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Sunday, June 28, 2009 |
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Well guys, in between not sleeping, we managed to slip off to the beach today. Brady stay up all night Friday night, slept a little during the day Saturday and was up Saturday night. I stayed up all night Saturday night, went to the beach today and didn't get a nap til about 5pm. So were pretty much all tired out and all sunburned, except for Brady. We knew to load him up with sunscreen. Anyway, Brady had gotten scared on our last trip. The boats were making lots of waves, he refused to go back in the water. So we were not sure how he would do at the beach today. It didn't take him long to get over that fear, he had a blast. He loved surfing the waves, they were huge. He had sand in places we didn't know he had though. He kept dipping his honey buns and chips in the sand,ick....... But the birds really enjoyed the sandwich that Brady pinched into pieces and didn't eat.
Brady is doing great! He stole a bag of m&m's last night poured them into his bowl, without spilling even one. He is so cute, walking around, holding a bowl or cup out , wanting us to add food. Everything has to go into a bowl or cup. He has also learned to dip his fries in ketchup. If we don't give him ketchup, he will hold the fries out at us, and fuss, till he gets some,lol.
Anyways, my keyboard is messed up, so its hard to type, and im wore out, so gonna get off. Will post more later. |
posted by angelwings
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11:01 PM
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Tuesday, June 23, 2009 |
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Hello my friends! Not much to post about this morning, but since I'm still up, why not post something :)
Things are going great here. The Big Happy Tent project seems to be "taking flight". Were really excited about this project and hope it does as well, if not better than anyone expects. But even more, we hope that this project will be able to provide some well deserving families, a stress free, fun filled, adventure. If you want to check it out, visit the Big Happy Tent link, listed on our page, or go to www.bighappytent.org
As for things here, were still not sleeping. Brady is really partying these days. He is averaging about 2hrs of sleep, per day, no nighttime sleep. He slept about an hour during the night, so maybe we can squeeze at least one more hour of sleep out of him today.
He really is doing well, despite the not sleeping. We seem to have good seizure control at the moment, we are so thankful for this. I think that we might actually be getting back to some sort of normalcy in our lives. I know that putting the word "normal", next to "our life", may make some of you think that we have finally flipped,lol. But, we are just enjoying ourselves, so much, these days. When Brady was having seizures all the time, we were constantly on guard, it felt almost, as if the seizures were our jail cell. Everything about our lives revolved around, when or if Brady was going to have a major seizure. Now, we are feeling much more comfortable letting Brady stay with his Maw Maw over night, or just for an hour. Were even considering having a night of camping, just for mommy and daddy, but that remains to be seen. We now can go riding the boats up river, and not have to be stressing over whether or not Brady is going to have a seizure, this has happened to us before, not a pleasant experience. Now, when we roll into a new town, we don't immediately start looking for the nearest hospital, just in case Brady ends up in status. Don't get me wrong, we carry our magnet and diastat every where we go, but just as a precaution, not that were expecting to have to use it. So yeah, life for our family, has changed tremendously over this past year.
Brady continues to develop new skills, and abilities on a daily basis. He has gotten so good about answering yes or no questions. He will stand in front of me, fussing, obviously trying to tell me something. I can start asking him questions, like "do you want a cup", "are you hungry", "do you want to outside",etc. He will answer appropriately every time. If it isn't a yes or no question, he will take me by the hand, and lead me to whatever it is that he wants.
I have been letting the leash out more and more these days. For the last two days, we have let Brady, walk with his brother, up to Maw Maw's house (shes our neighbor). It is the cutest thing, seeing both boys trotting up the driveway, heading to Maw Maw's. I always call ahead and let her know to be watching for them. It just cracks her up, to see Brady toddling up the drive way, looking so independent, and feeling so accomplished :) I think that allowing him more Independence, has been a huge step for me, its so stinkin hard!! But I have always said, that you can make a typical child, have special needs, if you smother them, and don't allow them experience new things in life. We have to learn to let the leash out, and let them make mistakes, this is how they learn. We have to allow them to learn, that if they fall, to get back up, brush themselves off and keep going.
I am looking forward to, and am excited, to see what the future holds for Brady, the possibilities are endless. Life is just one big adventure :)
Well, Brady is finally sleeping here next to me, but not sure for how long. So I'm gonna head on over to sleep town with him. If your reading all the way to this point, you have suffered through my ramblings, so thanks! Will post more later. Have a great day! |
posted by angelwings
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5:37 AM
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Sunday, June 21, 2009 |
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Cool Story/New link!
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Hello everyone! Just wanted to tell you a cool story about something that has been happening, since our last camping trip. When we arrived at the park, it was raining, and rained on and off for the first two days. But, as you could see by the last pictures that I posted, we had a blast on this trip! It wasn't long after the rain stopped and we were able to go outside, that we noticed a young family at a campsite near us, having the time of their lives. Two young children, were laughing and playing, with their mom and dad. This little girl had the prettiest, curly, red hair. I could hear this little girl and her younger brother giggling, a mile away. My first thought was, how cool it is, to see such a loving, devoted young family and to see these young children, having such a good time.
