Convention type.  It was Star Wars day when Hugo first took him, and they had people prancing around in Star Wars costume, which caught the imagination of Lee.  At one point they put on a Star Wars skit, and Hugo recorded it on his iPhone while Lee sat on his shoulders.  It is still one of Lee's favorite things to watch.  I really think that it was this exposure to Star Wars excitement that really began Lee's interest.

It was confirmed last summer, when we were back-to-school shopping, and Lee chose a Darth Vader backpack, over Batman.  And when he turned 7 in December, he chose a Star Wars themed birthday party.  He got a lot of Star Wars toys, and *a lot* of Star Wars clothing, and as fast as you could say Storm Trooper, he was hooked.

We had the original three Star Wars episodes on DVD, but not the newer three.  Hugo and I happened to stumble upon them at a movie store, no wait.  The story goes this way:  The Easter Bunny realized, the week after Easter, that he forgot to give Lee the three Star Wars movies he'd intended to include with the Easter baskets.  He secretly gave them to Papi a week late, so he could get them to Lee.  Or so Hugo told Lee.  I told Lee that I'd never heard of the Easter Bunny doing anything like that before.  And that I was completely amazed that Papi was actually able to meet the real Easter Bunny in person, like that.  I never have.  We keep all of our contact on the QT.  Blocked cell phone calls from his helpers, for candy suggestions.

Anyway, Lee now had all 6 of the Star Wars movies, thus issuing in a brand new era of passion for all things Star Wars, including countless questions.  "Why did Qui-Gon Jinn think Anakin was special?" "Why didn't the Council trust Anakin?" "Why are Darth Maul's teeth so ugly?" "Why were Anakin and his mom slaves?" "Why is the Emperor's skin so gray and wrinkly?" "Why did Anakin choose the Dark Side?"  In the car, at bedtime, on bike rides, during dinner.  So many questions.

He hums the Star Wars music all the time.  If he's doing homework, playing, jumping on the trampoline, it's either the Imperial March (Darth Vader's Theme), or Duel of the Fates (Darth Maul's theme), or the standard theme being hummed.  He's actually really gotten into John Williams' music as a whole through his love of Star Wars.

Lately, Darth Maul has been his obsession, not because Lee leans more toward the Dark Side, but because Darth Maul is badass.  He enjoys watching The Making Of feature on the Episode I DVD, watching the actor who plays Darth Maul train with Liam Neeson, and Ewan McGregor.

It's Saturday.  Frank and Sons is open.  Hugo and Lee devised a plan where Hugo would paint Lee's face to look like Darth Maul, and they would go to Frank and Sons, in full nerd form, in search of a double light saber.  Lee got all painted, he counted his money, and off they went.  I captured it with some pictures:

Please ignore the pink walls.  Yes, we still need to paint.

It gets kind of hot at Frank and Sons, so I hear, so we had to creatively dress our little Darth Maul in a cooler version of a make-shift costume.  Black Star Wars t-shirt, black and red basketball shorts, black and red flips, brought together with a black scarf on the head, and the black and red cape Grammie made each of the boy cousins for dress-up.

Pretty impressive, right?  Hugo doesn't know this, but he is available for hire, for any and all of your costume make-up needs.  

I like it how Lee can take full advantage of his 1st grade teeth (front permanent tooth only partially in), in an attempt to replicate the Sith's menacing grin.

There's still a nice boy under all that paint.

Back to Earth, and counting his money with Papi, and Abi (fresh out of the shower, with wet hair).

Hugo told me that even as they walked through the parking lot, people commented on Lee's look.  He got a lot of positive comments, and thumbs-up.  Inside, everyone who passed them noticed Lee, and kids were in awe.  Hugo was loving it.  Lee was too, but then suddenly, not so much.  He wanted the paint off.  So, it was into the nearest bathroom with a hand soap and paper towel spit shine.

They didn't find the double light saber at Frank and Sons, but good ole Target came through.

