Well, we haven't been home long. We had to take Brady to a neuro appt in Pcola today. They have moved,so we ended up getting totally lost and being 30 minutes late, guess it was good that we were the last patients. Anyway, the appt went really well. The doc said that Brady was one of the most successful cases he has handled, as far as the VNS goes. We didn't have to make any changes on meds or the VNS, everything looks really good. At this point we have excellent seizure control (knock on wood). Everyone there was so surprised at how well Brady is doing. He sat in the chair, for the first time ever, by himself, to get his blood pressure. He walked all over the office, and of course was into everything. He tried to work on the computer and had to open every door he came in contact with. He even pushed the elevator button for us. He was jabbering to the doctor, not sure what all he said, but we could make out, mama, bubba and ok. His doc was bragging to the new practitioner about how far Brady has come, as far as development and seizure control goes. So we were super pleased with the overall visit. I have to share with you guys, that Brady's teacher said that he sat in a chair for 20 minutes straight and watched a movie, at school on Friday. Brady has never, sat still for 20 minutes, let alone watched 20 minutes of a movie! He has his manic moments, but they are becoming fewer. I can see my little man growing up, everyday. I cannot believe that he will be 7yrs old in May! It seems like just yesterday, he was 2yrs old and newly diagnosed! Wow, what a journey it has been to this point! Things have been chaotic at times, but the good times far outweigh the bad. Anyways, its been a long day and I'm beat, so gotta sign off for now. Will post more later.
Hey guys, as you can see, I have been making some changes to Brady's blog. I deleted the music, so that it would be more easily accessible to those of you, who are on dial up. We want everyone to have an opportunity to keep up to date on Brady's adventures, the music just makes things to slow for dial up, sorry guys. Also, I finally got Brady's Fundraising Link listed on his blog. Just click on the symbol that says Angelman Syndrome Foundation, Donate Now, if you want to give to Brady's Fundraising page. As you can see, we ended up raising a whopping $1,521.00last year, and would love to break that record this year! Remember that 100% of the funds donated, go to the Angelman Syndrome Foundation, for research and support. So, any and all donations are welcome, big or small. Thank you guys so much for your continued support, every year!
Just thought I would post a quick update, since Brady is a wild man tonight! Things are going great here. Brady had a good day at school today, I was able to get so much cleaning done while he was there! Not sure what was going on with him after we got home. He was so mad and frustrated with me. He kept trying to tell me something, but I never could figure out what it was he really wanted. He led me over to the car, put my hand on the handle, so I guess he wanted to go somewhere, not sure where though,lol. I drove him around the yard, but every time I turned around to come back to the house, he started telling me off. I ended up having to go down the road and drive him around for 10 minutes, to make him happy! I have heard of driving babies with colic around, but not a 6yr old,lol. Anyway, he was a bit better when we got home and seems to be fine now. So either the ride made him happy, he forgot what it was he wanted, or just figured mom was to dumb to figure it out,lol. The boys have field day coming up at school, this will Brady's first year participating, so it should be pretty interesting. I feel sorry for his teacher that has to run the 50 yard dash with him :) He should do great at the ring toss, since he can totally throw like a pro baseball player! I will be sure to get lots of pictures and videos for you guys to see, it should be a hoot. Were totally getting ready for spring break here. Were taking the boys camping for 4 days in Florida. We just got two wave runners, so we should all be water logged when wet get back. I will be sure to get more pics and videos, so you guys don't have to keep reading my boring posts,lol. Brady is loving the wave runners, he and his brother like to pretend to drive them and "dodge the ice burgs",lol. Other than the usual, climbing, spilling, jumping, giggling, mess making little Brady, things are pretty calm here at the moment, even though most people would consider our lives anything but calm :) Anyway, gotta get back to my little monkey, he needs some mommy time, cant imagine that......
First let me update you guys on things here. Brady is doing great, getting smarter by the day! Its getting hard for us to stay ahead of him now, he always seems to outsmart us,lol. He is doing great in school, but still having some issues with keeping his hands to himself :0 They got his new swing up last week, he loves it! When I came to pick him up, a first grade girl, met me in the hall, telling me that they had Brady's new swing up and that he loved it so much. I told her that they would have to take turns pushing him in the swing. Brady is finally learning to venture off from us, when we have him outside. He is loving his new found freedom. He runs around the yard, jumps on the trampoline and plays in the sandbox. But he has to come back and sit with us every 5 minutes or so, I guess its just reassurance for him. His brother really enjoys having someone to play outside with. He really wants us to leave Brady outside with him, but we haven't got up the nerve to do that, not sure we ever will. Its been a wild week here. My hubby had to have minor surgery on Tuesday, he has 6 kidney stones, one was blocking the tube. He goes back to the doc on Tuesday, and will most likely have another surgery the following Tuesday. Peyton ended up with a slight fever the day of his dads surgery, so Maw Maw ended up with two busy boys that day, while I was at the hospital with their dad. I have been working on getting sponsors together for our Angelman Walk in Mobile Al, its been a job so far, but is going well. So mark your calendars guys, Angelman Walk, Mobile Al, May 16!! Were going to have good food, good fellowship and lots of activities for both adults and kids. If you need more info, feel free to contact me at sfore@centurytel.net I wont go into detail, but we have had the most amazing day today. We met the kindest couple, I think we've ever met. I hope and pray that we made an impact on them, just as they made an impact on us. Just remember, when you think that the world is full of uncaring, selfish people, this is not true! Always try to see the good in those that surround you. Never take anything for granted and take every opportunity to be inspired. Remember to pay it forward every chance you get, whether it be big or small, because one day, it will come back to you. When you take the chance to bless someones life, you will be blessed in the end. So anyways, enough of my rambling. I will keep you guys posted on things here. I'm sure that I will have some Brady stories to share very soon :)