Anyway, it was really wet outside, and of course water puddles everywhere. Anyone who knows Brady, knows that he isn't going to let an opportunity like this pass. So he quickly ran over and sat down in the water puddles draining down the sidewalk. Of course, I didn't dare try to stop or prevent him from doing this, I knew that it would be useless to try and keep this kid from water.
I was taking pictures of him, playing in the puddles, when this young family approached us. The kids quickly joined in with Brady, and then Peyton joined them as well. I had the opportunity to chat with their parents, while all the kids played, they were very interesting people. I just could not believe, how much energy this couple had, if only I had half of their energy,lol. Their children, have equally, if not more, energy. As I talked with the parents, they told us that their names were Marcel(dad), Leigh(mom), Nina(big sis) & Waylon(little bro). They told us about all their travels in the last days, they had been to several different states, visiting family. Now, I would have been a nervous wreck, if I had traveled with two young children, all those miles. But these guys, seemed to take it all in stride and enjoy every minute. They had, at the spur of the moment, decided to swing by this campground that we happened to be at, and stay the night. I don't think that any of them had ever been camping before,lol. As we all watched Brady in the water, Marcel, Leigh, Nina and Waylon seemed a little curious about Brady, since he was not talking and obviously acted different than your typical child. I explained to them that he had Angelman Syndrome, what it was, and a little about how it affected him. They seemed very interested in learning more about Angelman Syndrome. I told them about his blog, that they should look it up sometime and that they could contact us on through there. We agreed, that we would like to stay in touch each other, after we all got home. We had planned to get together later that night and watch a movie, but things were so busy, and we were all wiped out, so we didn't get the chance.
They all left, the next morning, so we didn't get a lot of time together. I was hoping to hear from them once they were back in Texas, but to be honest, really didn't expect to.
It wasn't long after we got home, that we found a comment on Brady's blog. It was Marcel and his family. They had made it home to Texas and were trying to get in contact with us. I emailed them back, but the email was bounced back to me. I wasn't sure how to contact them, until they actually emailed me. It was really cute, they were not sure they were even emailing the right people, but gave it a shot anyway,lol.
As the weeks after our trip progressed, I have spoken with them several times. This truly is an amazing family. They have started a project called, "Big Happy Tent". This is going to be a non profit organization, that takes Angleman Families camping. Its so ironic, that they just happened to be at this campground, that this was their first time camping and that we were total strangers. They had never even heard about Angelman Syndrome before this day. But yet they were so inspired and so willing to try and help Angelman Families. As much as they were inspired by our family, I think they have been an even bigger inspiration for ours. This project is still a work in progress, but quickly coming together. I have posted the "Big Happy Tent" link, in the right hand column, under "Angelman Links". Please take the time to visit this website, its going to be amazing. Marcel, Leigh, Nina and Waylon are working very hard, to make this dream a reality. They need our support to make it happen.
I think that, so many times, we parents, especially those of who are special needs parents, forget or just don't have the time or the financial means, to sit back, look around and just enjoy life. This is going to be a great opportunity for families, to just get away from it all, if only for a little while. I cant speak for everyone, but I know that our family loves to "just get away from it all". I think that camping is one of the things that helps keep us sane and grounded.
Anyways, you guys check out The Big Happy Tent link! If you have any questions, please feel free to contact me. I will keep you posted on this project.You guys can help, by passing this link to everyone in your address book :) Last but not least, we want to send a big THANK YOU, to Marcel, Leigh, Nina and Waylon, you guys rock! Will post more later............ |
posted by angelwings
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3:54 AM
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Wednesday, June 17, 2009 |
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Hey guys! Sorry I havent been posting much lately, life has been chaotic, as usual. Things are going great here, just keeping busy this summer. Brady has been doing well, but really bored, since school is out. I can tell that he misses his teachers, and everyone else at school. He will be attending school more this upcoming school year, so that will be nice for me. I just started back to college, for Elementary Education. Hopefully by the time Im done, I can find a position in the Special Ed setting, thats where my heart is. Anyway, while Brady is in school, I will have more time to focus on my studies.
Not much else happening here. Brady doesnt sleep much these days. He is one happy little guy, so that makes the nights pass more quickly. He still continues to move forward developmentally, hes growing up so fast. He has developed a new obsession with hot things, and things that require electricity, not a good thing. He has managed to stick the tip of his finger to the iron and the stove eye. He has managed to stick the tip of his finger in the wall outlet, and tried to get his tongue in it as well. Each and every time, he cried, but went right back to do it again. He is such a determinded, headstrong kid!
On a lighter note, Brady has also developed and obsession with dipping all of his food. He loves to dip his chips in dip, french fries in ketchup, he dips anything and everything,lol. I have to give him a bowl with dip, just so he can dip all his food.
Well, its been a long day today, so Im gonna get off of here, and watch a movie. Will post more, and more often, promise. Have a great week you guys. |
posted by angelwings
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10:05 PM
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