What does a cow say?

It seems like a simple question, right?  What does a cow say?  It seems like a very simple question for a near 4 year old child, but in the world of P-ACC it isn't always so simple. 

Some sort of miracle has happened in the last few weeks (knock on wood).  Beau, after being removed from one of his anti-seizure drugs (Tegretol) and adding a new one (Depakote) it's as if we have a revitalized little boy.  We have been seizure free for a couple weeks and it's as if this new drug is slowing down all of the rapid electrical firings Beau was having in his brain.  Again, I hate to even type this for fear we'll be jinxed!  Everyone has noticed it; family, teachers, therapists.  He isn't so tired all of the time and he no longer takes 3 hour naps in the afternoon.  He also no longer struggles to wake up in the morning after 10 hours of sleep.  His walking has improved, he's attempting to run more and trying really hard to jump.  His teachers notice how much clearer he seems and how it appears as if information is "going in" and he's "getting it".  He may even be able to start attending school full days. 

A week ago we started to notice that Beau seemed to really be responding to pictures of cows and would really notice them.  Not only that, it seemed like he might be saying "moooo" when he saw them.  I brushed it off at first thinking that "nah that can't be what he's saying".  It quickly became obvious though, that it was EXACTLY what he was saying.  Somehow, after years of us making animal sounds and teachers making animal sounds, something just "clicked" and now Beau officially knows what a cow says and can say it.

This proud mama is proud of her "mooing" son.  It has been mooosic to our ears!

Halloween 2011

Beau is obsessed with football so it seemed only fitting that he go as a football player this year!

More than going out and collecting candy, Beau loved waiting at the door and handing out candy to everybody else.  It was quite cute to watch!

The Diastat works...

Over the past 2 weeks Beau has been going through major medication changes.  It's no wonder then that he had a long seizure last Saturday night.  It was rough to see another prolonged seizure but we did give him the Diastat for the first time and it did stop the seizure after about 6-7 minutes. Total, the seizure lasted about 12-13 minutes.  It was another quiet seizure that began with drool coming out of the corner of Beau's mouth.  From there it became full on chewing, drooling and his left leg began jerking.  It took so much out of him.  He woke up several times throughout the night, clearly having a headache from the seizure.  I gave him ibuprofen in the middle of the night and finally he was able to catch a little sleep.  Since Saturday though, we are completely off of the Tegretol and are on Keppra and Depakote.  So far (knock on wood) the new combination is keeping the seizures under control. 

When I spoke with the neurologist I discussed my concerns over the fact that lately his seizures had been affecting his left leg and not his right leg.  Knowing that there is a definite abnormality on the left side of the brain, we expect the right side of the body to be affected.  It worries me though, that he's having all of these problems with his left side.  She isn't certain at this point in time, but believes that it could just be affecting the left leg, like his right leg, because the abnormality is so close to the midline.  If that's not the case, and there is an abnormality on the right side of the brain as well, we may not have the option of surgery down the road.  Ugh.  This is all so confusing and I guess there's no use worrying about what we don't fully know yet.  More tests would provide us with those answers.  For now, we give time for the Depakote to work it's magic with the Keppra and we hope for no seizures.  Our next appointment with the neurologist is December 7th where I think we'll be able to learn a lot more about her plan for Beau.  We're a strong family and we can get through anything!

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.