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Thursday, November 03, 2011 |
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Hello everyone!!!! First let me just apologize for not posting pictures like I promised. For some reason the blog is now allowing me to post....will have to get tech support involved Im afraid.
Anyway, its been an exciting, emotional couple of days here. We have a number of Angels who are sick, suffering from seizures, or have been involved in accidents :( Please keep these little ones and their families in your thoughts and prayers.
As for Mr. Brady, he is doing well. We got all of his med levels back yesterday and one of his med levels (zonegran) was very high, so we began reducing that med this morning. Please help us pray that the reduction does not create a seizure problem and that it helps Brady to be able to eat again.
Another issue that we are having at the moment is that Brady has developed an odd calice on his foot. He walks on the inside of his feet, so we suspect that this is now causing the calice. We go to the ortho doc next week to find out what or if we need to do anything.
Aside from the calice, high med levels, and negative effects of the seizure meds, Brady is doing pretty good. He refuses to eat, but is enjoying lots of calorie filled smoothies. As for the seizures, we have not seen even an absent seizure since his VNS was turned up on October 17th (knock on wood).
Moving on.... all of you Angelman families who are located in MS, LA, AL, and Fl, dont forget about our Magnolia Angel reunion on Nov. 12th in Hurley Ms!! Were going to have food, activities, an amazing slideshow, and lots of Angel chaos :) :) While this is a Magnolia Reunion, we welcome any friends and family who would like to attend. Its going to be a day of fun, so come and join us!!!!
In other news...the long awaited FAST newsletter finally made its way to my email tonight! I skimmed through it several times tonight, but finally had an opportunity to sit down a few minutes ago, and read through, without interruption....all I can say is WOW, the wait was so worth it!!!!!!! It discusses the probability of a cure, clinical trials, and even shares the words of a wise young woman, who suffers from Angelman Syndrome. When asked about how she felt when we spoke of a cure or treatment, she said that she wanted to be free on the outside. Harli is an exceptional young woman who successfully uses a communication device to speak for her. So thank you Ms. Harli for being such a strong voice for all of our Angels!! I pray that one day you and all others affected by Angelman will be free on the inside! As I said, the newsletter was amazing. It spoke of many things, including a section on how Bradys hospitalization affected the Vivint Angelman votes and the overall community. Above that you get to see a beautiful picture of our little Angel. I also found out that clinical trials are going to be help in Florida, so now we just pray that Brady gets in! Anyway go to
Cure Angelman November 2011 Newsletter and read through...you WILL NOT be disappointed!
Its now time to get out of here and work on the Magnolia Memory Lane, slide! Gn all!!!!!! |
posted by angelwings
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1:22 AM
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