Will they ever stop?

The seizures continue to strike!  They are hitting EVERY time Beau sleeps.  Over the last week they have only affected his left side during the seizure.  We seem to go in spurts of right leg one week then left leg next week.  His left leg is his stronger leg, but now it is just as weak as the right leg because of the daily seizures. When he walks it's very cautious and stiff looking.  It's breaking our heart to see this.  The one drug, carbamazepine was increased a lot lately but it clearly has no effect on the seizures.  Today started our first day on depakote.  For right now he is on keppra, depakote, and carbamazepine.  He was weaned off of the dilantin because he was on such a low dose and the neurologist didn't feel it was effective.  As of right now, I'm not sure when or if they will completely take him off of the carbamazepine.  I just have my instructions for this week.  It shows a decrease in the carbamazepine but not a complete removal of it yet.  I hope, for Beau's sake we can figure this out.  It's so hard to see what the drugs and the seizures do to his little body and yet somehow, through it all, he squeels and smiles.  I pray that one day - and hopefully one day soon - Mr. Beau gets some relief.  I know God takes good care of him so I just have to put my faith in that and in our neurologist.

School for Sale - Be an advocate!

I wanted to talk about is being the best advocate you can be for your child.  This has been a role that I have stepped into quite easily.  I guess I come off like a mama bear when it comes Beau and what is in his best interest as a special needs child.  I have attached a link (please click on School for Sale) to a news story that I was a part of (I contacted the media) with regard to a situation happening here in Waterloo and the school that Beau attends.  The actual building is owned by the Waterloo School District but it is leased by the AEA 267.  It's quite long and difficult to explain it all but you can get the general idea by listening to the news story.  Let's just say they haven't heard the last of me.  It aired last night and I have received numerous phone calls today of people in support of my efforts and one from a director with the Waterloo School District.  It tells me Waterloo School District saw it - that makes my day :)  Never be afraid to stand up, be heard and advocate!

School for Sale

Even more seizures.....

Beau continues to have seizures every time he sleeps.  It hardly seems fair for him.  We are going through a process of increasing the dose of one of his medications, the carbamazepine, but it still isn't doing the trick.  After a call to his neurologist today, I'm pretty sure we will be trying a new drug starting next week.  There has to be something that will give Mr. Beau better control.  We shall see what the weekend brings for him - more of the same I'm afraid.

No matter what - this handsome little boy smiles through it all.  God I love him!!

More seizures....

So after another big up in Beau's medication about 2 weeks ago, he has had more seizures.  He had a seizure this past Friday night which lasted about one minute and involved his left leg.  Last night he had 2 seizures.  The first one involved just his right hand and it lasted about 3 minutes.  He had a 4 minute break and then the 2nd seizure started and this one involved his left leg.  It only lasted about 1 1/2 minutes.  It's amazing to me how he is on so much medication and such high doses and it doesn't keep the seizures under control.  It's hard to understand why all of the sudden these past couple months his body just isn't responding to the drugs.  He went for a good long time without seizure activity and now it seems never ending.  The process of drug adjustments and changes seems to be so tedious - as it should be - but it's so hard because as a parent you want to "fix" the problem immediately!  I have put my full faith in our neurologist and pray that she finds the right "fix" for Beau Beau. 

The boy loves football....

This last Saturday we were invited to attend the UNI homecoming football game in Cedar Falls.  My brother had extra tickets and was kind enough to invite our family to attend the game.  We have known for some time now that Beau is quite fond of football but we never knew how he'd do watching a live game as opposed to just watching one on TV.  We weren't sure if the noise in the dome would scare him or if he'd do OK.  We never should've worried because as you can tell, this little boy was in heaven..........

If this doesn't show pure joy and excitement, I'm not sure what does!  We now have a true Panther fan on our hands.  A few days after the game he even spotted the Panther logo in a newspaper ad and went nuts signing football - he had totally remembered the logo and made the connection.  Just another reminder to me how much is going on in his brain!

All in all, Beau had a great time at the game and when we came home he wanted to play ball like crazy!  Unfortunately his night ended with a seizure during sleep.  It lasted 5 minutes and ended on it's own, so we didn't have to give him a rescue drug.  I guess he'd had so much excitement and fun his brain couldn't slow down.  Even still, we'll be taking him to another game in November.  He deserves to have fun and love all great things that life has to offer.  Go Panthers!!

Halloween Memories

Since October 31st is fast approaching, I was feeling very reminiscent about some of the great Halloween memories we have had with Beau.  I'm quite partial, but I think he's a pretty cute little boy and I wanted share some pictures of our little man from the past 3 years.

Here's Beau in 2008 as a monkey!

 Here's Beau in 2009 as Yoda!

 Here's Beau in 2010 as Batman!

Pictures bring back such great memories! This year he has two costumes.  I think he will be Superman at school and a football player at home.  After all, Beau is quite the Superman to go through all he's been through and come out so strong.  And he is obsessed with football so the football player seems like an obvious choice!  Looking forward to some great pictures this Halloween and some even better memories.

A strange event...

Last evening something strange happened with Beau.  Shortly before we sat down to eat supper, Beau was playing in the living room just off the kitchen while I was making supper.  Andy and I were there and Beau had been playing great and walking around following Andy.  All the sudden it was like someone had flipped a switch.  Beau started to whimper and then he fell down.  It quickly became apparent that he didn't have the use/feeling of his right leg.  We'd stand him up and immediately catch him as his right leg wouldn't support him at all.  We laid him down and Andy tried to manipulate both legs trying to get Beau to lift them up and kick at Andy's hands.  Beau easily lifted his left leg up high and pushed back on Andy's hand.  He couldn't get his right leg to raise even a quarter of the distance his left leg did and you could tell he didn't know what it was doing.  He was quite scared - as anyone would be when they suddenly lose function of a limb.  To avoid scaring him anymore, we set him in his chair for dinner.  He ate pretty well but still whimpered periodically throughout the meal.  Beau isn't a cranky kid so we knew something wasn't right.  After dinner I held him and took him back into the living room to play with him and his toys.  He has a table he likes to play at and normally he will walk around it.  He crawled around the table being very cautious.  I got him to stand up to look out the window and he pulled himself up and his right leg stayed out to the side and behind him.  It was holding him better but still not moving like it should.  Over the next ten minutes it seemed that the function slowly came back and eventually it was as if the event had never occurred.  The whole event from start to finish lasted about 40 minutes. 

I left a message this morning for our neurologist.  The event itself was scary but it really doesn't surprise me since we know that there is an abnormality in the brain near the right leg.  In fact, knowing that piece of information is what kept me calm and didn't completely freak us out.  It's worrisome though that this is happening because I don't believe that this has ever happened to Beau before.  The brain is such an amazing machine and every day I learn more and more about how much control it has. 

Beau didn't sleep well last night either.  He tossed and turned for the first couple hours of sleep and we finally got to sleep around 12:30.  He seemed to have a few leg movements but they all seemed benign.  He whimpered quite a bit like he couldn't get comfortable.  It's moments like these that make me wish so terribly that Beau could talk and could tell me what hurts or what he is experiencing.