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Friday, February 27, 2009 |
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Hey guys! Just wanted to post a quick update, since were gonna be heading out soon. Brady is doing GREAT! He is over all of his sickness, and back to his honory, opinionated little self. He slept a few hours last night, but was up and ready to go by 3am. I decided since we had some last minute things to pick up in town, that would be a good time to do so. We were at Wal-mart before 4am. It was nice and quiet there, no other shoppers in the store. The best part was that we didn't even have to wait in line,lol. Brady had to greet all the employees in the entire store of course. I decided to let him get a toy, hoping it would keep him entertained on our trip. It was the cutest thing ever, watching him running up and down the toy isles, playing with all the toys. Its funny how we take the little things for granted, before we have a child like Brady. I was elated to see my little man being able to run, play with all the toys, and even make obvious choices about what he wanted to buy. I am so thankful that we have gotten to a point in Brady's life, that he is able to just be a 6yr old little boy.There was a time when we wondered if Brady would ever be capable to doing things like this. In the end, he picked out one of his favorite toys ever, a really cool shape sorter. We brought it home and put the batteries in, but he wasn't happy, having to give it up, so that I could load it into the car,lol.
Anyways as I said, Brady is doing awesome. His skills are improving every day. His communication is fantastic. Its so cool that he is now learning to take instruction and direction. He is becoming more independent as time goes on, which makes things so much easier for all of us. As most 6yr olds, he doesn't always mind, can be very opinionated and bull headed at times. But it thrills me to see him acting like other children his age.
Well, I've rambled on long enough. Guess I better get going here, so much still do. Hope to have some pictures to post by the end of the weekend. |
posted by angelwings
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8:25 AM
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Thursday, February 26, 2009 |
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Just wanted to let everyone know that Brady is doing much better. He seems to have gotten over his Viral Gastroenteritis, and been nice enough to share it with his mommy and brother. But I think that we are on the mends now, his brother is going back to school tomorrow. Were considering letting Brady go back on Friday. His brother and myself didn't have nearly as bad a case as Brady did. Everything else is good here. Brady is finally up and getting into everything now. He is still sleeping a lot. He didn't sleep last night, but slept all day, til 5:30pm and is now back asleep. He is spending more time asleep, than awake these days. This crud has really taken a toll on our little guy.
Anyway just wanted to post a quick update, gotta hit the hay now. |
posted by angelwings
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1:51 AM
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Sunday, February 22, 2009 |
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Just time for a quick update. Brady is very sick at the moment. He suddenly started throwing up Saturday morning, then the other tummy problems hit shortly after. By lunch he was so sick, that we needed to go to the hospital for tests. While we were there, he had a small seizure, so we opted to take him to the ER to be checked out. The doc on call, was wonderful, very knowledgeable about AS. He diagnosed Brady with Gastroenteritis. Brady wasn't walking at all yesterday, was very lethargic, and was crying with his tummy. He has seemed some better today, even walked a little bit, but seems to be getting sicker tonight. I had to give him phenogran again, since he started gagging like he was going to vomit. His diapers are having to be changed about every 10 minutes, but there isn't as much blood in them. His eyes have black circles under them and his skin is a very pale white. He is mostly laying around, we can tell that he is miserable. When Brady isn't smiling, there is something bad wrong, and we get worried. Were waiting on the stool culture to come back, but they tell us it will probably be the end of the week before we know anything. If this continues for much longer, we are going to have to do something, regardless of whether or not the cultures come back.
Anyway, I will keep everyone posted on how hes doing. But I have to get back to him for now.. Say a prayer for our little guy. |
posted by angelwings
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10:29 PM
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Sunday, February 15, 2009 |
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Well, things are going great here! Brady has been sleeping so much better lately, just hoping it lasts. School is going great for him. His teacher told me Friday that Brady now recognizes the number 1 and 2 and is using his communication device appropriately most of the time. They have been working no his name, he is doing great with that as well. He totally loves school and cant wait to get there every day. When I ask if hes ready to go to school, he shakes his head yes and pushes me out the door. Even when I don't say anything but am getting him dressed, he gets so excited, he knows where hes going. When we get to school, he pushes me out the door, and goes to his desk to work. My mother n law laughed and said that the would be the first male from our family, to actually love school,lol.
