January 31, 2007

In honor of today, my Mom's birthday, I dedicate this entry to her...the coolest Grandma Jakob could ever ask for...

The toughest part of living away from home (home is where I grew up...and I'll always call it home), is that my parents are missing out on a lot of stuff that I know they would find hysterical and endearing. They dig their grandson, just the way he is. Every day, Jakob does at least 5 things that would make Mom and Dad giggle. Jakob's funny...very funny...if you get his sense of humor. Mom and Dad get it. Jakob and I are very lucky.

Had Mom been here for Jakob's discovery of the beauty of fresh batteries, she'd have been bent over. One of Jakob's Christmas toys...(a bear that tilts his head side to side and reads "Twas the Night Before Christmas") was starting to read slower...and slower...and slower. So in a moment of brilliance, I decided to teach him the concept of new batteries. I was smart enough to not let him see me screw off the cover for the batteries, but I did show him that I took out the "old" batteries and put in the "new" batteries. He was amazed at how immediately following this procedure, the bear was talking at full-speed again. Well..........I need to mention that the bear is not the only battery-operated toy that he has full access to... So now, anytime one of these toys starts to sloooowww down, he grabs the toy and takes me to the kitchen drawer that he saw me get the batteries out of, and he gives me this "please, fix it, Mom, please...I can't live like this, Mom" look. Ya know the one...the one I'm a sucker for every time.

I ran out of batteries the other day. That wasn't good. I scrambled, found some battery-operated toys that he wasn't playing with and did a swap. Of course those batteries only had about half-lives left in them. So as those batteries were dying, I was running around yanking batteries out of every spare toy I could find...I had to have back-up. I'm going through batteries like nobody's business. Time to go to Sam's Club...great deals on batteries.

It'a all my fault and now I'm paying for it. Never should have shown him the beauty of new batteries...

Stuff like that happens all the time. He catches me doing something and I'll be darned if he doesn't jump right in. Of course, when I want him to do something, I ain't got a shot, but if I'm plunging the toilet and he sees me doing that...the plunger becomes his new favorite toy.

It's fair to say that I'm always on my toes and there's never a dull moment.

I think my parents were granted the wish that every parent wishes for...that their child gets a child just like them or even a little bit ornerier...

Once again...thanks Grandma and Grandpa...

Jakob's Journal

Panic is over. Everybody's fine. If Jakob's having seizures, they're small. We'll figure it out and do whatever we gotta do.

Panic is unavoidable...how long the panic lasts is up to me...and it's over, for now.

Jakob has been on a roll for awhile. There's no doubt that he's understanding almost everything that he's hearing. He's following directions (when he wants to) and really making his feelings known when he doesn't agree...

Still not any words consistently (except for "up"), but he knows what he wants to say. He just can't get it out...but he's trying so hard. Especially when he's upset. I can just see it coming...he gets frustarted over something, he tries to communicate what he wants, he can't, that makes him more frustrated...it can go bad fast. Luckily, I have very few epidodes with him. It's so nice to feel like I have a handle on him...there are so many memories from when it wasn't so easy. Jakob's team of doctors and therapists believe Jakob has a case of "true apraxia".

He's been a happy little booger...showing off every chance he gets. My parents bought him a piano for Christmas...a real piano. It's a fabulous addition to the Moose Room. He generally practices in the morning and again in the evening. "Twinkle Twinkle Little Star" and chopsticks are his favorites. He also enjoys playing along with videos....when there's music in the video, he plays along. When the music stops and they start talking, he stops. It's quite amusing. He loves playing piano with Grandma the most. He'll sit in there with her for a long time. She shows him a song and he can play it...sort of. He's less enthusiastic about my playing...apparently, I'm not as good as Grandma. I'm definitely regretting not practicing more when I was kid. 6 years of lessons...I haven't reatined a lot. It's coming back to me slowly, but it won't take long for Jakob to catch up.

Over the holidays, Jakob was perfect. I really enjoyed being here when he got up in the morning. He's a pretty sweet kid in the morning. He's so much like me...he wakes up kinda slow. He needs a little bit of time to ease into his day. He'll come around when he's darn good and ready and when he does, it'll be cute and sweet.

He opened presents with a lot more interest this year. I've got it figured out...he will like 2 out of every 7 gifts. That's about right...for every 7 toys I buy, he likes 2 of them. Huge improvement from 2 years ago when it was about 1 in 20...I love forward progress!!

Jakob even went to church on Christmas Eve with Grandma, Aunt Sandy and me. He was funny...he was a little hesitant getting out of the car but once he saw other kids, he grabbed Sandy's hand and practically dragged her in. He sat through the whole service and he was taking it all in. He especially liked watching the guy play the piano. We went to a children's service and they brought in live animals. I tried to get him to feed the goat, he wasn't overly thrilled about it but he didn't get mad when I put food in his hand and held it up to the goat's mouth. He did make a pretty funny face though...

Jakob's Journal

Ok. I really wanted to do an entry entitled "2006, A Year in Review"...and I will, but there's a more pressing matter that I feel the need to write about first......

Jakob may be having seizures. He's having the tests done in mid-February so we'll know more then. So that's five weeks until the test, 6 weeks before we know the results. I've been suffering from occasional nausea.

