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Monday, December 07, 2009 |
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Were back!!
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Well, did you guys miss us?!? We are finally back. We had some security problems with our blog and was unable to log on, since July, but we are back now, with tons of updates.
At the moment, we are sitting in Brady's hospital room, exhausted and sleep deprived; so this will be a short update.
Brady went into non convulsive status, but we didn't find out until Tuesday of last week. We came into the hospital at 10pm that night and have been here ever since. It has been a roller coaster ride this week, but we think things are looking up. Brady has been on a ventilator, and in a drug induced coma, but is now off and awake. They woke him up yesterday, and he has just in the last 5 minutes, come off of oxygen. He coughed up his feeding tube last night, so all that is left is the catheter and IV's. He is not very alert right now, as the meds are still keeping him very sedated. Hopefully we will be sent to the floor soon, were in the PICU now. Our favorite nurses are leaving tonight and wont be back for a while, so were hoping to move out where both Craig and I can stay in the room with Brady. Craig is sleeping at the Ronald McDonald house, and I am sleeping on a little couch in Brady's room.
Anyway, were waiting now to here back from the latest EEG, to see how bad the seizures are now, hopefully they wont be to bad. He has had several EEGs, and one continuous while he was on the vent, and they continue to improve.
Anyway, I am exhausted, and its almost time for us to get kicked out, so I will post a better, more detailed update later. |
posted by angelwings
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5:54 PM
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My thoughts and prayers are with you!!!
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| 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
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Hello my friends! Not much to post about this morn...
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Hey guys! Sorry I havent been posting much lately,...
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| Archives |
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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.
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Angelman
Forum & Chat |
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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.
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Cure Angelman Syndrome |
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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.
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My thoughts and prayers are with you!!!