Wednesday, August 31, 2011

Magic Carpet Ride

When AJ first began toddler group at the age of 2 years-11 months, there were three times during the course of group time where the kids would sit on carpet squares.  They'd grab them from a pile by the door, and put them away when they were finished.  It thrilled me the last few days of group, when AJ finally began sitting much better for the beginning circle time and  understanding the concept of holding his carpet square as he was guided to the door, and then dropping it in the pile.

When AJ began preschool it was disappointing to me that AJ was not able to participate in morning circle time, again, on carpet squares.  At the end of his first year, on the very last day actually, I saw him sitting with his friends, sans carpet squares but on the actual carpet.

During his second year of preschool he learned to consistently sat on his carpet square for morning circle time, the ENTIRE circle time and learned to anticipate the routine and participate.  He sat and paged through books with his classmate.  He learned to stay on his towel for quite time, the entire time.  While he struggled with different events (ie Holiday Party/Santa's Visit), the consistency during his normal routine was amazing.

Fast forward to last evening at Meet the Teacher Night for our little boy who is now in kindergarten.   We left the house in a rush on the muggiest day we've had in a few weeks. Eww.  For some reason it is always hot and muggy on Meet The Teacher Night.  I was a bit nervous, even though I knew who his teacher would be.  She had called earlier in the afternoon to chat, which put me at ease.  Less to try and "report" on such a crazy night.  AJ technically has three teachers.  He has his Teacher of the Deaf (TOD), Special Education Teacher, and the main homeroom regular Kindergarten teacher.  AJ will be spending most of his time between his TOD and his Special Ed Teacher.

As I stood in like with AJ's TOD to meet the main homeroom kindergarten teacher, I felt a bit of panic rise up inside me as we entered the room.  It was a huuuuuge room.  To the right I noticed a huuuuuge carpet, in a rainbow of colors.  One row was red, orange, green, blue, purple.  One huge carpet square.  How cute, I thought.  But definitely not appropriate for AJ.  It took literally seconds for me to deem this environment not appropriate for my kiddo.  He would be totally.lost. We spoke with the teacher for a few minutes, whom of course knew AJ already (everyone seems to know this kid) and said she had seen me around.

Meanwhile, AJ was outside in the hallway with his Daddy, having a massive meltdown.  This always happens at Meet The Teacher Night.  We begin our routine of early bedtime and longer days, and he's exhausted.  He had gone to bed at 6pm the night before, so when 6:05 rolled around and he was at school, when he's normally in his PJs in bed, he was noooot happy.  Along the way we ran into many of AJ's classmates.  We love being part of such a special family.  It is amazing.

We made our way down to his Special Ed teacher's room and chatted about AJ's new iPad2 that we were anxious to pick up last night after all the school shenanigans.  AJ's daily schedule is the topic of a meeting between the teachers today, so I should receive a phone call on that later.  For the month of September, he'll be attending M-F until 1:40pm.  At the end of September, we'll reevaluate and adjust his pick-up time as needed.

Our last stop was back in his TOD's room, where AJ made himself at home by finding the fan and...the carpet.  A smaller carpet, with a lovely texture that he sat down on and rubbed to his little hearts content.  At that moment, I knew he'd be fine.  While his TOD and I chatted more, AJ found the carpet even more comfortable, as he crawled into fetal position on the floor and wanted to sleep there.  As we were preparing to leave, he explored the room and found the sink right.a.way.  Crazy to see him walk right up to it and be able to reach everything-he's that tall!

I've had small moments of sadness, thinking about how my little boy is in kindergarten...but he's really not.  It bothered me to buy and sharpen pencils, knowing he won't use them.  He does not know his colors, numbers, letters.  He cannot spell his name.  While my mind has mostly adapted to this reality, every now and then there is a zinger or two that hit just at the right time that I lose it.  But last night was not one of those moments.  The minute I saw him sit down on the carpet, I knew he was in exact the right place.  It was the right place, the right carpet, and it was indeed, magical.

Friday, August 26, 2011

Winding Up

Its 4am and I'm wiiiiiide awake.  Funny what stress does to you.

Our sitters have been swamped with summer classes and visiting their families, so Jer and I haven't had a whole lot of time to ourselves.  I was thrilled when an "old" sitter (old meaning she's had a big person job for over a year now and left us back then) offered to watch AJ for us.

