What has come to pass.

>> Thursday, September 30, 2010

The last little while has seen an increase in sleeping seizures but no daytime events. Still, it's very disheartening.

He is, however, having the time of his young life. He is gabbering away at us morning and night. He is saying MaMa! And only to me! Very thrilling. So we know that even though he is having multiple (sometimes) events at night they are not really effecting him like they used to. Or so we hope.

We had his IEP yesterday and increased his Speech Therapy.

He had his post op follow up with Dr, Munz and Munz got to hear him say BaBa. He said it was very encouraging that he was trying to talk already and that we should continue to get him increased therapy to help him along. He said he was very pleased with his development.

I almost fell off the chair! He didn't say: In spite of his 'bad brain' (thank you PCMC for THAT little nugget of a saying, gonna store that one in the forefront and throw it out every time Bug says a new word).

It's been a bad summer. Very bad and I just want it to go away. Hopefully, he will be talking more and more and at Christmas he might even enjoy opening presents again. Fingers crossed, but no breath held.

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September 17, 2010

>> Friday, September 17, 2010

2 events. Both Tonic/Clonic.

One was after he had been asleep about an hour and the second was about an hour before he was up for the day.

Important to note: He has NOT had ANY daytime events since his hospital stay. He recovers from his nighttime seizures quickly and starts to 'talk' to me within a few minutes. I get: Momma, Mom, Ma and a smile.

He is home today, no fever but nose is running like crazy. Not even gonna talk about sneezing. Ew.

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September 16, 2010

What a night.

The lad is sick so he had possibly 6 seizures. 2 were Tonic/Clonic and the others were startled awake moments but not rigid. Still, it sucked.

He went to school since he did not have a fever and his nose was running clear. They called a few hours later and made me feel like I sent him to school really sick. He had a low-grade fever and they claimed his nasal discharge had color. I told them: Not when I put him on the Van. There was so more conversation that I ignored and I took the boy home with me. He started to fall asleep in the car but woke up with a vengeance once we had food in front of him.

He was pretty easy to please and made only a small mess later.

Good thing he is cute.

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September 15, 2010

>> Wednesday, September 15, 2010

One minor event.

And he is sick so maybe that is it. Let's hope. It was so small, I would have missed it had I not been holding his hand. Lasted less than 10 seconds and he went right back to sleep.

Even though he has a runny nose and a small cough he is full of energy and gabbing like crazy. He will not leave my face alone and he is slapping a lot too. Which is gross when he is so snotty. Ick.

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September 14, 2010

>> Tuesday, September 14, 2010

No events.

The last two night...no events. They happen to be nights he was taking Lamictal in the evening. It seems that after two days of taking him off the evening Lamictal he will seize and within two days of putting him back on it...he stops. As I said before, but apparently wasn't worth listening to the first 4 times, the Depakote does nothing but make him hyper, the Lamictal is wonderful.

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September 12, 2010

>> Sunday, September 12, 2010

2 events.

Usually it takes at least two days for the Lamictal to reach a high enough level to help and both seizures where after a long restful night of sleep. But he was still asleep.

So far, he has had no daytime seizures since his stay in the hospital. If he has, they were absence only and nothing too major.

Now to get these night time things under control....

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September 11, 2010

>> Saturday, September 11, 2010

3 events. All tonic, decreasing in severity.

We will be adding the nightly Lamictal back to his routine. Last time, it took two days to see a difference so the next few nights might be a nail biter for me.

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September 10, 2010

>> Friday, September 10, 2010

2 maybe 3 events.

I saw two and may have missed one. I did NOT give him his Lamictal like the Doctor wanted and every time I don't, he has seizures at night. UGH. I need to call and ask them if we will be upping his Klonopin and discontinuing the Depakote bringing back the Lamictal.

Gonna need luck on this one.

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September 8, 2010

>> Wednesday, September 8, 2010

No events.