The day was made complete with a lunch out at McDonald's.  The Happy Meal toy was lame, but no complaints.  A day out with Papi, and a double light saber are all he needed today.  Come to think of it, I think it's what they both needed.

The Seizures Still Come, With a Process that Makes Me Want to Cuss

Lee had a set of seizures Sunday night at a family Christmas party.  I found him on the floor of the garage he had been playing in, on his side as though he was merely asleep.  I called out to him as I ran to his side, and he remained unresponsive.  Family filled the room, and he appeared to "snap out of it," before rolling to his tummy.  Shaking ensued.  His muscles completely went limp leaving his legs and arms flat to the floor, with the exception of his hands which were curled upward toward his wrists, and his feet which were pointed inward.

I carried him inside the house and decided to take him to the ER.  We were close to the hospital where his neurologist is licensed, and we had been expecting to have an EEG and MRI there within the next few weeks.

He felt as though he was going to vomit, and then went into a second seizure.  Completely limp, no muscle tone, with hands curled again.  I asked for someone to call 911.  Hugo took him to the house, and laid him on a bed.  He was verbally responsive, but with eyelids closed, I could see his eyes moving from right to left, and back again, again and again.  His limbs were limp, his feet turned to the side so far, that under normal circumstances, it would have hurt the muscles in his legs.

He was taken to Miller Children's Hospital in Long Beach.  His vitals were strong enough that they released him with orders to follow up with his neurologist.

The reason why I opted to take him to the ER was twofold.  First, this seizure was amongst his most strong ones, and the fact that he went into a second one was abnormal for him, and counsel from his neurologists has been to seek immediate attention when the seizures are stronger, or different.  Secondly, I'd been advised by Lee's pediatrician to speed the approval process on the already-needed MRI and EEG by taking him to the ER in the event of a seizure.  Her thinking being that the hospital would order those tests in an emergency setting.

But more strongly than anything, was something else I'd been told by the first neurologist Lee saw back in July, 2010.  He told me that evidence of a seizure having happened is still available and read on an EEG both during, and directly following a seizure.  That the evidence fades each day following.  Lee has never had an EEG during a seizure, so even though we know he has them, nothing has ever been read that has defined either the location, severity, or type of seizure activity.  We're kind of in an archaic state of not really knowing what is going on in his brain.  Far more questions than answers.

I've had to turn into a pushy, demanding mom, trying to get him in.  The soonest he can have an EEG is Thursday morning.  This has been after me going all honey badger on everybody, too.

The level of my frustration and disenchantment with the medical/insurance procedures in California is profound.  Hugo said it best, when he said, "Sometimes it's hard to tell who has a bigger God complex, the doctors, or the insurance adjusters."

Could you please pray with us that Lee's EEG gives them something?  Like, any clues as to what is going on with him?

He is going to have his EEG at Children's Hospital Los Angeles on Thursday morning, at 9:30.  It has to be a sleep deprived EEG, which means we're partying hard with him very late Wednesday night, and then we have to get him up very early Thursday morning, without letting him fall asleep in the car on the way to the hospital.  Tricky!  But, we'll do it.  They want him very tired for the EEG, and they want him to fall asleep for them during it.  He did it back last spring...I know he can do it!  (But, please pray all the same.)

There always seems to be something, huh?  But, to our pleasure, these "somethings" bring us closer together, and more aware of our dependence on Someone higher than ourselves.  We are small, we have no control over events like these taking place, and when they happen, we are both shaped, and at least partially defined by our response to it all.

I want to respond well.  I haven't, really.  I have had F-Bombs on the tip of my tongue since Sunday night, and I've yielded to my inner Honey Badger.  But, then again, those may very well be parts of who I am that have never had a healthy outlet before.  Like, I was uncomfortable with being the type of woman who pushes my agenda.  With the fear of maybe hurting someone, or even worse, making them not like me.  But, there are times, I'm learning, when it just doesn't matter.  My child needs me to be his advocate, and I have to push my way in and through places people don't want me to go, in order to get him what he needs.  And he needs answers.  And help.  And the givers of both seem to be reluctant.

