Well we had a fabulous New Year's Day and night!! Some of our friends from Florida, who have an Angelman child, came to stay the night with us. We all had a blast while they were here, and were sad to see them go. We went out for supper New Year's day, but had to settle on Pizza, as everything else was closed for the day, but we had a great time anyway. We came home,played on the Wii and just hung out together, while the kids played. Were looking forward to having them over again, and hopefully they can stay longer the next time :) Anyways, Brady is doing great! He has been using signs lately. We've been going over the signs with him, and he has been picking up on them pretty quickly. So far his favorite sign is "hungry", go figure,lol. If nothing changes, he will get to start back to school next week. I know that he is missing his friends and teachers; I think it will be good for him. He is handling his meds very well, to our surprise. We go back to the doc Jan 19th, not sure if they will do an EEG, but were a little nervous, after last time. I will keep you all posted. Last but not least, please keep our Angels in your thoughts and prayers. We have many kiddos suffering from seizures these days. Sean, one of our babies, is in the hospital atm. He has been suffering from multiple seizures lately and has been admitted for a 24hr EEG. Please pray that the docs can get a handle on these seizures and that this family can bring their baby boy home very soon.
Well its been a little while since we updated, so thought I would do so in between coats of paint. Brady is doing well, 100% recovered for his ordeal a few weeks ago. He has been being a little stinker, but whats new I suppose. He has been very interested in signing lately; he is now signing hungry all the time, he never gets full,lol. We are now working on the sign for sorry and stop, he is doing well, but not quite there yet. Yesterday Brady woke me up pretending to be "Poocasa", as he was painting my bed and back with poo :( After changing the sheets we decided to head to town, on the way he to no surprise, decided to climb out of his seat belt and try to get up front with me. When he was trying to come through the center of the front seats, he started falling, so naturally I reached to catch him. When I reached to catch him, I looked off of the road for seconds, swerved over and hit a garbage can, and he fell anyway. I was worried that he had really hurt his arm because he was holding it crying. After I pulled over and got in the back seat with him, he started laughing, much to my relief. I then got out to check out the damage to my car, some scratches and big dent in the passenger door. The good thing was that Brady did stay in his seat belt for the rest of the day, it really scared him,lol. Today has been a good day, but a busy one of course. Brady woke me up this morning, sitting on my back, riding the horsey,lol. He has become quite the early riser these days. Later on today, Brady decided to pour a gallon of paint down the drain and paint himself, as well as taste of the paint; all while I mopped. He then decided to walk all around the bathroom leaving Brady paint prints everywhere. It has been a wild one, but I wouldn't have it any other way. So thankful to have all four family members home and well. Were going to be working on getting insurance to pay for a new car seat for him. Meanwhile some very caring people decided to purchase a standard seat for Brady. This seat will hold up to 100lbs, so Brady is well under that mark. But it only holds up to 50" in height, and Brady is already 47". At least this seat will buy us some time while we appeal our insurance for a special seat. Now we just have to purchase Angel guards to go over the seat belt latches and we should be set, I hope. Well gotta get back to painting while my little monkey is sleeping. Will post more later. Hope everyone has a fabulous New Year!!!
Well I had a free minute and thought I would post a full update on what has been happening here over the past few months, but mostly this past two weeks. Brady started having seizures again back in September. The seizures were non convulsive and unlike any that we had seen previously. He did have one case of convulsive status, which was stopped with diastat. We have changed his meds around many times since then, and thought that we might be getting a handle on the seizures. I contacted our doc recently and requested an EEG, since it had been a while since Brady had one. We took him in for the EEG, Monday before last. We came home, figuring that it had some abnormalities, but were in no way prepared for what would happen the next day. Tuesday rolled around and while we were out, the doctors office called, but were closed by the time we got in. I was concerned that there were problems with the EEG, so emailed the neuro. While I was waiting to hear back, I got a call from my sister n law, who works with my hubby. She said that our doc had called an left a message on the wrong voice mail, her voice mail. It was only to confirm whether or not we wanted to cancel an appointment. Shortly after I spoke to her, our neuro called us here at home. He had gotten my email and gone to look at Brady's EEG. He was nearly at a loss for words when he started talking to me. He said "Stephanie, its bad, really bad". He explained that most patients with EEG's like Brady's, were never sent home, but straight to the hospital. He told me that Brady was in non convulsive status,which meant that, although Brady appeared mostly normal, his brain was seizing non stop, around the clock. He said to let him make some phone calls and call me back. Within minutes he called back to tell me that he everyone at the hospital in Pensacola on alert, to be waiting for us and to head to the hospital ASAP. So, we packed up and headed to Florida, again, not being prepared for what would happen. We thought that Brady would probably get some meds in the ER and be sent back home, but we were wrong. They gave Brady the meds and an EEG, which seemed to calm down a bit, then sent us up to a regular room for the night. The following morning, they done another EEG and things turned to chaos after that. They transferred us to the Pediatric Intensive Care Unit and started Brady on the meds from the night before, plus a new one. He spent the night on these meds, but the EEG had no improved by the next morning. They decided that it was time to increase the meds, which would put him in a coma, and would require him to be on a vent. We waited outside for them to get him hooked up to the vent, but again, were not prepared for what we would see when we came back in the room. Our little angel had a vent breathing for him, feeding