On Tuesday we went and saw the movie Crazy Stupid Love, which was SUPER GOOD.  As we walked out to our car, reminiscing about our own dating journey and all that goofy love cloud chatter that happens after watching a movie you relate to, I got in the car and gasped aloud as we pulled out of the parking lot.

I forgot to give AJ his seizure medication that night.  I panicked and panicked, as we've NEVER missed a dose before, all the while Jeremy assured me AJ would be fine.  We had started our afternoon at a much-stressed over GI appointment and then, since the weather decided to cooperate, I rushed home to grab pants and AJ's riding shoes and then drove to the sticks for riding therapy.  We got home, shoved some food in our mouths, and left for the movie.  And I totally forgot to give him his Keppra.

I called the sitter and asked if he was awake, he had just gone down 20 minutes earlier.  Waking him up to take the medicine would have been a holy disaster, and odds are he would have choked on it.  Waking him up would have required a full wakeup, and, well, we chose not to.

Fast forward to late Wednesday morning.  AJ wakes up (he's been sleeping late due to growing) and doesn't want to get out of bed.  He gives me his famous morning smile, but keeps folding over his pillow.  I walk him to the potty and he folds over the toilet, but no screaming-translation, I'm done get me off this thing.  I lift his dead weight body up and see he's having a seizure.  And by seizure, I mean drooling, the whole nine yards.  Not a cluster of absent seizures like we had seen a few weeks ago.  I set him on his bed and watched him till it stopped.  Then when he was back up to par we tried brushing his teeth.  More seizures.  His body goes weak.

Oooooooook.  New territory.  I sat him back on his bed and watched my child seize in complete horror.  No other word to describe it.  These were definitely seizures, no question about it.  He'd be fine for 30 seconds to 1 minute and then seize for 30 seconds.  Off and on.  I ran to grab his CIs and had already given him his morning dose of medicine. There was a profound amount of drooling, lip quivering (this is new) and mild twitching jerking of his upper body.  I called the neurologist's office right away.  But after a few more seizures and no calls back, I had already started pulling stuff out of his drawers preparing for the hospital.  This was in-between making sure he was still breathing and patting his legs, calling his name all through a stream of tears like something out of a freaking movie. Trying so hard to try and stay calm for my little boy, but crazy freaked out at the same time.  As if calling his name is going to snap him out of it.  I called 911.

He was sitting upright, but lethargic when the paramedics arrived.  It seemed to take forever to get clearance to go to our hospital of choice, but we finally got it and I followed in my own car.  I did not want to get stranded at the ER again.

If there has been one perk to Jeremy's new job, it is that he's been able to attend two important events in AJ's life.  The GI appointment the day before, and now a trip to the ER.  AJ was fine, crying and fussing when we walking in to his room, so we knew he was feeling better.  All in all the visit was very short and no exact reasoning was given.   A combination of the lack of medication and mayyyybe his fall last Sunday might have readjusted how his seizures are triggered.  That is much less likely than, um, my kid didn't get his medicine.

I left the ER with a rather tired boy and we stopped at McDonalds, because he was starving.  He napped as soon as we got home and was still tired when he got up, but a much happier little boy. We had friends over for pizza and it was a nice night.  It was nice to take my mind off of what had happened a few hours earlier.  However, I am making a rule.  No one is allowed to take pictures of me on an ER day.  Yikes.

Fast forward to yesterday morning, where AJ woke up happy as a lark and in much better spirits.  Only to have leads put on his head for a 24 hour EEG here at home.   I didn't cancel the appointment because, well we want to know if he's having clinically silent seizures (no outward symptoms) and we need to have this done before school starts-next week.  Clearly, he showed he could have symptoms the day before.  Anyhow, the last EEG we had was torture, for both AJ and I, so I was wound up as to how it would go.  He's done amazingly well and hasn't tried to pull that sucker off at all.  He even did well when she was putting the leads on.  I must say, the tech was fantastic, but I was prepared for horrible AJ to show his face, and he didn't. The only part his did not like was the air compressor.  Yeah.  They put the leads (electrodes) on his head with glue, then she saturated a small gauze piece with nasty smelling glue, then sticks a small sprayer type thing in a hole on the electrode and blows cold air on it all to dry the glue super fast.  His head is wrapped with gauze and then a stocking type thing, that leads down to his tail of wires and into the unit itself.  He looks like he's wearing a turbin on safari.   He did really well yesterday carrying the unit in a fanny pack over his shoulder.  I'd give him breaks from carrying it when he was eating and if we were sitting and playing.  But beware when he gets up to go and you have the unit not attached to him.  Yikes!  Of course, saying "HEY!" didn't help, because.....he couldn't hear me!