So, I push, getting comfortable in my skin.  I'd say new skin, but no...it's familiar skin.  Just skin that's been kept covered.  I need to show some skin every now and then.

Balance.  I'm happy to find a healthy balance.  With the occasional expletive flying off my tongue as I find my need to do some deep breathing.  Thankfully, God is in this with me.  He's big enough to see me and accept me for  where I am, knowing where I'm coming from, and understanding where I want to go.  I want to go the right way, and He sees that desire, not condemning me for the process a sinner like myself needs to take to finally "get" it.  He is patient.  I am not.  But, I am learning.

The Growth in Lee's Ear is Explained, and a Few Other Oddities in This Thing Called My Life that I Love So Much

Remember me mentioning back in October that Lee has a growth in his ear canal?  And that his doctor had me apply drops in his ear, and then take him back to be examined again, only to declare the growth still there?  And definitely not a foreign object?  Definitely an inflamed growth that needed to be seen by a specialist?  ASAP?

So, I finally got the referral (a month later), and then the appointment was set for Lee to see the ENT last Friday in Glendale (10 miles from Downtown LA).

Remember me mentioning that I have a fairly high FREAK OUT level that multiplies by a kizillion when it comes to my kids?  That the anxiety over something being wrong with my child, or even the anxiety over something maybe being wrong with my child, can send me over the edge completely?  And I unfortunately don't drink enough Merlot to drown the fear?  (I picked the wrong life to NOT be an alcoholic.)

OK.  So, then Lee's been having neurological issues as of late that I've written about recently, that required a moving up of his regularly scheduled check-in with his neurologist.  This revised appointment was scheduled for Thursday, the day before his appointment with his ENT.  On his 7th birthday.  In Long Beach.  (25 miles from Downtown LA)

So, then on Wednesday morning, Lee had a seizure.

OK.  Let's do the timeline in the right order:

Wednesday.  Seizure
Thursday.  Lee's Birthday
Thursday.  Appointment with the Neurologist.  In Long Beach.
Friday.  Appointment with ENT.  In Glendale.
Saturday.  Lee's Birthday Party.  In Back Yard.

I didn't mention the birthday party earlier.  Just snuck it into the timeline.

The appointment with the neurologist resulted in the ordering of more tests.  The seizure Wednesday came after the neurologist upped his anti-seizure meds last month due to increased activity.  His seizure Wednesday morning came at a good time, actually, so that I could tell his doctor in person, when the events and characteristics of this seizure were still fresh.

He hasn't had an MRI since July, 2010, and he hasn't had an EEG since last spring, so she ordered both tests in addition to blood work.  Hopefully, the tests will give some insight into what might be going on with him, and hopefully, he'll have them in early to mid January, or even sooner.  His follow-up with the neurologist is in mid-January.

We were able to celebrate his birthday with Hugo's family Thursday night, and he had phone calls and even balloons brought over by Papa (my dad) all day, and no small amount of excitement over his coming birthday party on Saturday.  It's fun to be 7.  Even with doctor visits, which have become commonplace for Lee.

On Friday we went to see the ENT, and I had to work very hard at not letting myself get all freaky over the possibilities of a connection between increased seizure activity, and the potential growth in his ear.  Especially after what we went through last summer with his grandma's passing due to a tumor on her brain.  It doesn't even take that much for my mind to go wild, but when you add something that big, and bad, and close, and so recent, I was working over time to stay peace-filled and calm.

Even looking for humor on the way.  The fact that when we walked into the waiting room, I discovered that Lee's ENT shares an office with a plastic surgeon, and the plastic surgeon was offering Holiday Specials on Botox, and all I had to do was ask them about it, and it really tickled my funny bone.  Only in California.

