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.