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Thursday, February 28, 2008
Wow,two posts in one night,am I on it or what,lol. Its nearly 5am here,and Brady is still going strong,but Im not....... We decided that we would go through all of our socks,underwear,etc. and throw some away. Brady has been a tremendous help,nottttt!! He has been picking up my piles of socks that were sorted through,putting them right back in the basket:O He has been wearing everyones underwear on his head,I did get a laugh out of that one,lol. I would throw the old ones in the trash bag and he would bring them back and put them back in the basket,lol lol. Now I know why I never get all the laundry done. I swear if someone here in town ran a business of doing laundry,I would pay them mega bucks to do mine every week,lol. Anyways,I did finally get done,their all sorted now,just cant put them away with everyone else sleeping,guess today's another day,lol.
Just thought Id post a quick update. Hope everyone had a good nights rest and that yall have a great day.

posted by angelwings @ 4:57 AM
   0 comments
Just wanted to post a quick update on Brady. He is doing well,changing the TV channels at the moment though. He is over his sickness and we are going forward with his VNS surgery. As times draws near,we are getting more and more nervous. I think the waiting,having time to really think about everything that could go wrong,makes things worse. But we know that it is the right decision for Brady,and are strangely,looking forward to getting it over with. We haven't seen anymore seizures since Brady's last hospitalization,a couple weeks ago,he is holding his own at the moment. He has been in such a great mood these days,and into everything! I was putting up groceries yesterday and he came into the kitchen and grabbed two knives out of the knife block on the counter. I swear his arms are getting so long. I call him go,go,gadget arms,lol and his is fast as lightning. He quickly went from gadget arms to Ninja Brady,yeah thats a scary thought,huh. I know its a strange way of looking at things,but you have to learn to find the humor in things,life is to short to do otherwise. Anyways no incident,the knives are safely placed on top of the fridge now. But that is the very reason I don't let Brady wander around the kitchen,way to much for his little wandering mind and hands,to get into. Next time Im putting up groceries by myself,he will be safely strapped into his high chair.
Everything else is good here,other than not sleeping,:( I think sleep must be overrated though,lol. People ask me what I do all night when I'm up with him,well I update his blog,we fight over the television(he makes it do things I didn't know were possible),I'm constantly cleaning up the tremendous mess he makes in this room,I'm always grabbing him down off of things,he will use anything to climb on the counters or desk,but the fun part is getting to cuddle with my little man. He is turning into Mr. Snuggle pants,its so sweet. Oh we fight over the wet wipes all night,he thinks that they are made to be taken out of the box,and stuffed down in all his little toys,lol. Oh and he eats all night,which is a great thing!!! Its 2am here and hes going strong at the moment,but hes happy. We will probably get in bed sometime after 5am (if I'm lucky)and sleep til 11 or 12pm (if I'm lucky,which is a big improvement compared to past times. I'm learning to be thankful for the small things,lol. Don't get me wrong guys,I'm not complaining at all. I love my little man and could sit and listen to him jabbering all day and night,there cannot be a sweeter sound on this earth. And just watching him walk,makes me know how blessed we are. We waited so long for the day he would walk,I just sit and watch him in sheer amazement. One things for sure,it is never boring here,so you wont ever hear me say that,lol.
Anyway that's about it for me,nothing really new,but wanted to post something for you all to read. I promise I'm going to get more videos on here soon,so keep checking back. Gotta go get the monkey a banana,hes hungry. Will post more later.

posted by angelwings @ 1:59 AM
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Monday, February 25, 2008
Things are going well here. Brady seems to be over his sickness and were just praying he stays well for his surgery. He has been a little climbing monkey lately. He managed to use a bouncy ball to climb up and empty the top cabinets in this room. He also used a little chair to climb all the way up on the cabinets,which are as high as he is tall! He is doing really well though,still eating like a little piggy. He hasnt mastered that blue moon yet though,lol. Well I was doing laundry today and Brady decided that my piggy bank needed a diaper stuffed in it,so now I cant get it out,lol. He rearranged the bathroom and kept turning the lights off while I was trying to do laundry,its hard to do that in the dark. Anyway my little man is finally sleeping so Im going to take advantage of it,will post more later,and check back for more videos,hopefully today.