Brady is also doing great at home, his behavior has calmed down so much. He is learning in leaps and bounds, some things good and some things not so good. We now have to not only keep doors shut, but keep them locked as well. He has figured out all the door knobs now. I'm sure it wont be long before he figures out the locks, but we are just taking it day by day for now.
Brady also figured out how to stand on toys, to reach over things, and climb on things, so that is a new challenge for us. I dreaded the day that he figured out how to stand on objects, to do things he shouldn't be doing.
He has also learned how to change the channels on the TV, but we have to be careful that he doesn't order movies :) He loves turning the surround sound on, as loud as it will go. Guess were going to have to keep it unplugged. Its not a pleasant sound for his dad to wake up to, in the middle of night. I'm not sure why, but Brady thinks the TV has to be on at all times. The first thing he does is try to turn it on when he wakes up. If he cant get it on, he brings me both remotes, to turn it on for him.
Another cute thing that he does lately, is when he wants chips or anything that we might be eating at the moment, he goes over to his play room and gets any kind of cup or bowl that he can find, and has us to put food in it for him.
He really has ways of letting us know when he wants something, he is a smart little cookie. Now we just have to get the potty training thing going. There is no reason why this kiddo cant be trained, he is fully capable. Maybe since its getting warm and there will be fewer clothes, we can get training off the ground.
One last thing that I want to ask everyone to do, is say prayers for all of our Angels and their families who are sick, or going through difficult times at the moment.
We have one that has now gotten a trachea and cant gain seizure control, one that has been diagnosed with a relapse of cancer, one that is having terrible seizures and her dad has been diagnosed with a relapse of cancer, one that is having kidney problems as well as major seizure issues, one that is having med troubles, seizure troubles, shaking and lethargy, with no known cause and last but not least, we have an Angel in a drug induced coma, suffering from terrible seizures. So I ask that you pray for all of these families that I have listed and pray for those that I might have missed. They all need all the prayers and support that we can give them. Hold your loved ones close and be thankful for good health and for every day that you are able to spend with them and remember those who are not able to do or say the same.
Well, not much else happening here. I will post more updates as they come. |
posted by angelwings
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11:58 PM
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Monday, February 09, 2009 |
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Well I went for my first Wish today, it was great! I met the sweetest little boy, that really knows what he wants :)
Since I was gone, Brady's dad had to take off work and take him to and from school. He was amazed because Brady walked into his classroom, turned and waved bye, pushed his dad out the door and shut the door in his face,lol lol. This is the first time that his dad has taken him to school, so it was really hard on him. He has never left Brady with anyone besides me, and he so hated to leave him. I think it made things a little easier since Brady was telling him to leave :)
Brady's teacher said she could tell that he slept last night, he had a fabulous school day. It sounds like he was very cooperative. He slept all night last night and got up about 7am this morning. I on the other hand cant straighten out my sleeping habits that easy, so I was up til 5am and back up at 7am. I wish I could sleep when he sleeps, but if your not tired at the moment, it makes sleeping really hard.
Anyways, Brady has had a great day. He has been in such a happy mood. He wasn't acting sleepy earlier, but is now laying next to me, going to sleep, whooo hoooo!! I am tired tonight, so guess I'm gonna get ready to hit the hay with him.
I will post more later. |
posted by angelwings
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10:20 PM
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We've been getting behind in our posts, so I'm going to try and do better in the future :)
Brady is doing great. His sleeping is slowly improving, thank goodness! He has had a great weekend, been outside a lot. He had a Popsicle and some blue gum today, so mix that with the dirt, and he looked a site,lol. He loves being outside, when the weather agrees. He jumped on the trampoline with big brother today, they both love that.
