Angelman Syndrome, Life as an Angel

Friday, October 28, 2011

Hello All!!!!
Now that life has slowed down a bit, I thought that I should take some time to update our blog. As I read a comment from an Angelman sibling tonight, I was reminded why we started this blog and how important it is that we continue our efforts. I have had so many people contact me to say that Brady's blog has been an inspiration to them. Thank you all for keeping up with us, even if we havent been updating as often as we should. While I know that your have read about the many challenges that Brady and our family experience, I hope that you find comfort in the joy that feels our lives. I hope that those of you who are trying to cope with a new diagnosis, find resources and support that you need. My computer is always open, so please dont hesitate to contact me at anytime!
First I want to take some time to remember the losses in our community. It breaks my heart to say that we have lost a number of Angels throughout the past few months. So please keep all of the families in your thoughts and prayers. Hold those babies tight and enjoy every moment with them!!
Our lives have been crazy in the past few weeks, but we are having a blast! We finally made it to Boston to see Dr. Thibert and he is just as awesome as everyone said he was! He had some great suggestions for us to take back to our docs here. I think that things are going to get even better for our little man in the future.
Brady is doing well, although he had a few slight seizures while we were seeing Dr. T. He turned the VNS up and we are pleased to say that we have not seen any seizures since. Brady done fairly well on the plane right there. My husbands company was generous enough to fly us out on their personal plane, so Brady was very comfortable on the way there. He would not stay in the seatbelt. He spend most of the time laying in the floor and exploring the plane. He really didnt seem to care that we were miles in the air,lol. He even managed to deploy the oxygen masks more than once, so it was a funny site watching my hubby frantically trying to push them back up,lol. After we got to Boston, we were met by two amazing Angelman moms and precious little Caiden. We all hung out and just talked in our hotel room...it was great!!!! We flew home and two days later, headed to Nashville for the big Bella Bash, which was hosted by Regie and Yolanda Hamm....go to the Bella Bash page and check it out!
The Bash was as great a we had hoped it would be. We met some wonderful people that we have talked to for years, but never had an opportunity to meet. The entertainment was great, the company was awesome, and the experience was simply beautiful!! Brady did show out a little before the Bash, but he quickly made friends in the Angel room. He spent the night running back and forth from us to the Angel room. The volunteers that helped with him were lifesavers! Brady danced much of the night away with different people and ended up having such a good time. The day after the Bash,
Regie came and picked several of us parents up and delivered us to the Grand Ole Opry Hotel. There were about 16 of us just hanging out with our Angels and enjoying each others company. Dont know how Regie managed to stay awake to entertain us all day, but so thankful that he managed :)
We are back home now, getting ready to go to Chicago in December. We wont two tickets to the Angelman Gala, YAY!!!!!!!!! We were going to try and drive the 14hrs but we just dont think Brady would do well on the trip, so we opted to let him and his brother stay home with Maw Maw. Will totally miss them, but know were making the right decision. Its going to be a very special Gala this year, as we are nearing clinical trials for a potential Angelman treatment!!!!!! Cant wait to meet everyone who has been involved in this process and to find out more information. The bonus is that we get to meet about 500 people; many are Angelman parents. I wish that I had time to go into detail about all of the amazing things that I have witnessed in our community this year, but I dont think you want to read that long,lol. I will just say that, despite our many challenges this year, it has been a year that I will never forget. We will end it with a bang....in Chicago :)
As for Mr. Brady...he is doing very well, considering what he has been through. He is almost back to being the little mischevious, flirting, little social butterfly that he used to be. He definantely has up's and down's but has more good times than bad. Seizures seem to be under control but he is not eating at all these days. He has lost 5lbs in the past few weeks. we suspect that it is a side effect of one of his seizure meds. We got bloodwork tonight and hope that it will reveal any problems. We have to make the decision whether to stay on the med and not eat, or to come off and risk more seizures...its a tough decision, so please pray that we make the right one. We will just call this a little bump in the road as we have already climbed over the mountain this year. As long as he is here with us, we can face the challenges head-on. We just started special, calorie filled smoothies tonight and I think he is a very happy little boy. Hopefully we can get some meat on those little bones soon.
Well I guess that I should be going, as I have lots of pictures to upload. Keep checking because I probably wont get them all done tonight. Hope you all are doing well!!!!

posted by angelwings @ 1:22 AM 2 comments

2 Comments:

At 9:47 PM, Taryn08 said…

Angelwings,
You had mentioned in this blog about a clinical trial that is coming soon that could possibly have an effect on AS. If you were able to participate in this trial with your son, would you?

Taryn08
At 2:20 AM, angelwings said…

Hello again,
Yes, I would def have my son participate in this clinical trial. I do know that the medication that will be used, is already on the market. The med is fairly safe, and prob has fewer side effects than all the seizure meds that Brady takes three times a day. I feel comfortable and safe with trying a med that could potentially change my son's life for the better. This would be a daily treatment that could be stopped if problems occured. I would be more leary about something such as gene replacement, but would not rule GP out. I would want to be more educated about gene replacement and if a negative effect occured, could it be reversed. We will take it one clinical trial at the time and just see what happens. I do not expect a miracle with this treatment, but an improvement would be great. Hope this helps :)

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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.

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