posted by angelwings @ 2:32 AM
   0 comments
Wednesday, February 20, 2008

posted by angelwings @ 11:39 PM
   3 comments

posted by angelwings @ 11:39 PM
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posted by angelwings @ 11:39 PM
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posted by angelwings @ 11:37 PM
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posted by angelwings @ 11:36 PM
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Just wanted to let everyone know that Brady is doing well,knock on wood. He of course is into everything,and has learned to use toys to climb up on things now. His eating is still improving,if thats at all possible,still cant seem to fill him up these days. His sleeping has been better the last couple of days,but still far from sleeping all night. He is sleeping at the moment,but I expect him to be up soon. We started him on Omega 3 Fish Oil recently. Its supposed to help with aggressive behaviors,sleeping,increases the seizures threshold,etc. So far I cant tell much of a difference with him,but we will see. He has been biting a lot the last 2 days,dont know whats going on with that. He has also starting hitting himself in the head,not real hard,and with the front side of his hand,I just cant figure this kiddo out sometimes. Anyway not much excitement here,with him that is. We took dad to the doc yesterday,a vein specialist. They say that we cant do much about the swelling and other issues hes having in his legs,it is long term and not curable. They gave of some things to do to treat his legs,so hopefully it will help. So while you guys are saying a prayer for Brady,please throw one out for his daddy as well. I will post more later.

posted by angelwings @ 12:22 AM
   0 comments
Friday, February 15, 2008
Its 6:30am here and we havent been to bed yet. At the moment Brady is jumping up and down on the bed and acts as like someone on a major sugar high. I swear he acts like its just middle of he day for him. I dont know how this kid gets away with so little sleep,mom doesnt fair as well Im afraid.
I dont know what they dosed his IV up with this week,but man hes been on it and I want some of what he had!! He has been climbing on everything,I have had to totally rearrange the furniture,in hopes it will now be Brady friendly. His new favorite thing to do is climb on top of the hot tub,which is prob 4 ft or
more off the ground!
For some unknown reason,Brady has started back eating. I dont know if it has anything to do with the high powered anibiotics or not,but I pray it continues. He is eating like a piggy. I call him a bottom feeder,he scavenges on any piece of food he can find,and loves to steal big brothers leftovers out of his lunch box. We just cant fill this kid up!
He has also turned into a regular Chip N Dale. I cant keep clothes on him.. I have tried everything from duct taping diapers,overalls,footie pjs,footie pjs backwards,altered footie pjs,nothing works,he is just a regular Houdini!! I think its time for potty training at this point,as he is taking his diaper off to go potty,or if he does accidentally go beforehand,he will bring the wipes and diapers to clean him up. I do try sitting him on the potty,but he will hold it for as long as I make him sit there,not sure how were going to get this potty thing kicked off just yet. As someone told me before,repitition is the key to learning,so were just going to have to stick with it.
Anyway he is doing great,hes mastered zippers,opening and closing things,putting lids on and off,throwing a ball or anything else he can find. This kid hase got a good arm on him thats for sure,so be prepared to duck. He almost ordered something on tv from the shopping network last night,he has a new facination with the remotes and his mommys love for shopping,lol. He is also getting very good at answering yes and no questions,appropriately. I would say he prob answers correctly about 80% of the time,which is huge for him and his communication. As I said hes doing great,if he would only sleep more than 2 or 3 hrs a day,uhhhh.
Well thats about it for now. I will keep posting as it happens. Hope everyone has a great day!

