Angelman Syndrome, Life as an Angel: Update

Monday, February 08, 2010

Update

Well, its been a little while since we posted, so though that it was time,lol.Things here are teetering between normal chaos, and uncertainty. Brady continues to be a monkey on his good days, but on the bad days, I have to check his cute little head for horns! No really, we are seeing some odd behaviors, and suspect its probably seizure related. He is down from 12mls of phenobarb daily, to 4mls daily; he continues to take the depakene. We felt like decreasing the pheno would cause some unwanted activity, but we have to get him off of this medicine. We will probably be adding another, less potent med once the pheno is gone. Since Brady had gone through so much in the hospital, we had to bring him home on the pheno, and patiently wait til the right time to try and remove it; thank goodness the time has come! The pheno makes him so irritable and aggressive, just as we figured it would. We have only seen two seizures since his hospitalization, and these were very mild seizures thank goodness.
Not sure if I posted since our last EEG, but everything went great! His EEG showed some signs of electrical activity, but only two visible seizures (basically means that he is no longer in status). The doctor was very pleased with Brady's progress. He even made a trip down to the second floor, where we were having the EEG done, to have a look at the EEG while it was in progress. He has been very concerned about Brady, as have we all. We have fired 6 neuros before we finally found one who was capable of showing compassion for our sweet boy. I truly believe that if we had not found our current neuro, there is a good chance Brady would not be with us today. Soooooo, we thank God for looking out for our little guy and giving us the strength and courage to forge ahead.
Anyway enough of my ramblings, now on to comedy hour, hehe. . .
Brady has been having his monkey moments lately. He is picking on signs fairly easy. When I watch him use the signs that he knows, it just shows me how much personality this boy has,lol. Last night, he decided to flip the electric heater over and use it as a stepping stool. I told him "Brady get down", he shook his head "no". I again said in a stern voice "Brady get down!" and again he shook his head "no". So I said "Brady would like to get in trouble", he replies by shaking his head "yes" and giggling. So trying not to bust out laughing I gave him my mean look, then he starts signing "sorry" and climbs down,lol lol. He is such a little stinker!!
So another incident, which is totally my fault, but too funny! We have 5 beautiful little Saint Bernard puppies yesterday, so mom and pups are held up in the guest bathroom. Anyway I took Brady in to see the pups last night and Brady immediately starts signing "hungry/eat". I said "oh no Brady, you cant eat the puppies, you must mean to sign "dog/puppy". Well Brady doesn't skip a beat and starts signing "dog/puppy". After we came back to the den and I started thinking, it hit me that he was wanting to eat the puppies, he was saying that they were eating, and they were!!!!! I did apologize to Brady and explained to him that he had to be patient with his dumb parents, were all hes got,lol lol.
So anyway, this morning I got up before Brady and done about here at home. I always keep my bathroom doors locked, because little stinker will flood the house (we know this from experience). So when I went back in to check Brady, the lights was on, the radio on, dads CPAP machine running full force, but no Brady. The bathroom door was standing wide open and Brady was sitting at the head of the tub, just about to turn the water on. He had unlocked the bathroom door, from the outside, and was going to take a bath! He was just sitting there quiet as a mouse, while I yelled for him. Thank goodness we were able to avert any disasters and he did get a supervised bath. But after he got out and I was getting him ready for school, he did manage to reach over and grab one of his seizure meds, get the childproof cap off and pour a quarter of the medicine out before I could get to him. I think that we are going start hiring Brady out to be a child safety tester for these multi million dollar corps like Fisher price and Gray co :)
Anyway guess that's about it for now. Hope everyone is having a very blessed day. Remember to keep all of our sweet Angels in your thoughts and prayers, as many are suffering from major illness at this time: Taylor and Hunter, sick with pneumonia (getting better), Sean in non convulsive status (getting better, a little Angel in Las Vegas who pulled a tv on his head and had to have surgery on his face, and then sweet Maggie in suspected non convulsive status. Pray for our Angel families who find themselves emotionally drained from dealing with some of the issues that come along with raising these very special children. Lord help us all to remember that so many good times will follow the bad times, we just have to keep the faith; we have to remember that every little smile and giggle we receive from our little ones, gives us the strength and courage to face the bad times.

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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