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Tuesday, August 30, 2011 |
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Well its been a little while since we updated, so thought we would take a minute to do so. Brady continues to do great, aside from a little tummy troubles for the past few days. We spent Saturday with some great friends, who just happen to also have a child with Angelman Syndrome. Sunday we had a birthday party at the lake, so it was a busy weekend.
Brady is back to his wild,happy little self. He has been breaking things, spilling things, stuffing our shoes full of paper and toys, escaping to the outside of the house, and playing in water every chance he gets. He is back to socializing and making new friends every chance he gets. We really didnt realize how docile he had become before he went into the hospital this last time. I guess that when you are with them all the time and they change so gradually, you just dont notice it as much. While I did sense that something was wrong with him, I didnt realize how unsubtle the changes really were. I can truly say that "he is totally back" and is keeping us on our toes now,lol.
As for our contest with Vivint, they will announce the winner on Sept 6th, but I think we got this ;) Cant wait to be able to move forward with clinical trials for an Angelman treatment!! Big things are going to happen very soon!
We met our new neuro/epileptologist last week... she was very nice. She was pleased with Brady's progress so made no changes to his current treatment. She gave us some tips on how to prevent Brady from slipping back into status, so hopefully this will prevent any future hospital stays/comas.
Lots of exciting things coming up in the next few months!! We fly out to Boston October 17th to meet our new Angelman/Epilepsy specialist, then head to Nashville Oct 20th for the Bella Bash. In Nov we head to Mississippi for an Angelman get together and then we have to start getting ready for our Angelman Walk in Pensacola! Yes guys, we are having an Angelman Syndrome Walk-A-Thon in Pensacola Fl! We are super excited to get this thing started and hope to raise tons of money, so we expect to see all of our friends, family, etc, there May 19th! Cant wait to see old friends and make new ones!
Anyway, time to get my pix uploaded. Will be posted some here shortly! Hope you all have a super duper day! |
posted by angelwings
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2:19 PM
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Monday, August 22, 2011 |
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Well things are going great here!! brady is back to being his mishevious, naughty little self. He has been emptying to cabinets, dismantling my shoe racks, unloading the dryer, throwing sippy cups out the car window, etc.... Our lives are finally getting back to the chaos that we like to call our normal.
We go to Birmingham to the new epileptologist on Tuesday, this will be our first appt since he was discharged from the hospital. Hoping to get some good news and answers tomorrow.
Anyways, dont forget to vote for Angelman to win the Vivint contest!! We need to this money for Angelman Research and treatment! Good night all!! |
posted by angelwings
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12:50 AM
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Wednesday, August 10, 2011 |
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Hey guys! Im proud to report that things have been quiet around the Fore house! Brady continues to recover and is getting better day by day. He did not get to start back to school yet, but will prob be ready in a few weeks. Right now he continues to sleep alot, but is back to smiling, laughing, and getting into mischief when he is awake. Even more good news...we got an appt with an Angelman doc in Boston and will be flying out in October. Hopefully this doc can give us some pointers on how to keep Brady seizure free and out of status. We will also be seeing a new epileptologist in Birmingham. Our hope is that the Boston doc, the Birmingham doc, and our ped can work together to provide an awesome medical team for our sweet Brady.
Anyway, thats all Ive got for now. Dont forget to pray for all of our Angels who are experiencing seizures or other health issues at the moment. Also, please pray for sweet Cooper who is battling a serious illness as well. And......dont forget to VOTE!!!!!!!!! Good night all! |
posted by angelwings
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1:58 AM
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Wednesday, August 03, 2011 |
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Quick Update
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Brady is doing so great today! We went to his Ped this morning and had a great visit. Brady got lots of hugs, popcicles, and stickers while he was there,lol. He has been full of smiles and flirts today...its so great to have him almost back to his old monkey self :) The appointment went well. The doc says that Brady looks great, especially for what he has been through lately. He said that the little cough is just from the tube and could last for up to three weeks. We got some cream for the rash on his face (from the tube), and with the help from our awesome Ped and his staff, we even managed to get our insurance to pay for namebrand Zonegran. Note to all parents: be careful switching to generic seizure meds. We dont know that the switch caused this, but it is ironic that he began to have problems shortly after we allowed the pharmacy to switch him from namebrand zonegran to generic. Insuurance told us that they would not pay for namebrand unless we tried generic and had a problem....I would consider a drug induced coma a problem!
Anyway, the day was great.We are super excited to be flying to Boston to meet with a specialist. Dr. Thibert is an epilepsy specialist, but has tons of experience with "Angelman Epilepsy". We will also be seeing a new epilepsy specialist in Birmingham. We are nervous about the new changes, but know that it is necessary to be sure that Brady is taken care of.
Well thats about it for me, I am beat. Remember to pray for all those in need tonight...there are so many. Thank you all for the continued support and dont forget to VOTE :) |
posted by angelwings
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11:27 PM
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| Brady continues to progress. He made his first trip to town today, but tired quickly. His dad had to come by and take him home before I finished shopping. He came home and rested and was being a bit mischevious tonight, so that was nice to see. Still waiting on his records to be released so that we can determine what to do or who to see next. Will try to post more updates. Please keep praying for our sweet man, as its going to be a long recovery process, and an uncertain future. Much love to all who are keeping up with, praying for, and supporting us! |
posted by angelwings
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12:56 AM
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