The ENT was an older man with a light strapped to his head, illuminating from his forehead.  He had a stern demeanor, but seemed loved by the staff.  He was sitting in the examining room when we entered, and he was on the phone.  He left us in the room while he continued the call down the hall, but I could still hear every word as he chewed out a random nurse at a nurse's station at a hospital for not understanding English.  "It's.  a.  simple.  question.  how.  long.  has.  Mrs.  Smith.  been.  in. the.  I.  C.  U.?!!!!!"  When he came back into Lee's room, I had to stifle a laugh.  And do serious kegels.

He grabbed his looking into the ear doodad, positioned his forehead light into Lee's ear canal, and within seconds said, "The is a foreign body."  He grabbed his picking something out of the ear doodad, and pulled out something red.  He examined it, and declared Lee's very inorganic "growth" to be a very foreign piece of eraser.

If Lee's family practice doctor was in the room, I would have...oh, it didn't matter.  Rage over her misdiagnosis was washed away by relief, but I did have to tell him how adamant she was that the "growth" in his ear wasn't anything foreign.  That it was organic.  And I had to ask him.  Was it really that obvious to him that fast?  And should I be worried that the regular doctor was so wrong?  OK, I didn't say it like that.  It was more like, "Dr. Rosa was certain that it was organic, and she was so concerned.  But yet, you knew so quickly that it was a foreign object."

Without looking at me, and with his eyes still fixed down the flashlight beam into Lee's right ear he said, "Well, I suppose that's why you're seeing a specialist."  So cocky.  So arrogant.  So right.  And I had to  work to not laugh again, because I knew he wasn't trying to be funny.

The drive home was awesome.  I was so light with relief.

Better than that.  We loved it.

Last night, we gathered the whole family into the Family Room, everyone in their pajamas, with their favorite cuddle blanket, a mug of hot chocolate, and big bowls of popcorn, and we watched the Christmas Classic, "It's a Wonderful Life."  Nothing could have been more fitting.  Hugo and I marveled at how we saw parallels between the blessings George Bailey came to discover, and the very ones we ourselves know to treasure and never take for granted.  Even simple things like feared catastrophes being merely a bit of eraser a little boy inserted into his ear one time (zero recollection was the result of Dr. Flashlight's interrogation, so it's a mystery how it came to be a part of Lee for all these weeks).

When we gather up all of those November Blessings from last month, and add in a full measure of Christmas Magic, it's wonderful to see what God can do with our lives when we let Him.  This is a special time of year.  May we all enjoy it.

Lee's Heart Monitor and My Monster Within

At one of Lee's doctor appointments, his doctor heard something in his heart that no other doctor had mentioned before in his 6 years.  She heard a murmur.  So she referred him to a pediatric cardiologist for a specialist's opinion.

He did an EKG and his own routine office examination.  He said he did hear a murmur, but that it was very mild.  But because Lee's heart goes nuts during a seizure (which is understandably common), he wanted to study it further, to see whether there was anything going on in there at other times as well.  And should Lee have a seizure during the test, they would be able to see exactly what is happening.  So he ordered a 30-day EKG.  30-days.  In a row.

To be perfectly honest, I really didn't expect insurance approval.  So when I got the approval letter in the mail, some 2 months later, I was completely shocked.  And a little...what?  Irritated?

Seriously, I was surprised at my initial response.  What was up with it?  I analyzed myself thoroughly and came up with an interesting conclusion about myself.  I'm sick and tired of having to research, and study, and probe, and experience issues with my children with disabilities.  It's not the research, or studying, or probing part, really.  It's the children with disabilities part.

When Tessa was first diagnosed with Pervasive Developmental Disorder: Not Otherwise Specified at the age of 3 1/2, I began my career in research.  I went from, "What the heck is THAT, and why does it have such a stupid name," to then transforming myself into the leading expert on her diagnosis, and all of her needs and nuances that gave her the label in the first place.  I ended up, when it was all said and done, conducting an in-service meeting with her teacher, teacher's aid, principal, school nurse, school psychologist, librarian, physical therapist, occupational therapist, and maybe even the lunch lady--I can't remember who all else.  Since the Internet hadn't reached most of American homes yet, I went to a center in Omaha that had everything you needed to know about every disability diagnosed to people of all ages, and I gathered information like nobody's business.  I accepted that my child had an issue, I learned about it, and I taught about it.  I owned it.