When he came home from school he was incredibly slappy. My kidney's were his favorite target and because of that I am extremely sore at the moment. He doesn't slap because he is angry only, he slaps when he is happy or excited and he was excited to be home. And while I was initially excited about him being home, getting slapped in the lower back multiple times will make anyone less than thrilled.

One might think it's a simple matter of teaching him not to slap. When they child does not speak...how do you accomplish that? We grab his hands and tell him no...tell him to be soft and gentle but when the moment takes him....he forgets and I get slapped. No one remembers this from when he was on the Depakote before, this time I have this Blog and Tay as a witness. So there.

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September 7, 2010

>> Tuesday, September 7, 2010

No events.

Boy was he a handful.

After the great vomit-a-loosa he started out slow and then was ravenous...we had to slow him down. Not as easy as it sounds.

He is now building things to get into cupboards, also climbing all sorts of things for all sorts of reasons. He seems to just be more 'there' than he ever was before. He is playing more creatively and was NOT as interested in Doodle Pro's as he usually is. It's been interesting to watch him, but horrible to contain him.

He still can not understand what certain words mean...he gets No and Stop but only bits and pieces of more complex sentences. And he still has NO impulse control...well...maybe a little because he isn't as all over the place as he has been.

It's slow going...but we are seeing little things that encourage us.

Of course, I still do not dare to hope. At all. I will just take it as it comes.

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Some nights...aren't.

>> Sunday, September 5, 2010

We had eaten Falafel in Pita's for dinner and they were very good. We used a mix for the Falafel and everything else was made by us. Pita included. Bug had three.

Throughout most of the day, Bug had been eating ravenously. I bought him a big bag of chips to keep him snacking so he wouldn't eat off the floor, ground, shelves, shoes, etc...

It came back to haunt me.

I took Megan home and when I returned, at about 11:00pm, Bug's bed was stripped, he was stripped and sleeping, the washer was running and Glenn was playing on his iPod.

I said: Uh oh, Did Bug puke?

Glenn said: Yep, a lot. And I mean a LOT. Not just the Falafel...did he have noodles?

And he continued to puke throughout the night. At about 3AM, 3:22 to be precise, we gave him a Phenergan we had left over from something a few months back, and he puked two more times before going to sleep. At about 5AM I woke up because I thought he was having difficulty and I smelled something foul. With the amount of gas in room (Falafel will do that) I blew it off.

At 6:45 I woke up and the smell was still there and Bug began to heave again. So I helped him and realized he was poopy. Not just a little. And he had pooped while he was on his stomach. It was THE worst diaper I have ever seen. We surmise that, because he did poop bucketloads, his Phenergan was not entirely successful. We will give him a few hours to wake up from the medicine that did get into him and then take him to the Doctor.

Through all of that, he had one seizure. He also had one in the car while we were running around, he was asleep when he did so maybe he is back to sleep-dependent seizures.

The REALLY bad part about last night, isn't that the internal washer drain is clogged so we had to put all the dirty linens/clothes/pillows into the bathtub, it's bad enough that he is miserable, but he was miserable at intervals that allowed for Glenn and I to get into deep sleep before we were jolted awake. I haven't been this drained since he was a baby and waking up every hour. I am sure after we take him to the Doctor, we can take naps. Most stomach meds make him sleep so we might all get relief soon.

However, I think our room will NEVER smell right again. But at least it will get cleaned within an inch of tearing it down. That has to be good, right?

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September 1, 2010

>> Wednesday, September 1, 2010

3 events.

And I am completely bummed. He isn't.

He is happy and eating (a little) and just being a little energetic, OK a lot energetic.

I just do not think the Depakote is helping him AT ALL, in fact, if it is making him hyper, couldn't it be making the seizures worse? Today will be best spent NOT thinking about it, just chilling and praying for the best.

He needs a helmet, he needs an Emfit, he needs programmable push buttons and other communication aides, and I can not buy them right now. Completely feeling like a horrible Mommy. :(

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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