posted by angelwings @ 6:31 AM
   2 comments
Monday, February 11, 2008
Well we just got in today from a 3 day hospital stay. Friday night Brady had a seizure,high fever and was acting very strange.. So I took him to the ER,where he had three more drop seizures on the way in. They done tests and he did have pneumonia,but it was a bit better than before. His white blood count was only 13,000,but since all the nurses knew him,they recognized that he wasnt acting like our typical Brady. So they got us admitted sometime after midnight and started IV fluids and antibiotics. By 4am they repeated the white blood count and it had jumped up to 21,000. So we spent three days on IV,doing breathing treatments and getting stuck all the time. Brady finally started drinking Sunday night and started coming back to himself,after being totally lethargic all weekend. We didnt really determine what caused all the problems,but they suspect it was the pneumonia. So were home now,and Brady is doing great,so glad to be home. He is eating like a pig,but his drinking is slowly returning. We are all totally drained at this point. Poor Peyton had the hardest time being away from all of us,I guess he really does love us,lol. I felt so bad about being away from him,but he had to go back to school today. Anyways all is well now,so say a prayer that it stays that way. The doc put Brady on an antibiotic here at home,as well as breathing treatments. Hes being aggressive with treatment since Bradys VNS surgery is coming up soon. Well thats about it for me,will post more later.

posted by angelwings @ 11:04 PM
   0 comments
Tuesday, February 05, 2008
Well some of you might not know this,but Bradys surgery has been rescheduled to March 12th,due to him being sick. We thought that we were dealing only with an ear infection,but got a call from the doc yesterday,and he does have pneumonia. It seems as though he only has a light case,so were going to try and avoid using antibiotics,since he has taken so many lately. He is doing well,and to look at him,you would never know he was sick. He got up before 4am this morning and kept being woke up by the phone today,so hopefully he is going to sleep soon,Im keeping my fingers crossed. Anyway,thats about it for now. I will post more later.

posted by angelwings @ 10:43 PM
   0 comments
Friday, February 01, 2008
Well it’s been a crazy 2 weeks here!!! We started off last Thursday, by having to go get big brother from school, he was running a temp. He continued to be sick through the weekend, and then Brady started with a fever Sunday. By Monday, I started running fever and feeling really nasty. So on Tuesday we tested Brady for the flu, which he tested positive. So Tuesday afternoon, dad comes in from work sick, uhhhh. We all ended up having the flu, and have been so-so sick!!! Brady's fever actually broke on Tuesday, so we were thinking that maybe he had a very light case and that we would get off lucky. Meanwhile, Peyton seems some better, no fever by Tuesday, so he goes back to school, only to have to check out yet again. He missed school on Wed and went back on Thursday. He started running temp Thursday night, again and crying with his ears, as we suspected. So we started him on an antibiotic, but he is still running a temp as we speak. As for Brady, he went back to the ENT today, fever free as he has been most of the week. The ENT said his ears looked perfect. They were clear and not draining this morning when we went to the doc. So after we came in this afternoon he decided to take a nap, since he only slept two hrs last night. When he woke up, he had a fever. Since his surgery is scheduled for this coming Wed, we were in a panic. The doc had us take him to the hospital, since it was after hrs and he got an antibiotic shot, hoping to get him well before his surgery. The doc said that pneumonia and ear infection are two of the biggest complications from the flu, so he wasn’t surprised. Anyways we went ahead with the chest x-ray as well, to see what were up against, before we decide what to do about the surgery. While we were there, they used an ear thermometer to check Brady's temp and much to our surprise, his ear was draining!!!!!!!!!! I swear it wasn’t draining just hours before, what the heck!! So apparently, both boys have ear infections now, after just getting over the flu. Craig and I are both weak as water at this point, however Craig is not feeling better at all. He is running a temp tonight. All three of my boys are running fever right now :( I seem to be the only one that is getting completely well at the moment, knock on wood. Sooooooo, please say a huge prayer that my family can get well and that Brady will be well enough for his surgery on Wed. If he can’t get it then, it will be put off for some time I’m sure. Oh yeah, if any of this doesn’t make sense, just read through as best ya can, I’m goin on being sick all week and 2hrs sleep, so bare with me. I will post more as I have time, but before Wed for sure. So keep reading and I will let ya know if we make to surgery or not and don’t forget to say those prayers!!!!

posted by angelwings @ 8:41 PM
   1 comments


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About Brady

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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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