We soon discovered that she had an intolerance to petroleum-based additives (artificial colors, flavors, and preservatives), so I not only joined the Feingold Association, but I eventually landed the volunteer position as Regional Director, taking phone calls from parents from all over the Midwest, teaching them about the ill-effects of these chemicals in our foods, how these chemicals frequently affect people who have a disorder within the autistic spectrum and/or ADHD.   I shared with them about how I cook and serve foods for my family that are free of these additives.  Again, I owned it.

When Tessa's diagnosis was tweaked and fine-tuned and re-named Asperger's Syndrome as she got older and into her teens, I learned all about that name.  This time it was easier--the Internet had happened by then, and the more I learned about the disorder, the more I saw my daughter.  But still, I seemed to have some steam left in me, and I learned about it with zeal, accepting her disability with a sense of hope for her future.

When I first started feeling Lee's seizures within my body toward the end of my pregnancy with him, I prepared myself that we might be in for a challenging future.  When he had his seizure while still at the hospital at 2 days old, though terrified, I was relieved that it had been caught by a professional, and that he would be transported to a bigger hospital with the capacity to find out what was going on.  When they came away with no answers, and assurances that infant seizures are common and can lead to no problems in the future, I enjoyed the idea that sometimes things happen, but that the world doesn't always stop.  Sometimes things return to normal.  If only.

I don't know if it's my age, or if it's having come out of family crisis so recently, but sometimes I just don't think I'm into taking on new challenges.  It makes no sense that I'd be so defiant, given my makeup, and when I'm presented with a challenge I do meet it.  But with a lot less enthusiasm, fewer pep talks in the mirror, and with a more reluctant spirit, I'm afraid.

So the whole heart monitor thing seemed to irk me to my core.  Why put a 6 year-old through something as annoying as having 4 electrodes affixed to his torso, with wires hanging out and connecting to a lanyard dangling around his neck for something that may not even be there?  For a month.  Really?  And what about Raging Waters, and the beach, and vacation, and pool parties?

Is anyone on the other side of his equipment really collecting the data and getting a good read on the rhythm of his heart?  Will a 6 year-old keep all four electrodes connected to his chest for long enough periods of time that they are really able to get a consistent read?

We were told that when we are engaged in water play, or if it's bath time, all we have to do is detach Lee from his wires.  So when we were at Raging Waters and I got a phone call that Life Watch had lost it's transmission 3 times last week, I was pleasantly surprised.  They really were watching him.  I explained that on those three days when they had lost the signal, Lee had been playing in the water, and they were happy that that was all it was, rather than a problem with the equipment.

That's normal, right?  To just be tired of having to contend with things as difficult as children with special needs?  Few things are as painful.

Isn't he a cutie?  He thinks it's cool that he gets a cell phone of his own for a month.  No, he can't call with it, no, he can't play with it.  But he knows it well.  When it vibrates, he checks it to see why.  Usually it's because an electrode has come detached.  So he reattaches it, and then resets the phone.  He's such a champion.  He's so strong-hearted.

Me?  I suppose I'm learning about myself along the way.  Clearly, my annoyance is directed at the fact that there is yet something with my child that is needing to be tested, rather than the devise itself.  My lack of acceptance is a reflection of a form of denial on my part.

The working-on-my-attitude part is ever my challenge lately--stepping out of denial and into a place of acceptance.  But I work at it.  Hard.  I believe that since there is an issue with the little man, we need to pick at it until we find it.  I won't tire, and I won't lose heart.  But I will be aware that I really am tired of it.  The situation--not the quest for answers.  It's OK, I believe, to be tired of it, and even better that I know that I'm tired of it.