Jakob was scheduled to have one short test in December. I'd made the appointment as a precautionary measure after hearing some stories about other kids like Jakob. We ended up having to cancel that appointment...Jakob was sick and his sleep was all messed up. It wouldn't have been pretty. And since I really hadn't seen anything that led me to suspect any seizures, I wasn't that worried about waiting for the longer test.

Over the past couple of weeks, while I was on vacation and with Jakob most of the day, I noticed a few different behaviors...a lot of eye rubbing, blinking, awkward mouth movements. It was happening so fast, I just wrote it off to something else...maybe a stim, a hair was in his eye, it's his sinuses since he's sick. I had a reasonable explanation for all of it.

But then...while he was in OT, his therapist saw something that she believed may have been a seizure. Jakob had just gotten off a swing and was walking with her when he stopped. He was blinking fast, flapping his jaw and wringing his fists. It lasted 3-5 seconds, he stopped and leaned against her for a moment and then did it again for another 3-5 seconds. She came upstairs and utterred one of my favorite phrases, "Now Jenn, I don't want you to panic"...(yeah, right). She told me the story and I calmly whipsered my favorite 4-letter word...

Since that happened, I'm watching him like a hawk and remembering stuff from all the way back when he was an infant. Memories just flash...I remember when he was under a year old...I can't remember if he was sick or if it was right after immunizations....but I was holding him and he shiverred...for just a second. Then he did it one more time. I remember it freaking me out. But everything freaked me out when he was that little and it was as if he just got a chill. I mean, I do that. Sometimes, outa nowhere, I'll have a chill run up my spine. So, I wrote it off to that. And I remember keeping a close eye on him after that and I never saw it happen again. Maybe that was a seizure...

I've only seen one thing since she said "don't panic" that looked kinda different. It was real quick...he kinda cocked his head, looked out of the corner of his eye, blinked a lot and opened his mouth as if his ear had water in it. As soon as it started, I grabbed his face and it was already over. Maybe that was a seizure. I dunno...6 weeks until we get the results.

I never believed that Jakob was having seizures...I have to say that I'm a little shocked by all of this. And part of me feels like a real moron. What if he's been having seizures from Day 1 and I never had a clue? What if some or all of his stimming behaviors are actually seizures?? What if the seizures are causing his speech delay and had I figured out that he was having seizures 2 years ago, he'd be speaking now??? I could keep going...but the one question that keeps popping in my head....What if it's a brain tumor? That one's the worst.

Then I spiral into...What caused this? Something that happened during my pregnancy or something we did along the way? Why is it showing up now? A decision I made is somehow to blame...

I shouldn't have taken the sedative for the surgery that put me on bedrest, I shouldn't have had the RH factor shot, all the meds to stop the contractions, I shouldn't have let them use suction during delivery, I shouldn't have gotten his immunizations, all the prescriptions he was on for ear infections and acid reflux...and on and on...

It's the guilt thing. It will never go away. If there's a mom out there who swears she never questions if she's to blame, I really wanna meet her. And it's not even a matter of believing that I'm to blame, it's the question that maybe I am...never knowing for sure and nothing I can do about it now. But it's always there. It's hard to stop thoughts from popping into my head. Somebody make the voices stop...(just kidding).

That's when I usually try to stop my brain from running and be rational. That's not always easy...but I do my best. Sometimes I start with a quote from Psychic Suzanna ..."The past has no power and the future is changeable. The power is in this moment and you". Sometimes it works, sometimes not so much. Bottom line...all I can do is watch for anything unusual. That's it right now. So I gotta do just that and "relax", "believe" and have "faith". (All my signs are still up...and I've added a few more).

I've contacted his fabulous doctor and she calmed my nerves. I thought it was such a great response that I wanted to share some of it thinking it may help other Moms out there...(I hope she doesn't mind)...

"The funny thing about seizures is that unless they are very prolonged, or someone is driving or swimming or participating in some kind of activity like that,
they are not dangerous. It worries us all to think a child is having a seizure, but many kids have small seizures, sometimes frequently, without any "damage" to them.

What I want you to look for (but don't make yourself crazy!) are any episodes where he has repetitive movement that you can't stop or disrupt. Some of these episodes can be very brief, so it can be hard to
determine if you could have stopped it because it's already over! Staring spells can be hard to interpret because so many kids have them, but again when you can't interrupt it and he seems really out of it,
that is more suggestive of a seizure.

There are some times during which a child's seizure threshhold can be lowered (meaning if they have a risk for seizures anyway, the risk increases) such as during illness/fever, certain growth periods
(adolescence) or even stress, depending on the child.

Keep me posted. I am glad we are doing the longer EEG. If he keeps doing this in OT, see if you can capture it on video."

She's a wonderful doctor...I think we'll keep her...

I've alerted all of Jakob's therapists and they're on the lookout for anything suspicious. I've been getting reports from everybody...so far we've had some sightings but no major accounts. Some blinking and a little eye-rolling but nothing major.

I also remind myself that if he's having seizures, once medicated, he may be better able to speak. Now that would be a blessing. What if we get him on meds and he starts talking? Wow, I think I'd break down in tears. So...in the end, this could be a good thing. Everything happens for a reason, right? We'll know more in 6 weeks.

My rational moments are becoming more frequent and the panic attacks are dwindling.

One more possible explanation for all of this is something my Mom suggested..."Maybe he's just constipated." Thanks, Grandma...