Which, is extremely difficult when your now hearing child via the wonderful magic of CIs can't hear.  ALL DAY.  What an amazing discovery as to how much he uses his hearing.  Anyhow, he was annoyed at me looking at books, because he couldn't here me.  Or his pop-tube, the puzzles, the microwave.  All things he KNOWS make noise.  Very cool, in the grand scheme of things.  By the afternoon I wasn't thinking it was so cool.  Our tree trimmers chose to come yesterday-I didn't anticipate them being here all day.  Since AJ needs to be 20-40 feet from this schmancy laptop they've set up here in the house, we were homebound.  Which would have been fine, if I could have taken him outside.  Chainsaws, ropes, falling tree limbs, chippers, and such do not provide such a great environment for a 5 year old.  He was stir crazy and so was I.  My adrenaline wore off and I was questioning why I chose to do this after yesterday's ER visit.

We went out for a family dinner last night, thanks to the same sitter.  I was never more thankful she's a nurse and was not freaked out when I told her what happened and if he has a seizure you push the button on the pack and log his activities, etc. Love her.  By 9pm, my stomach was in knots and I was exhausted.  By 11pm I was even more exhausted.

 AJ and I were up at 4am, for different reasons.  I think the last two days finally caught up with me.  While I did sleep last night, out of pure exhaustion, tonight not so much.  I feel myself winding up instead of down.  Watching your child have a seizure, and not just an absent one where he stares off into the distance, is seriously trauma.  Holy crap.  And while I harbored most of the Mommy guilt the night I didn't give him the medicine, clearly, this kid needs his medicine.  There IS a logical reason for me to be so diligent and timely in giving him his medicine.  Because if the medicine helps us avoid the trauma of watching my son seize and having his brain wig out, then guess what, 2mL twice a day should not be that difficult.  And yes I am human, I'm not perfect, but there is something about watching your child seize, that if you know it could have been avoided, that just plain sucks.  It makes you feel guilty knowing you could have done something soooo simple to avoid the consequence.

Just in case, I've set an alarm on my phone for his dosing times and I'm considering getting one of those baby video monitors for his room. Maybe not for use all the time, but it would definitely make me feel better I think.   My guess is he slept in so late the morning of the seizures due to having more seizures earlier in the morning.  Poor little dude.  I guess the most common time to have a seizure is in the morning and if he missed his night dose, then he missed the leveling off it gives him to avoid those.  Lovely.

I'm relieved he's handling the EEG equipment so well, I think that would have made things so much worse.  I'm anxious to take all of it off...well, let me rephrase. I am not looking forward to using the remover solution, which they tell me, removes varnish off of wood.  Nice. And I'm putting this on my child's head.    I'm not looking forward to that, but I am looking forward to having a hearing boy again and taking him to the park for some fun.

Now, I'm going to try and get another hour of sleep, before I get up and help my husband pack for his trip.

I hope its a quiet weekend.

Thursday, August 18, 2011

Tuesday's 10

1. I've been up since 3am, so I might as well blog, right?  Blame it on way too many Diet Coke's yesterday/last night and the fact that I heard our German Shepherd stuck under our new bed-again.  Seriously.  What possesses him to end up under the bed, when he can't get out?  I'm still not sure how he got under there.

2. My husband is asleep next to me, yet his Facebook status shows him online.  Hm.  Facebooking in your sleep?  That's a new one.

3.  This weekend is officially "Buy AJ his iPad 2 weekend".  Jeremy and I are so excited.  We spent over an hour at the Apple Store a few weeks ago playing with the iPads on display.  Seriously.  What else is there to do while waiting for your table at P.F.Changs?  We were both impressed that all of the iPads had multiple augmentative communication systems for users to play around with.  If I would have let him, I'm pretty sure Jer would have spent the evening on the Puzzle app.  Too cute.  His Otterbox just came for his iPad.  It made me cry.  We are beyond anxious to get our hands on this amazing piece of technology and open a new world of possibilities for our little dude.