I own it.

Lee's History and My Latest Yahoo! Article

What a good day it was today!

Yesterday I shared about Lee, and some of the things I observe in him as we travel through life.  If it's OK, I'd like to share some more about him today too...but please know that I know he isn't my only child!! :)

His Kindergarten class had a field trip today to the La Habra Children's Museum, and I got to accompany them as an official chaperon.  What a privilege that is!!  I remember too well how difficult it was to see his bus off last year as he went on his first-ever field trip.  I couldn't go, since I had a job to go to.  But this year, I have been on all of the field trips, and I count it all as a tremendous blessing.

When it was time to pack the kids back up onto the bus and head back to school, Lee and I left in our own car so that I could get him to a follow-up appointment with his pediatric neurologist in Long Beach.  This appointment came after what seemed like an eternity of waiting, since his initial appointment and EEG to possibly read seizure activity was a good 6 weeks ago.

When I was about 7 or 8 months pregnant with him, I noticed a strong shaking feeling in my abdomen, as if Thumper from the Disney movie Bambie were inside.  This happened around 3 times, and each time it would last for about 20-30 seconds.  I mentioned it to the doctor, but nothing happened when I was at a doctor appointment, so we were never able to evaluate it.

At 2 days old, Lee had a seizure at the hospital the night before we were to be discharged.  We lived in a small Nebraska town, and we were flown by helicopter to a hospital with a NICU.  For 6 days he was tested and evaluated and then released with neither a cause of the seizure, nor immediate alarm of damage having been done.

Fast forward to July 18 last year.  Lee was watching television one morning as I got ready for work, and out of nowhere he grabbed his head and cried just seconds before he fell over unconscious.  A day at the hospital revealed a Stage I Chiari Malformation.  The back of his brain, rather than being protected within the confines of his skull, protrudes down to his spinal column in his neck.  As horrifying as it seems, it is a benign malformation, as far as brain problems go.

Last December he was playing with Hugo and after having had a whiplash-type injury, he fell and went into a seizure.  After that episode, there followed multiple seizures and many visits to hospitals and doctor offices.

He is on anti-seizure medication, and the appointment today was an evaluation of the benefits and/or quality of the medication.  Thankfully, he was given a thumbs-up from the doctor, as the seizure activity has quieted since he has been medicated.  There have been few to no side effects, and as his blood has been tested for the levels of the medication in his system, it has been found to be at a relatively low level.  As Hugo put it, this means it is the best situation--not that much medication in his system, and what is there is doing its job.

Again, just like Lee, I have to learn how to live in a world where high-drama isn't the norm.  Two months ago, I was sure that the sky was falling again, and that we would be sent through a season of extreme stress and pain.  Yes, it has been extremely stressful and painful, but no more than what is normal in this thing we call life.  People get sick every day, or injured, or have less-than-perfect things happen.  It doesn't mean that the sun won't set tonight, or that the ocean will forget to stop at the shore.  It's a bump in the road, but yet we still have a road on which to travel, so all is well.

Guess what?!  I had an article published on Yahoo! today.  It is an inspirational article that gives the perspective of looking high, and even living high above the adversities of life.  Please check it out, and please share it with someone you know who may benefit from something uplifting.

http://www.associatedcontent.com/article/8099469/soaring_high_above_the_adversities.html?cat=34

I love you all so much, and I thank you for your reading my Blog, and for your support.

Lee's New Normal

We are counting down the remaining days of the 2010-2011 school year.  Nobody in our household is  graduating or promoting this year, so it's refreshingly low key.

Lee will be finishing Kindergarten, so that's a big deal, but still very chill.  This will be his second time completing Kindergarten.  Last year the poor little guy had to enter Kinder as a 4 year-old who didn't even turn 5 until December.  His birthday is the day after the cut-off, so he was literally the youngest kid in class.

