Archive | May 2016

Ode to Lucky

This goofy little dog.  Looking back, getting an epileptic, non-housebroken dog three days after Sam had the biking accident seems like it would have been a mistake.  But in reality, it was the best decision.  Lucky Charms is simply the perfect dog for our family.

He’s the right size, small but still looks like a dog to me.  I’m not a dog snob, but I really love german shepards, or labs or retreivers.  Those are the dogs I grew up with, and that’s what I wanted.  But our little apartment barely has enough space for us.  Lucky looks like a miniature dog.  He’s small enough for me to pick up easily.

He’s calm, never barks, has never shown any sign of aggression.  Julianna was terrified of getting a dog, and still isn’t very fond of anyone else’s dog.  But she loves this one.  Jessie was already primed to like him.  Even Marc, who isn’t really a pet sort of person, is reluctantly coming around.  It’s impossible not to love Lucky.  He’s peaceful, laid back, happy to go with us, happy to stay home curled up and sleeping.  He loves going for a walk, loves going to pick the kids up at school, and best of all, his default position is curled up next to Samilicious Boy.

I’m not saying that housebreaking this dog has been easy, but I think we’re making some progress.  Slow, slow progress.  If I’m at home, and paying attention, then he will happily go outside.  But he makes no sign that he has to go, so it’s really a matter of paying really close attention, taking him out on a schedule (that gets thrown to hell often enough with doctor’s appointments, etc), and copious amounts of praise and treats.  He’s trained to go on a puppy pad, fortunately, so it could be worse.

The epilepsy seems to be mostly under control.  I have a pill organizer for Sam as well as for Lucky.  He takes one pill in the morning and at dinner, another one in the morning, mid-afternoon, and before bed.  It seems to be working – we’ve changed the regiment around, adjusted and added different doses, but he hasn’t had a seizure in weeks.  Best of all, having Lucky makes Sam’s life better.  The quickest way to get him to talk to a doctor or nurse was to start talking about his dog.

 

To the other people in the elevator

I wasn’t abusing my son.  I know it looked like I was.  He was obviously miserable and in considerable discomfort, and I did, in fact, have my arms wrapped around him and was dragging him out of the car.  I did, in fact, use my leg to knee him in the butt to get him into the elevator.

It felt like I was abusing him,  honestly.  At least, part of me felt like I was.  That’s the part of me that’s just all emotion – knee jerk, straight up, no thought maternal ooze-ing part.  The part that just wants my kid happy.  Safe, secure, and not afraid.

That part of me has taken a beating lately.  Because all of this, the stomach problems all thru the fall, the crippling anxiety of the winter, and then the accident.  The pseudo tumor, the vision loss, the pain.  That part of me had to be silenced, as much as I could.  I had to ignore that part, so that I could hold him down for shots and blood work.  That part was dying inside, that part of me was horrified on every single layer.  When I had to wrap my arms and legs around him and hoist myself up onto the gurney for transport.  When I had to hold him, kicking and screaming, and begging me to please stop, to please take him home, to please just take him home.

That part of me is still there, and still crying.  Every time he’s scared, or belligerent, because I know that’s just anger masking the overwhelming fear.  That part of me that aches for my little boy.

But there’s another part of me.  The part that knows that the doctor knows more than he does, and when Sam insists that he’s fine, he really isn’t.  The part that knows that the anesthesia he dreads will be a godsend so that he won’t fight the rest of what’s going to happen.   The mom who forces her child to do what he dreads most, the one that drags him out of bed, kicking and screaming, dresses him against his will and forces him into the car.  The one who calls the doctors, again and again, begging for answers and treatments and relief.

So I know I looked like the worst mom in the world today.  Believe me, I thought I was too.  Because it doesn’t feel right to make your child suffer – but I know that Sam doesn’t need to feel better right now, he needs to be BE better.  He needs to be able to see, to be able to run around, and feel confident and safe and secure.  And it’s only by doing this – by forcing him to do what he hates, by going to the doctor, by yelling at him until he takes his meds, by forcing him to drink, to try the food, to just keep going – even when everything about him wants to give up.  I tell him that I’ll be strong for him, he doesn’t need to know that he’ll be okay.  I’ll know for him, I’ll do it.

I can be the horrible mom, because I know that it’s only by being the horrible mom, the one who drags kids into elevators when they’re kicking and begging to go home – that’s the only way that the other part wins.

He ate salad

Sam’s eating again.  Not a lot, and the list of food he can’t tolerate is significantly longer than the list of food that he can.  He can eat peeled apples, salad (lettuce, cucumbers, croutons and salad dressing), and white rice.  French fries.  He can drink ginger ale and water.

And that’s such a stunningly huge improvement over where we are – I know that.  But still – salad and rice and apples is not a sufficient amount of food to grow a nine year old boy.

