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Thursday, April 22, 2010 |
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Were back! Its been a little while since we posted, as usual life has been chaotic here. Brady is doing well. We took him back for a followup EEG a few weeks ago. While we were getting him hooked up to the EEG monitor, he went into a full blown tonic clonic seizure; he had been seizure free for two weeks to that point. The doctor came running in and I had to run to the car to get the diastat. Luckily the seizure only lasted about 3-4 minutes, so we did not have to give the diastat. Since he was in the postictal phase (after seizure), the EEG was all out of sorts. We were able to determine that while he had a lot of electrical activity, he was not in status. We changed his meds once again, he is now taking zonegran and depakene, which seem to be working (knock on wood).
We have seen a lot of changes since he started the zonegram. He is much less aggressive with his hair pulling and pinching. He is back to the sweet Brady that always knew he was. Brady has been quite the little monkey lately, getting into everything. He is back to putting things in the toilet, climbing over things, and just getting into everything!! He has been to school every day this week, which is a huge improvement. We are excited to be getting our lives back in order and out of the seizure limbo that they have been in since December. Just praying that things continue to improve and that this is the last of the evil seizures.
As some of you may have noticed, it is fundraising time again. I have posted a new fundraising widget at the right hand side of the page. However there are two, one is from last year and I have no idea how to remove it,lol lol. So just click on the second one and it will take you where you need to go. Our goal is to reach $1000, but we are not doing to good right now. Between life, school, and Brady, I just don't seem to be able to find the time to fundraise like I need to. Anyway if your interested, we would be greatly appreciative of any and all support!
On a sad note, we do have some sick Angels at the moment. Hunter is in the hospital with pneumonia. He has come off of the breathing tube, but is not in the clear yet. Colin has been in the hospital in non-convulsive status, as Brady was in December. Colin was in a coma and on a vent, but is now out of status and off of the vent. Pj is one of our older kiddos. He had back surgery and is now believed to be in non-convulsive status, but his mom is finding it difficult to get the care that he desperately needs, due to having to navigate the adult medicaid system. So please keep our kiddos and their families in your thoughts and prayers. We pray for total healing of Hunter, Colin, and Pj. I also want to send out prayers to sweet little Julie, does not have Angelman Syndrome, but is still a little Angel. She had a rare form of eye cancer and has been having some issues. We pray that her cancer is not back and will never return!!! Please pray that God guides the medical team and helps them to know how to treat these children. We pray for strength, courage, and encouragement for their families.
Will post more updates later. |
posted by angelwings
@
12:31 PM
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| About Brady |
Read Brady's Story Here
I am a happy, healthy 9yr old little boy. I have Angelman Syndrome which makes me even more special. I bring joy to all those who meet me. Just because I am unable to speak, does not mean that I dont have lots to say; I make that very clear to mommy and daddy everyday!
See my complete profile
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Big Happy Tent |
Big Happy Tent is a homegrown non-profit organization started by Marcel Cairo and his family. Our mission is to take Angelman kids and their families camping, surround them with nature, water, music and fun, and let them soak in the wonder and joys of life.
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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 Syndrome Foundation |
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Angelman Syndrome Foundation is a national organization of families,
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Angelman
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The AS Forum was created in April
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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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