Angelman Syndrome, Life as an Angel

Saturday, August 23, 2008

Oh it has been a day here!!! Brady stayed up until sometime after 3am Friday morning. I tried to lay down with him,but leg cramps kept me from sleeping. By 5am I noticed Brady crying out and picking at his right ear,not the one that has been bleeding for a month now. I turned the light on to find blood coming out of this ear now! Then I noticed a foul odor coming from the left ear,the one that had been bleeding before,so apparently is has gotten infected. He now has two bad ears,and is in total misery at this point. He has fussed all night long, no matter what we have done for him, we cant seem to make him comfortable. Anyway I called the doc first thing this morning and he told me that we need to have Brady at the surgery center at 6:15 AM, Monday morning. They are going to remove his tubes,as this seems to be what is causing the problems. Im not sure why both ears decided to flair up all at once,but it has us very concerned. Since he has the VNS, infections are a very big deal,as it can get in the VNS leads and cause serious problems,not to mention the possibility of having to have the VNS removed. So the doc called in an antibiotic which we started today. If things get worse tomorrow our ped is going to meet us at te hospital for a shot. Otherwise we wait til Monday for the surgery. He does have a fever right now.
I have been on the phone with the surgery center,the docs office, and people calling to check on Brady, all day. Then I had to go get his med. Well then I get a phone call that my mom has been admitted to the hospital with chest pains, so I went tonight to spend some time with her at the hospital. I hope and pray that she will be ok, I just feel so bad that shes up there at the hospital all by herself tonight:(
Also, Peyton is broke out from head to toe, with something that seems to be a measle type rash,but hes feeling better,so I think hes past the worst at least.
My poor little Brady is stumbling around like a drunk person and is so unhappy,I hate seeing him like this. This is the first time since the VNS,that I really am worried we will see seizures. I pray that we dont see any,and that we can get the ears back to normal and that is walking improves after this.
Anyways I know that things are going to be just fine, tomorrow is another day I suppose. This is just a bump in the road. I refuse to get discouraged, things have been going to well here for that. Im just so thankful for all the good things in our lives. Sorry if this post is all over the place, I have had 2hrs or less of sleep today,and Im totally exhausted. Im going to lay down on the couch with my sweet boy now.
I will keep ya posted on how things go.

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What is Angelman Syndrome?

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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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