Appointments continue – feeding clinic and neuro-opthamology tomorrow, and regular pediatrician on Friday, therapist next Tuesday and physical therapy the week after that.  It’s progress – huge, unbelievable progress, but it still feels like such a long, long road to get back to normalcy.

In other news… we’re counting down to the end of the school year for the girls (which just reminds me of how much I need to be able to focus on educating Sammy).  Julie’s kindergarten teacher is moving up to first grade, which means that we get to have another year with her.  Jessie is heading into 8th grade – and can we just take a minute and think about that?  8th grade.

Both girls seem to be doing well.  Jessie’s grades are fabulous (except for math, but that was crappy before the accident).  Julianna is reading and writing and thinking all the time – she’s a little sponge and just soaks up everything, all the time.

Fifteen more school days, and then we’ll be in summer.  I can’t decide if I’m looking forward to it or dreading it.  I love summer vacation, more time with my kids is always a plus… but, let’s be honest, my kids don’t like each other much these days.  Sam is so short tempered and impatient, and Julie and Jessie are convinced that the other one hates her.  But we’ll be able to do stuff – or we could if we weren’t so completely screwed financially.   Okay – this isn’t helping.

Legit wiped out

I’m exhausted.  I keep falling asleep – I couldn’t stay awake after lunch and ended up passing out on the couch for ten or fifteen minutes.  It’s 7:18, and I’m barely making it until it’s time to put down Julie.  And that’s after a huge coffee around three.

Sam’s asleep now, Jessie’s in her room binge watching Grey’s, and Julie’s snuggled up next to me watching a movie.  Marc just got home, and is in the kitchen trying to find dinner.

I started the battle to get Sam to take his nighttime meds around four thirty.  The thought was that if I started early, maybe it’d be over and done with, and the night would be better.  Instead it got ugly, really fast.  I ended up taking the kindle away from him (which killed me – because there’s literally nothing else to distract him at this point, it’s not like he can go outside and play, or color, or play with legos, or read), but once he pointed out that he was listening to it at top volume with his head phones to drown out my voice, I really didn’t have any other choice.

He promptly fell asleep.

On the upside, at least I got his eye meds into him.  Sort of.  If your standards are low.  Mostly, I got it outside his eye, but the attempt was there.  Hopefully, that’s enough.

Tomorrow will be a better day.  I write that so optimistically, then I remember that tomorrow, we’re going to the pediatrician, and they’re doing bloodwork.  Tomorrow may well be more hellish than today.

He is getting better.  He hasn’t thrown up today – and the last time yesterday was early in the morning.  And he’s drinking ginger ale instead of water.  While ginger ale isn’t healthy, it’s at least got SOMETHING in it to keep him going.  He’s not drinking as much ginger ale as he was drinking when when it was just water – but everything, everything tastes so horrible to him right now.

I’m in hell

Look, there are going to be good days and bad days.  I know that.

Today is a bad day.

I fought with Sam for more than an hour about taking his medication.  I threw a phone and a doll carriage, he swore, I swore back at him.  He cried, I cried.   We were both furious and desperate and sad and scared.  He’s still sick to his stomach, still can’t stand for any length of time, and swallowing the pills hurts his stomach.  But if he doesn’t take them, then the pressure might elevate back up and we’re right back where we started.

In the end, he took them.

I’m shaky and cried out.  He’s exhausted and depressed.

All I could think was that I was going to have to bring him back into the ER.  And they’d probably end up taking him and putting him into the mental health ward, because he’s so depressed.  Which would mean that they’d take him away from me.  Or alternately, I’d be trapped in the hospital, the place where he’s most miserable and unhappy, because only there can I make sure that he’s getting the medication he needs to get better, all the while having him sink lower and lower into depression – and the entire time I’m there, I’d be missing my girls and my husband and my dog – and the whole family would be lost in this endless loop of misery and sadness.

It doesn’t feel like this is getting any better.

I know it is.  I mean, he’s drinking ginger ale, so right off the bat, that’s more than just water.  And he did, in the end, take the meds.   He’s resting sort of comfortably, and he’s not complaining of a headache.  He hasn’t vomited since yesterday morning.

 

No sleep

I read somewhere (probably when I was seriously sleep deprived, so it may not be entirely accurate) that the human body could go without sleep for one night and it doesn’t make much of a difference.  I find enormous comfort in that.  And because I’m a huge believer in the placebo effect – in that, if I believe it to be true, I’ll make it so – it works for me.  Every now and again, circumstances will be such that I just won’t sleep that night.  It’s really entirely kid directed – I never randomly decide to not sleep unless there’s a child demanding that I be awake.

But it is nice to know, and it was nice to remind myself last night when I couldn’t sleep, that I could still survive today.

If I don’t find coffee, though, all of this may be moot.  Lack of caffeine might kill me.

