Click Here to Read Brady's Story
Monday, May 23, 2005
Brady's Birthday
Just wanted to let everyone know that Brady turned 3yrs old on Saturday.He had a great b-day.We had him a small party down at Point A park.He really enjoyed himself.He got lots of toys and has really been enjoying himself.Anyway I cant believe that hes already 3yrs old already.Hes growing so fast and looking more and more everyday like a little boy,rather than a baby.I am going to post some birthday pictures on his blog so be sure to check them out.

posted by angelwings @ 9:14 PM
   0 comments
Seizure
Brady had a seizure this weekend.We were fishing and he was playing in a tent that we had him,so that he wouldnt get bug bit.When Craig noticed that he was having a seizure.We were not sure if we had his diastat because we were on Craigs truck.But thank goodness I had my trusty ole therapy bag,which always has distat in it.We gave it to him and it stopped right away.It lasted about 5 minutes or so,and was showing no signs of stopping.But he was fine after the meds and some sleep.Hes been fine ever since.I will keep ya posted.

posted by angelwings @ 1:29 AM
   0 comments
Friday, May 20, 2005
No Seizures!!!
Just wanted to let everyone know that we made it for a whole week and are working on the second week,with no seizures!!!yey!What a great birthday present for Brady!Brady is growing up so fast,he will be turning 3yrs this saturday.We are going to have his birthday party on Saturday.Anyway we are so glad to finally get to share some good news.Brady is doing well on his new meds and is almost up to his full dose.He is adjusting very well.However we do have a little bad news, since Brady is turning 3,the school system is taking over his therapies,so we are loosing a great physical therapist,we love you Joey and hate to see you go.But do expect to see you real soon.At least now you dont have to work the whole time,now you and Brady can just play,you dont have to be the bad guy anymore!At least we are gaining an old friend for PT.We will have Mrs.Susan,we think shes great too,wish we could have both Mr.Joey and Mrs.Susan,how cool would that be!Anyway just wanted to keep everyone up to date on whats going on with Brady.We will keep you all posted.

posted by angelwings @ 12:20 AM
   0 comments
Stop Following me Mom!
Stop following me with that camera mom! Posted by Hello

posted by angelwings @ 12:19 AM
   0 comments
Give me that Camera Mom!
Give me that camera mom! Posted by Hello

posted by angelwings @ 12:13 AM
   0 comments
Good Cheese Curls!
Boy those Cheese curls were good! Posted by Hello

posted by angelwings @ 12:13 AM
   0 comments
Always Time for a good Laugh!
Always time for a good laugh! Posted by Hello

posted by angelwings @ 12:12 AM
   0 comments
Sunday, May 08, 2005
Learning to Walk
Just had to say that Brady although zoned out most of the time,is doing really well with his learning to walk.Hes becoming more confident than ever before,which is amazing due to the new meds.But he is into everything.Hes been a wild man this afternoon.His morning meds finally wore off and he is all over the place.Hes been clearing off tables,climbing nearly over the back of the couch,and trying to eat everything.He tried so hard to eat our dice to our yhatzee game,hes like lightning!Hes been pulling up to everything and turning around with his tummy facing out like he just wants to take off and walk.I really dont think its going to be long.And his daddy built him a walker and hes just all over the place in it.I put him in it and turned on the sprinkler,boy did he have a good time.He rolled all over the yard until finally he parked right on top of the sprinkler.He had a blast,naturally cause its water!I can guarantee though,that everyone in Andalusia will probably hear me when he does walk,so you will know when he does!Anyway just thought I would share a little good news!

posted by angelwings @ 12:34 AM
   0 comments
Yep, Another Seizure
Ok I really hate to keep posting about seizures all of the time,but thats our life.I didnt realize that I hadnt already posted about this seizure,but anyway here goes.It was the middle of this past week.He had therapy and done extremely well,yey Brady!But after therapy he decided to lay in the floor and go to sleep,this was good because he had another therapy coming up,and he would be nice and fresh for it.So anyway I luckily was sitting here on the computer,instead of trying to get some things done around the house.I noticed that he opened his eyes just breifly and then began to seize.The doc had said that he really didnt want us to give his diastat anymore,because he was taking it so often.So I picked up the phone and called his pediatrician because this was a really long seizure.The doc got on the phone and I explained to him that Brady was seizing while we were speaking and he told me to give his diastat right away.So I did and he stopped shortly after.I more and more nervous each time that he seizes.I think a part of me feels like they are getting worse and with the next seizure he could stop breathing.I have learned to cherish each and every moment with my children.I have realized how fast my life could be changed and my angels taken away from me.You just never know what tomorrow has in store.Anyway sorry to get all sappy,but its a hard thing to deal with,the not knowing.So we have added a new medicine,topamax.We are bringing him up gradually.But now since this last seizure the doc is having us to bring him up much faster than planned.He will be on 8 pills a day!So much for such a little boy,but what do ya do?!Anyway hes a zombie right now,and not himself.They say that it should get better once he gets used to the new meds,I sure hope their right.Its ashamed to take such a sweet natured little boy and make him so irritable and zoned out.Anyway I will keep you posted.We have some good news coming soon though.I wont spoil the suprise yet,some of you already know,dont tell!God bless you all!

posted by angelwings @ 12:20 AM
   0 comments


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.

See my complete profile

Home      Post        Edit

Hello world!!!! It's been way too long since we p...
   Okay, so I often hear the phrase "I hate Angelman...
  To all the educators of siblings to special needs ...
 
  I CAN (Cure Angelman's Now)!
  Eegs before and after mino.
  Minocycline results are out!
  Brady riding the jetski
  Chatting in the car
  Brady chatting in bed
 
Archives
January 2005
  February 2005
  April 2005
  May 2005
  June 2005
  July 2005
  August 2005
  September 2005
  October 2005
  November 2005
  December 2005
  January 2006
  February 2006
  March 2006
  April 2006
  May 2006
  June 2006
  July 2006
  August 2006
  September 2006
  October 2006
  November 2006
  December 2006
  January 2007
  February 2007
  March 2007
  April 2007
  May 2007
  June 2007
  July 2007
  August 2007
  September 2007
  October 2007
  November 2007
  December 2007
  January 2008
  February 2008
  March 2008
  April 2008
  May 2008
  June 2008
  July 2008
  August 2008
  September 2008
  October 2008
  November 2008
  December 2008
  January 2009
  February 2009
  March 2009
  April 2009
  May 2009
  June 2009
  July 2009
  December 2009
  January 2010
  February 2010
  March 2010
  April 2010
  May 2010
  July 2010
  August 2010
  July 2011
  August 2011
  October 2011
  November 2011
  December 2011
  January 2012
  February 2012
  March 2012
  April 2012
  October 2012
  December 2012
  August 2013
  February 2014
  June 2014
  July 2014
  December 2014
  January 2015
  March 2015
  May 2016
 
Interactive Seizure Diary

This downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.

Angelman Forum & Chat

The AS Forum was created in April 2005 and provides an easy way for family members and carers of people with Angelman Syndrome (AS) to exchange information with each other.

Cure Angelman Syndrome

The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.

Angelman Links
Angelman Blogs
All About Epilepsy