Connor's First EEG

Today we had Connors first EEG.

The doctor ordered a sleep deprived test... This was especially hard since we had to not only keep our son up until midnight the night before, but also wake him up at 5 am.  He was not a happy camper!

As you could probably guess, we were ALL sleep deprived!  But we made it to the hospital.

As we got into the lobby our son was anything but sleep deprived as he caught his second wind.

This worried me because we were hoping he'd be EXTRA tired so he wouldn't care about the mass amount of wires around his head.  It did make me smile though :)

We were called to the back and luckily they already knew to have cartoons playing.  

He sat on Trevs lap as the Doctor and I were trying to convince him these wires weren't that bad.

We were playing with them and let him even "attach" one to my head.  He had fun :)

The Doctor kept warning me that he was just too young and wouldn't sit still long enough to do all the wires and to do the test... He estimated it would take 2 hours since we had to go extra slow.

Connor took all of us by surprised and even though he cried and resisted a few times, he still did great and let the Doctor finish in less than 30 minutes!

They hooked Connor up to the machine and begun the test.  Luckily for most of it we could just lay together and watch TV.  As we were all sleep deprived we tried SO hard not to fall asleep on that huge bed.  It was way too comfy for our own good.

For the final minutes of the test they had to run a strobe light over Connor.  He absolutely HATED it as any kid would, and cried hysterically.  

It was only natural for me to comfort him since I already felt HORRIBLE, but the Doctor ordered me to let him cry, for it would help get better results.  The was way harder than it seemed.

After the test was over my son JUMPED right up and into Trevor's arms, for at this point he was more than ready to head home.  [We all were].

We go Monday afternoon to get the results from both the EEG and MRI [even though we did receive news the MRI thankfully came back normal!]  

When we got home Connor and I both fell asleep right away [and for what seemed like forever.]

When we gave Connor his bath it took a while to get all that jelly out of his hair [poor guy]. 

I believe there's still a little stuck in there haha

We also had to get the "stickies" off his belly.  That was a challenge in itself.

I was worried about him in the beginning, how this would affect him and us.  He's done so well and is my inspiration every single day.  He is definitely one tough cookie :)

First Tests COMPLETED

It's been a while since I've lasted updated and a LOT has happened.

Connor is doing AMAZING on his medicine.  No seizures that I know of which is great.

Trevor came home from deployment and we're still adjusting to everything.

This has all caused some hidden stresses in our lives and we are still trying to cope.

It's hard, scary, frustrating and sometimes very painful...

Connor's MRI was very hard for me... He had to get sedated by anesthetics.

When the doctor called us back he let me hold him while they put the mask over his face.

I didn't know I had to wrap my leg over his body and hold down his arms... 

I was trying so hard to stay strong and let him know it's okay and that mommy was here, but all I could do is let out a whisper being that I was on the edge of bursting into tears. 

I caught a whiff of the anesthetic and immediately felt nauseous.  It was all too much for me.

Finally he stopped struggling, screaming and crying, and fell right to sleep.

I didn't get very far in that hallway before I lost it in Trevor's arms.

It was about an hour and a half until I saw them wheel a huge bed with a little body through the lobby.

I followed the nurse and my son up the elevator and to the recovery room.

I had to wait to enter the recovery room until after he woke up, so Trev and I waited nervously..

I pictured him to be screaming and crying for mommy and being so afraid, so I couldn't help but burst into tears and into a laugh when I saw him sitting up in the bed with a huge popsicle.

He was so weak and still a bit sleepy so this huge popsicle was at times too heavy for him to hold.

He's such a brave soul and I admire him every day...

We went home and to my surprise my friend Vic brought him over a HUGE Car's cupcake.

He thoroughly enjoyed this treat, and it was much deserved...

I'm so glad I have such great friends here to help keep me grounded.

I'm not sure what I would do without them :)

Day 2 of Keppra

What a stressful week.  

After finding out my sons diagnosis, getting his medicine, him having a cold and just tough decision making, I decided it's time to take a break and start our vacation early.

We are now on day 2 of his medicine, and the signs of it working isn't visible.  The doctor warned me he will be very irritable for the first few days until his little body gets used to it.  However, he has been exceptionally sweet, kind and cuddly!  I'm loving the fact he's been so nice, but I'm not quite sure this is a good thing.  I plan to call his doctor tomorrow to explain his behavior, in hopes of getting a good answer.  I would hate to have to go back down to Balboa to be prescribed a new medicine.  Whatever we need to do for this little guy, we will.  Just wish we could get into our groove already.

We leave for Tracy in a couple days.  It will be nice to have some support from family members and close family friends.  Our journey has just begun, and I'm still in that acceptance phase.  At least now I'm much stronger and have no doubts in my decisions thus far.  I have my husband to back me up 100% and that's all I really need.  I cannot wait until he is home, not too much longer!

The doctor advised me to still go on my planned trip to Europe.  My grandma and I planned this trip a couple years ago [when my husband was still planned to be non-deployable].  The Marine Corps threw us another curve ball, having him deploy a few weeks before last Christmas.  Coincidently Homecoming just fell at the wrong time.. I'm praying that it all works out, but at least there's hope that our little guy will be there to greet his Dad :)  I will need to educate my mom and my dad on how to handle Connor if he does have a seizure.  The medicine should make it so he doesn't, but there's always that chance.  There is nothing you can really do if someone is having a seizure.  Clear the area, make sure there is nothing they can hurt themselves with, talk to them in a calm voice, and do not touch them... I'm comfortable with Connor having his seizures now that I know what they are and how to handle them.  I understand it can be very scary to someone who has never experienced it.