We did okay last night.  He was so much better than I had anticipated – he was calm, conversational.  Kicked my butt at chess.  His vision is maybe a little bit better – but it’s hard to know what he can see.  He’d swear that he sees FINE, and thinks that it’s maybe a little bit less blurry.  He was in no pain, which is the main thing.  A little headache, which is to be expected after a spinal tap.

His main problem now, other than the fact that we’re here, and his dog, sisters and dad are in Worcester, is that he’s got a catheter in his hand.  He hates it, and flat out refuses to get the IV attached.  So far, they’ve been wonderful here with him.  His nurse tried to hook the IV up to it last night while he was sleeping, and he woke up and was upset.  She removed it right away.  Unfortunately, he was up for two hours or so after that… but God bless wifi and netflix, because he just watched cartoons quietly until he fell back asleep two hours later.

I couldn’t sleep.  I dozed.  Off and on, and finally gave up.  Watched more netflix, read for a while.

 

The hospital

We found out last night that Sam needs surgery.  Actually, we found out two days ago, but it was supposed to be done sometime next week.

Last night, we found out it was today.

It’s just Sam and I at the hospital.  Marc needs to be home, he needs to work, and we both agree that the girls need a parent at home.  So I’m here alone, and for the most part, it’s fine.  It was a little touch and go earlier – when he was freaking out and someone had to talk to the doctor.  He was terrified and wouldn’t let me leave the room, so he talked to the doctor too.

It’s not the average nine year old who could hear the surgeon casually talking about slicing a little hole in his eye and be able to handle it.

But he did.

He’s terrified.  But he’s managing.  I’m so, so proud of him – because he’s so brave.  I’ve thought, so many times over the past couple of months, that Sam is a horrible patient.   Because he is.  But I’m realizing today that it’s less about Sam being a horrible patient and Sam being in a horrible situation.  He’s just a little boy – and he’s had to deal with so many things, so many awful, terrifying things happening to him and he’s got no say at all.

He’s in the MRI now, and they’re doing another spinal tap afterwards.  It’s going to take another half hour or so, and then recovery.  Surgery tomorrow, and then maybe, we’ll go home tomorrow night.  More than likely, it’ll be on Friday.

 

Options

We have options.  None of them are good.

We had the doctor’s appointment today.  Five hours worth of doctor’s appointment, adding in commuting time back and forth to Boston.

It might just be that his vision is permanently gone in his right eye.  His left eye is basically 20/30 with incredible nearsightedness.  He can see pretty well, it up has to be really, really close.  His right eye is 20/200.  It’s possible, probable, that the damage to the optic nerve was just too great, and isn’t going to improve.

It’s possible that there is a clot, or a problem with the veins.  Something that’s just not allowing the cerebral-spinal fluid to drain.  Maybe we need to do another MRI and spinal tap.  That could probably be done on an outpatient basis.

It’s possible that what he really needs in a stint or a shunt.  Not sure why he’d need one versus the other, because my mind was screaming “BRAIN SURGERY” over and over again at this point in the conversation.

And what’s makes it worse is that even if we decide to it all, the MRI, the spinal tap, the surgery – there’s a good chance that all we’d get is minimal improvement.  That he’s never going to regain full sight in that eye.

We’re home tonight, and waiting for a call from the neurosurgeon.  They’re consulting tonight.

I have no words.

I don’t know what to hope for – another round of testing, which is torture and trauma for my little boy.  And no guarantees that it’ll help.  Or acceptance that it’s not going to get any better – that my little boy is going to partially blind, and will have to live his life with only one good eye (and even that eye is crappy by any reasonable standard).

This is where we are.

But we’re home, and I’m grateful for that.  I’m grateful that he took his meds tonight without a battle.  We learned that the metallic taste in his mouth is because of the diamox.  Which is good news, because I thought it was because of the concussion, and might or might not come back.  But it’s actually a common side effect of the medication, and will go away once he’s able to stop taking it.

My girls are okay – they spent the day with their grandmother (did I mention that Julianna had head lice?  I found it last night, and kept her home today to make sure that the shampoo/removal worked).

I’m numb.

 

Sweetness

There are a lot of up and downs these days.

One of the bigger challenges has been Sam’s sense of taste.  Sam was an eater – he was a kid who LOVED to eat.  Loved it.  He had a huge appetite, and it was an incredible source of pleasure for him.  Not just pleasure – comfort.  He was a huge comfort eater – it soothed him, it stopped the gastrointestinal pain.  He just straight up loved eating.

Now he doesn’t.  His sense of taste is all out of whack.  He doesn’t like anything anymore.  He can’t eat meat, condiments, can’t find a fruit or veggie that he’ll try.  He drinks water.  All the time.  He’ll eat cinnamon buns, peanut butter, and chocolate rice crispies.  That’s it.