He received speech and language therapy in pre-school, and it was the policy of the district we were in at the time that if I opted to hold him back, he wouldn't qualify for speech and language therapy the entire year I had him out of school.  It was either hold him back, and then start Kindergarten the next fall when he was 5 and more mature, or put him in as a 4 year-old and have him be the youngest kid in the class, but yet he'd receive the therapy he needed.  I decided to have him go ahead and go, so that he could continue to get help.  He did surprisingly well for his age academically, but he was still young, so we decided to have him repeat it again this year for a better foundation.

Lee has had speech and language therapy since he was 2 1/2.  He has a lateral "S," which means he slurs his "S" sound to where the air escapes the sides of his tongue.  Some therapists have wondered whether this was the result of seizures he had as an infant, but his neurologists have yet to attribute seizure activity to the low muscle tone in his mouth.

At the time of Lee's pre-school years, I was a single mom, and completely overwhelmed with the needs of my children.  Each of them had a list of needs that were critical and demanding of my attention, and each list was longer than my ability to accept and/or attend.  I hit what I could, when I could.  Things like fighting for Lee's right to speech and language therapy, without having to endure the stress of being put into a setting ahead of his emotional level, was beyond my reach and level of energy.  I accepted the district rule, and hoped Lee would benefit from both the therapy, as well as the academic setting...knowing full well that he'd end up repeating the year.

But as last year continued, it became clear that Lee's Kindergarten environment was anything but ideal.  He had a hard time focusing...almost as though he didn't have a will to even try.  The teacher would comment about this but would always be quick to say that Lee was a nice little boy.  I did what I could at home with him, making sure his homework was done, and making sure he was read to by a sibling or by me, but I could only go so far with him, getting home late from work, only to have to get him to bed so that we could start it all over the next day.  As the year continued, the teacher's patience with him lessened.  He had kids in his class that noticed her blatant and critical demeanor toward Lee.  It was her last year of teaching before retiring, and she was tired...add to that fact that there were several kids in the class with disciplinary problems due to crisis within their own  homes.  Still, she was critical of Lee, and he sensed it.

After the school year ended, we bought a house in a community with an easier commute for Hugo.  He works in Glendale, and we bought a house in Glendora, a community far removed from the school district we had been in.  The kids were put into excellent schools--something Hugo painstakingly researched before we made an offer on a house.

On the first day of school this year, I knew that Lee was in the right place, at the right time.  He has had the best teacher he could have been given.  He has thrived, and so have I.  Rather than working 6-7 days a week as I had done as a single mom from the time Lee was 2 until he was 5, I was home full-time, with the freedom of volunteering in his classroom regularly.  I got to know his school mates, and their families, and deep friendships have developed.

But even though our circumstances have improved incredibly, and Lee is experiencing stability for the first time in his life, it has been hard for him to "get" what is normal.  To him, normal is living in a different house every year.  We have only been in our house since September, and in these 8 months, Lee hasn't grasped the fact that we are in this house for good.  For the first few months, he would ask me where our new house would be, or he would say that he loves his house now, and that he'd miss it when we move.

Last week, we were talking about this school year being just about over, and he asked me where he was going to go to school in the 1st grade.  I told him that he will go to the same school where he is now, and that he would be there until he is all done with the 6th grade.  I told him again that Papi and Mommy bought this house, and that means we will be living here for a long time.

It's just the more subtle and not-so-subtle reminders that the chaos of our life for the majority of his young years has been far reaching, and although we have made all the giant leaps in the right direction, it still takes time for all of the positives to work their way in and through the painful and ugly years.  But try we will.  We won't lose heart, or give up.  The stresses and challenges of our life up to this point will strengthen us in time, as we allow God to do His thing with it all.

Today, as I volunteered in Lee's class, I took individual pictures of each of the 26 Kindergartners wearing a red graduation cap and gown.  They were precious.  It was another milestone, and an ending of something significant in Lee's little life.  Happily, though, I know that it's just the beginning of many more positively significant things yet to come.

How cool is that.