I'm so blessed to have such strong, handsome, loving boys in my life.  Connor will learn so much from his Dad, how to love, how to be a man, how to be independent and hard working... Trevor is the most amazing person, father and man I've ever met... I am so lucky to have him in my life.  

<3

Our New Fight

A month ago I noticed my son was acting differently.

At first I thought he had lock jaw.  He started to gag and then his jaw locked up, making his lips into an "O" shape.  He was just playing a moment ago, and now he is just sitting there, still as can be.  I try to tickle him, shut his mouth, get him to talk, anything.  As he's sitting there, he's just staring at me.  His eyebrows not making any expression at all... Just staring.  I feel his heart, and it's beating so fast.  His eyes start to flood and one single tear drops down his cheek... Still, no expression on his face.  He started to drool a little and struggles to suck it back up.  This episode lasted for well over a minute... A similar episode happened a little over 36 hours prior, however, it lasted less than a minute.  

After over a minute he jumped into my arms and just looked at me.  I had no idea what just happened, but he seemed to be acting normal.  He resumed playing and jumping on the bed.  About 10 minutes later he went back to bed [for at this time it was about 11:30 pm].  On my way to bed I checked on him [like I always do] and noticed he was awake playing.  So I decided to bring him into my bed and watch cartoons for a little while longer before putting him back down.  Thank goodness I did, because that decision alone helped me realize something was truly wrong.  

I called the doctor and explained what happened and how I thought it was probably just lock jaw.  Explaining the behavior to the "T".  The doctor decided to send in an immediate referral to the neurologist, explaining to me that it sounded like he was having a "silent" seizure.  That word alone freaked me out.  How could he have a seizure?  He was just sitting there, non convulsive, and then resumed playing!  I had never experienced anything like it... After waiting 3 weeks for our appointment at the Balboa Naval Hospital it was finally time for some answers...

The Pediatric Neurologist was amazing.  He answered every and any questions I had.  After a little over an hour he diagnosed my son with Epilepsy, saying he has complex-partial seizures.  This is why he is non-convulsive and is completely still when he has his episodes.  I never felt so alone, confused and scared.  I educated myself on Epilepsy... I knew what it was, how to treat it, that my son can live a normal life... I wasn't afraid of "Epilepsy" itself... Because I KNOW everything will be okay.  I was more afraid of the unknown... The scheduled MRI and EEG.. Having my son sedated... The medicine and whether or not it will work... It's all the in betweens until we get into our groove.  All the while my husband is deployed... I never needed him by my side more than I did at that point.

Luckily we can wait to schedule his MRI and EEG until Trevor comes home.  There is no way I can do this by myself... [Or  so I'm thinking..]  Support has been the hardest to come by for me... My family doesn't understand nor can they accept it.  The sooner they do, the sooner than can be able to stand by me instead of doubt me.  The decisions I've had to make thus far have been the TOUGHEST decisions of my life, and I'm doing it alone... With no help, only with question.  Thank goodness for a few good friends to help keep me sane.  I'm ready for my husband to come home...

Last night we started the medicine.  Keppra.  The doctor said it will make him irritable until his body gets used to it.  If it doesn't make him irritable, then that means that the medicine is not working.  Today he woke up completely happy, loving and active... Not sure if this is a good sign, but he's only had one dose so far.  So we will see what happens tomorrow.  Praying that this medicine will work and can control his seizures.  He's such a brave little man... <3

Our New Beginning.

About a month ago a new chapter of our lives began.  Perhaps the hardest chapter we've had to face yet.  To me, my son is a great deal of many things.  He's the most kindest, calmest, loving child I know.  He listens well, obeys commands, plays hard and loves greatly.  Of course, as every two year old, he has his moments... However, those moments do not define him.

A little history about my family;

My husband and I will have been married for 6 years come June 12th.  We met shortly after high school and have had some rough years.  Love and marriage at any age is work, but when you're young I believe it is so much harder.  We fight hard but love harder, which is what keeps us going.  In January of '11 we welcomed our son into this world, Connor.  Shortly thereafter my husband deployed for his 3rd time to one of the most dangerous areas of this world.  During this time my son had severe acid reflux, so nights alone were rough, long and hard.  My husband deployed for a 4th time a few weeks before Christmas in '12, just a little under 2 months before our son turned 2.

As months went on, I noticed my sons development regressed.  He spoke less words and more jargon, turned away more food, and became a little more mean spirited.  I ignored any signs for Speech Therapy for a while... Until I realized there is no harm in help.  He started Speech Therapy about a month ago and is thriving in it.  He is speaking more words, identifying more objects, and understanding more complex commands.  I have no doubt in my mind that Speech Therapy is worth it. Since he is such a picky eater, thus having an unhealthy diet, we decided to get him into Occupational Therapy as well.  [Still waiting on the approved referral].

With my husband gone, I've been able to handle busy weeks with many appointments, all necessary household chores, eating healthy and exercising.  All of this was not too much for me to handle, after all, my husband, Trevor, is coming home soon anyway.  My plate was full, but nothing I haven't dealt with before.  However, one night changed the course of our life as we knew it... &I'm still unsure on how we are going to cope, I just know that we are<3.