It’s incredibly frustrating, not just for him, but for me too.  Because every meal means tears and sadness and anger.  There’s nothing I can offer that he likes, only those three things that he’ll tolerate.  Forget healthy – I’m just shooting for food in his belly.

Last night, I was making beans and hot dogs.  Sam used to love that.  He loved hot dogs cut up in beans, hot dogs sliced with ketchup, hot dogs in a bun.  But now… he can’t eat that any more.  He was so sad, and so hopeless, and then so angry – and there was nothing I could do to make it better.  I just have to sympathize, and encourage him to problem-solve, to want to accept solutions instead of shooting them down, and to know that it’ll get better.  He was mad, and yelling at me.   I know it’s normal, I know he’s got to put the anger somewhere, and I’d rather it be me than himself.

Eventually, he calmed down, asked for cereal and ate two bowls.  Given that it was all he ate yesterday, at least it’s fortified, right?  Go me.  The night moved on, and I was busy bathing Julie, putting her to bed.  Marc came home just as she was going down, and I let her get up and go play with Daddy for a while, while I vegged out with netflix waiting for her.  When Marc finally sent her back into her bedroom, I heard Sam ask him to run a bath for him.

I have to explain that Sam wasn’t a fan of bathing before the accident – he was the grubbiest toddler I’ve ever known.  He hated baths so much that on at least one occasion, he cried until he vomited in the tub.  Sam never, never, never asks to get clean.  He bathed, but it was always me suggesting, pushing and then insisting.  After the accident, it got significantly harder.   Getting in and out of the tub is hard.   It hurts.

His hair is a disaster.  I like it shorter.  Not super short, but shorter.  I wanted to get it cut before the accident in early March.  I’ve been teasing him about his hair, talking about getting it cut off and on, and he’s always insisted that he’ll do it later, once he’s not broken, once he’s all the way healed.   Given that there’s so very little in his world right now that he can control, I didn’t push.

Last night, he asked his dad to fill up the tub, and to cut his hair.

It was the sweetest apology I’ve ever gotten.

Deschooling, stealth schooling, unschooling, oh my…

I’m a homeschooler.  So to speak.  I’m homeschooling in theory – in reality, I’m reading Harry Potter and the Prisoner of Azkaban out loud and strongly suggesting that he watch documentaries.

We’re in a weird place right now.  Not just with his physical and emotional recovery, but also with his academic recovery.

He’s physically recovering, a little bit, slowly, slowly.  There is progress, but he’s still seriously compromised in a lot of ways.  Physical activity is non-existent, his appetite is totally shot, he still gets headaches and can’t see at all in the dark.  His eyes are tracking better, I don’t think he’s technically legally blind any more.  But I don’t think he can see well enough to read anything serious, and he gets pretty intense headaches when he concentrates for a long time.

Emotionally, he’s hanging in.  The anxiety isn’t overwhelming, but it’s only because we don’t do anything.  He can’t do anything, so it’s not like I’m asking him to go anywhere or do anything that would incite the anxiety.  Unless it’s going to the doctor’s – in which case the anxiety goes thru the damn roof.   His whole idea of safety is wrapped up in me – he gets really tense when I’m not home.   The few times I’ve left the house (other than to run and do pick up and drop off for the girls), he calls me, crying and begging me to come home.  The idea of getting a sitter to stay with him other than one of his sisters freaks him out altogether.

And academically – I’ve got nothing.  He can’t physically do anything and has absolutely no desire to do anything academic.  Watching “educational” videos cause meltdowns (God help Julianna who LOVES the schoolhouse rock DVDs I got for him).  I read out loud to him.  From a book he’s read before (Marc read it to him years ago).  He’ll watch news with him, documentaries and science shows.

So I’m researching – there’s little I like more than a little research.  Stealth schooling is my new favorite term – I trick him into learning.  A little bit.   I hope that we’re making the right decisions with him, I pray that by decreasing the pressure, by stepping back, by giving him space to heal, space to thrive, he’ll come into it on his own.  I deflect the questions, I smile sadly when people tell me that he’s falling so far behind.  I know he is – I’m just hoping that we can stop looking at it as he’s falling behind, and more like he’s just where he is, and go from there.  If I’m homeschooling, maybe I don’t need to worry about grade level.  He’s learning, he’s just not learning in a traditional manner right now.

My hope, please God, my hope is that he’ll continue to heal physically so that we can work on everything else.  We can work on the anxiety – maybe the anxiety won’t be anywhere near as intense if we aren’t doing public school.  I wouldn’t have described him as an anxious kid prior to sending him to school.  Maybe pulling him out of school will be the best thing we’ve ever done for him.  Maybe this is will give him the opportunity to thrive, to grow and learn and be exactly who he wants to be.