Guess you guys seen the pics from the petting zoo. Brady had a good time, but mostly enjoyed socializing with everyone. The cow that was mooing totally cracked him up though. He liked the baby chicks, but didn't know how to be gentle and nearly decapitated one of them,lol. He also liked the turkey when it made noises, he laughed so hard. When it was time to pet the baby goats and cow, he wasn't very interested, was far more interested in playing with the young men who were holding them,lol. As for the catfish in a bucket of water, wellllllllll, you can guess what he wanted to do there. But overall, he had a good time, was very tired before we were done. He did walk the entire time we were there, its so nice having him finally walking. Its been a busy weekend here. We were cleaning up the camper, getting ready for our AEA trip. Brady was so helpful. He gave himself about 4 baths, with his clothes on, flooded the kitchen floor twice, flipped the air conditioner on and off, and even managed to lock me out, when I ran to get air freshener from the car. Peyton and I begged Brady, through the window, to unlock the door, and turn the water off. I had to use the shop vac, to suck up all the water in the floor! So, we spent the entire weekend, Brady proofing the camper. we had to put a cover over the kitchen faucet, put a locking door knob, to keep him out of the bathroom, we put a lock at the top of the closet door and had to build a box over the air conditioner controls. Last summer Brady didn't know how to turn faucet knobs or door knobs, so things are going to be different this year. I'm just glad that we figured all this out before we left for our trip next month. Hopefully we have some things Brady proofed now,so maybe it will be a bit easier. He has been such a busy boy these days. He has stopped sleeping since Thursday night, and has been silly manic ever since. He is destructive and thinks it is just hilarious when he tears something up. I know it sounds strange, but a part of me his just thankful that he is able to do the things he does, no matter how tired I get, or how busy he keeps us. One thing is for sure, we never get bored here at our house. Anyways, not much else happening here. Will post more later.
Almost forgot to share this article with everyone. Our paper done an article on Rare Disease Day, and Brady was able to participate. Ive pasted the article below.
State honors rare disease sufferers By Stephanie Nelson (Contact) | Andalusia Star-News
Published Saturday, February 28, 2009
Courtesy photo
Brady Fore To Covington County residents, Brady Fore is already a somewhat well-known name. After today, all of Alabama will know his name — and about others like him who suffer from uncommon diseases — after the governor has designated today, Feb. 28, as “Rare Disease Day” in Alabama. This will also be the first time the nation will recognize the last day of February as “Rare Disease Day.”
Brady, 5, has Angelman syndrome, a genetic disorder that causes developmental delays and neurological problems. The disorder causes him to be non-verbal and have seizures. It is considered a rare disease because it affects fewer than 200,000 Americans. Since so few people have the disease, few Americans are aware it even exists.
The spotlight was given to “Rare Disease Day” to increase public awareness of this and other uncommon diseases. The day is also recognized by the National Organization for Rare Disorders (NORD) to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. This will be the second time for the worldwide recognition.
“People with rare diseases remain a medically undeserved population in every country,” said Peter Saltonstall, president of NORD. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”
Stephanie Fore, Brady’s mother, said she is grateful that the state is commemorating “Rare Disease Day” and hopes it brings more attention to little-known diseases.
“I think it’s wonderful,” Fore said. “It sheds light on a lot of disorders and diseases that people never heard of. We try to spread the word about Angelman syndrome every chance we get.
“Brady is such a wonderful child,” she said. “There are so many more children out there that while they may not suffer from Angleman syndrome, they may have some other something that is not easily recognizable like a child with say, Down’s syndrome or multiple sclerosis.”
Fore receives services and assistance through Children’s Rehabilitation Service, a division of the Alabama Department of Rehabilitation Services (ADRS).
Other Alabamians with rare diseases also can receive assistance through ADRS, the state agency whose mission is to enable Alabama’s children and adults with disabilities to achieve their maximum potential. Through its four major programs, the department provides medical, educational and employment assistance to people of all ages with disabilities.
For more information about ADRS, call 1-800-441-7607.
Just wanted to let you guys know that Brady is doing great! He is loving school, wish his brother could take after him,lol. Brady wakes up in the morning, I get him dressed, and hes trying to go out the door, to go to school, even before I am ready. He gets so mad when I tell him to wait, that its not time yet. This morning he got dressed and while I was getting my stuff together,he ran out the door, opened the car door and was getting in, lol. We had to go to school this morning to take his brother some lunch money,and Brady threw a fit when we had to leave. He totally wanted to stay at school,lol. I took him back at 1pm for his class, he was so excited. We even got to see the firetruck at school, but he was more interested in the firefighters :) Anyway when I came back to get him after class, he was sitting in the chair drinking his cup. I asked him if he was ready to go, he shook his head no and waved bye to me,lol. He yelled the entire way to the car. I think he would move into school if I let him. We decided to do some rearranging and go through some old things that I needed to get rid of, as well as hang some shades in the bathroom. While I was doing this, I look over to see Brady standing in the bathtub, with his pants, shoes and socks, in the water! I accidentally left the water in the tub, where I gave him his bath before school this morning, so guess it was my fault. Well, tomorrow will be an exciting day for Mr.Brady. He is going on his first school field trip, to the petting zoo, then to the park. I know hes going to have so much fun. He may not enjoy the animals, but he will certainly enjoy the other people there. I am charging my camera, so will have lots of pics after tomorrow. I will get them posted here tomorrow night. Anyway, gotta get some sleep. Its going to be a long day tomorrow. I will post more later.
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.
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.
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.
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.