4.  Our little dude, who is little, and isn't little.  At last week's neurology appointment, AJ weighed in at 26 lbs.  Say what?  NOT COOL.  Leave it to AJ to worry me a completely different body system while were at an appointment for his brain.  On the flip side, he is now 37 inches tall.  37 inches tall!  He's always grown up instead of out. But this is a little ridiculous!  The boy is all legs.  His neurologist was worried, because his last weigh-in (at urgent care) was 30lbs.  Well, it was an estimate.  He wasn't actually weighed that day. That eased things a bit, but the 26lbs is still a cause for concern, as it would mean he's only gained a pound in over a year.  We have an appointment with his GI doc next week and I'm sick just thinking about it.  I'm already feeling guilty in a million ways about his weight.  What are we not doing that we should be?  Sigh.

5.  Speaking of his brain...we're still on the same dose of Keppra, 2mL twice a day.  It is hard to say if this episode while vomiting a few weeks back was him being lethargic due to the illness, or true seizures.  His neurologist is suspicious of clinically silent seizures.  Meaning, is AJ have seizures and we don't know about it.  Like, as in, no symptoms.  So, we're doing a 24 hour EEG.  That should be fun.  A company will send a technician out to hook him up here at home, then wrap his head like a mummy, complete with cords down his back running into a backpack.  Then its my job to keep this on his for a full 24 hours.  I can already tell you, this is NOT going to go well.  But, I am hoping we get at least a few hours reading to see whats going on with the little guys noggin.  And, his neurologist and his nurse were thrilled to hear we were getting him an iPad, it seems these things are working wonders with their patients!

6.  At the suggestion of another wise special needs Mommy, I found an awesome baby mirror type-thing for the car.  I've been hyper about watching AJ in the car.  Like.a.hawk.  As a result, my neck was getting a bit funky from cranking my head in his direction a million times a day.  The mirror is about half the size of my rear-view car mirror and clips nicely onto my visor.  It also has a ball mechanism, so I can rotate and move it around to just the right angle.  LOVE.  Yesterday was our first day using it, and my neck was patting me on the back the whole ride.  I could see him, and I felt a bit better.

7.  Our new insurance kicked in a few weeks ago and much to our disappointment, PT and OT were denied. On the up side, feeding was approved.  Sigh.  AJ's PT and I made the decision to keep his pool therapy going, every other week, until September at this point.  We'll take it on a month to month basis.  He's amazing in the pool.  You should seriously see this kids face when we turn the corner for the community pool.  He lights up like a Christmas tree.  Totally adorable.

8. I'm turning 30 this week.  A bit of shock and awe in that statement.  I'm definitely ready for my 20s to be over.  I'm hoping for that magic fairy dust that declares "I don't care what people think" and "Do what is best for you".  Anyone have a pouch they are willing to share?  Seriously.  My 20s were packed full of uncertainty.    While I do not, in the least bit, regret being what is considered a "young mom" at 25, being a young special needs parents has taken its toll on me.  I look in the mirror every day and feel 40.  I guess that's what stress does.  Does anyone have botox or lipo in their pouch too?

9.  AJ was finally fitted for his new UCB's and his night splint yesterday.  He was casted 3 times yesterday.  NOT a happy boy.  I don't blame him, but there comes a point where his wailing and carrying on brings a ball of stress and a sense of discomfort to the space and people around him.  Hopefully they'll come in soon!

10. We are finally moved and getting settled into our new home.  After 2.5 years of talking, talking, and talking then trying to move, we've finally made it.  Leaving our first home was bittersweet, and we both experienced emotions this week that were unexpected.   AJ has adjusted remarkably well.  Out of all the things I thought of that might upset him, none of it did.  What did though, was the noise.  We moved from country to city living.  I truly didn't realize how quiet it was by us until we moved.  If you think about it-it is amazing that the sounds bother my Deaf child.  I mean, seriously?  That is amazing.  But he wasn't thinking it was so amazing.  It has helped to sit on the front porch and watch the "noises" as they go by.  Hearing them in the backyard, he was confused and just upset by the sounds.  Pointing out what the things are has helped, as well as exposing him to the sound difference between the front and backyard.  We LOVE having a backyard.  LOVE IT. We did it all for our little man, and couldn't be happier.

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