Yesterday we had a fire in the fire pit outside, and Brady decided that he should go over and stick his hands in the fire! Thank goodness his brother was close by and able to stop him before he succeeded. It amazes me, but even more so, scares me to death, that he is totally fearless. He is very cautious about eating food that is the least bit warm, but yet he doesn't mind sticking his hands in a fire! He is learning to actually play and run around the yard now. Where as before he wanted to sit on us or on his Maw Maw, the entire time. His brother had company this weekend, and Brady played on the swings with them. Its so exciting to see Brady interacting with other kids, he almost seems typical at times. He really is growing up.
He is a busy boy these days, opening doors, climbing in the tub and turning the water on, escaping to the outside, climbing on everything, he really keeps us on our toes!
He lost another top, front tooth, so he has a really big gap now, its to cute!
He is doing great in school, he loves being there and loves his teachers. He is getting so much better about keeping his hands to himself around the other kids. But even when he does mess with them, they are so cute about it. They don't want us to get onto Brady about anything, they are all like a bunch of mother hens :) Its so nice to be able to send him to school and know that he is very well taken care of and that the people there truly love him and want whats best for him.
I got a really good deal on a very nice communication device, so were just waiting for it to come in now. I hope that this will be something that he can use here at home, hes doing so well at school, with his devices. I think that the new communication abilities have opened up so many new doors for him, he feels like a big boy. The best part of all of it, is that he doesn't get as frustrated and much less aggressive, than ever before. I have always tried to put myself in his shoes. I know it must be so hard to know what you want to say, but lack the ability to communicate that. I think the hardest two parts of Angelman Syndrome have been seizures and the lack of communication skills. I'm praying that in the near future, we will be able to overcome both of these hurdles and really move onto bigger and better things. The sky is the limit for our little guy, I know that he is capable of so much more than anyone realises. He continues to surprise me everyday.
Anyways, guess I better get some sleep. I have a Make A Wish meeting tomorrow, so wish me luck! |
posted by angelwings
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1:18 AM
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Thursday, February 05, 2009 |
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Well, its after 7am here, haven't been to sleep yet. Brady is still going strong, so not sure we will even go to sleep today. On the bright side, I was able to get tons done here in the house all night. I'm loving my new door from this room, to the laundry room. I was able to get all my laundry done, go through my old clothes and rearrange my entire closet, linens and clothes. Who knows, I might actually be able to get the entire house clean, all at the same time, for a change :)
We have a new respite worker coming in a few hours, hopefully I can stay awake for her. I did think about taking a nap while she watches Brady though,lol.
Anyways not much happening here. Brady is still a bit sick, I think hes just finishing up with this bug that we have all had. He has only manage to go to school 1day this week, not sure if he will make it tomorrow or not.
He has been pretty wound up tonight, you wouldn't know he was sick. He is loving the new freedom of being able to turn doorknobs now. He managed to escape into the bathroom while I was putting clothes up last night. I found him sitting in a tub with water, in his pajamas. So I guess now we have to learn to not only shut all the doors, but have to lock them as well. Guess we will be changing out the knobs that don't have locks on them.
Well guess I better see what my monkey is up to, hes playing in his play room, and is way to quiet.
Will post more later. |
posted by angelwings
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7:18 AM
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Monday, February 02, 2009 |
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Well, Brady is still a bit cranky, but I think were going to attempt to send him to school tomorrow. He doesn't have a temp the cough is getting better.
I finally got up the nerve to put breakable nicknack's in our new room,for the first time ever! So far Brady has been leaving the decor alone, hes more interested in the remotes, and opening the doors. He has learned to turn the doorknobs on the doors going in and out of this room, so that has made things a bit more interesting. So far, I can lock them and he doesn't know how to unlock, but its just a matter of time before he figures the locks out. Luckily I have locks installed at the top of the door, so that will be the last resort. Leave it to our little guy to show us the loop holes in our newly designed, Brady proof room :) His dad got the tv mounted up on the wall, so just waiting to see what Brady is going to do with that.
Anyways thats about it for now. Will post more later. |
posted by angelwings
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10:20 PM
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