tube, cath, and EEG wires coming from his head. At one point there were 5 IV pumps hooked up to him. They nicked his kidney when putting in the cath, so his bag was filled with blood. After a while he started to swell, it did not even look like Brady at one point. He had to be suctioned frequently because they found that he had pneumonia. We struggled for several days with his O2 stats dropping and all of the fluid in his lungs. After a while, the EEG began to look better, and they decided that it was time to wake him up and get him off of the vent, which was music to our ears; it could not happen soon enough. They reduced the meds and removed the vent, but left the cath and feeding tube. He slowly woke up and began to cough, gag actually. As I was talking to him, I noticed a tube in the back of his throat, asked was that supposed to be there. He had actually gagged so hard that he coughed up the other end of his feeding tube, so it had to be removed. Even after Brady woke up, he was very weak and could not lift his head. He had not been able to lift his head from the time he went into the hospital, due to all the meds. We doubted our decision to have put him through all this, as he went into the hospital walking and laughing. We finally got moved to a regular room on Tuesday night, after a full week in the PICU, and by Wed were released to go home. We were thrilled to be heading home, but terrified that it might be to soon. We rode the wheelchair out to the car, and I had to lay down in the backseat with Brady the whole way home, because he was just to weak to sit up. It has been a slow process, but Brady is getting back to himself now. He has held his sippy cup today, held his head up, and even took a couple of steps by himself. We went back to the doc today, and the pneumonia is much better, but he has a yeast infection from all of the antibiotics. At this point, yeast seems very minor, compared to everything else that our little guy has been through. We are just so thankful to have our little guy home. God has answered the many prayers that have gone up for our little man. I told Craig that God had a busy week, because there were so major prayers heading his way during all of this,lol. Everyone has been so kind throughout this past week, I cant even find the words to say how much we appreciate all of the cards, prayers, thoughts, phone calls, etc. It has been an emotional roller coaster, to say the least. Anyway, now that Ive written you guys a book, I am going to sign off, but not before I give a shout out to our two favorite PICU nurses, Christina and Summer, and of course our wonderful Neuro Dr. Suhrbier!!! Thank you guys for taking such good care of our little Angel.
Well, did you guys miss us?!? We are finally back. We had some security problems with our blog and was unable to log on, since July, but we are back now, with tons of updates. At the moment, we are sitting in Brady's hospital room, exhausted and sleep deprived; so this will be a short update. Brady went into non convulsive status, but we didn't find out until Tuesday of last week. We came into the hospital at 10pm that night and have been here ever since. It has been a roller coaster ride this week, but we think things are looking up. Brady has been on a ventilator, and in a drug induced coma, but is now off and awake. They woke him up yesterday, and he has just in the last 5 minutes, come off of oxygen. He coughed up his feeding tube last night, so all that is left is the catheter and IV's. He is not very alert right now, as the meds are still keeping him very sedated. Hopefully we will be sent to the floor soon, were in the PICU now. Our favorite nurses are leaving tonight and wont be back for a while, so were hoping to move out where both Craig and I can stay in the room with Brady. Craig is sleeping at the Ronald McDonald house, and I am sleeping on a little couch in Brady's room. Anyway, were waiting now to here back from the latest EEG, to see how bad the seizures are now, hopefully they wont be to bad. He has had several EEGs, and one continuous while he was on the vent, and they continue to improve. Anyway, I am exhausted, and its almost time for us to get kicked out, so I will post a better, more detailed update later.
Well guys, its been an eventful week here, to say the least! I officially started school this week, have been confused to no end and working my butt off, but I think I'm getting the hang of it (fingers crossed). I took Brady to the doc yesterday, he had a blast, as usual,lol. I had to take him to the back,out of the waiting room, he was trying to steal some poor kids sippy cup. So I took him to the back, and tried to give him a glass of water, but he remembered where they kept the Popsicle's and would have no part in that nasty water :) He suckered them out of two Popsicle's and a roll of stickers, he's one persuasive little dude :) But he decided that the Popsicle's might not be as good as they looked, two brain freezes later,lol. He of course, had the run of the office and was behind the reception desk, playing with all the ladies there. He really wanted to peek in all the rooms to see how everyone else was doing, but I strongly suggested that he not do that. I took him back into his room several times, where he would turn the water on, attempt to get in the trash and flip the lights on and off, eventually escaping back to the hall. We did get a good report though. His height was well above average, but his weight was still a little below on the charts, at 42lbs. The doc prescribed a new sleeping med, Trazadone, but since he has slept the last two nights, we haven't had to tried it out yet. On the way out the door, we had to walk behind a row of chairs, where there was this poor, unsuspecting lady sitting. I walked a little ahead of Brady, to get the door, but when I turned around, Brady had fallen behind. He had a death grip on this poor ladys hair and was looking her eye to eye. She looked a little ticked at first, but after I apologized and managed the prize Brady's hands out her hair, she said it was ok,lol. So anyways nothing big happened in between that time and last night. But oh, did we have a crazy, manic chaotic morning!!! I woke up quickly, realizing that it was 8 minutes after the time that our respite worker was supposed to be here, and that Brady was MIA. Some time this morning, he snuck out of my bed and disappeared. I quickly jumped up, thinking the bathroom door was locked, so he couldn't be in there. I ran to the den, where I realised that he had opened the utility room door, gone through there, and opened the other door to the bathroom. Apparently his dad forgot to lock that one this morning. Meanwhile, as I'm running through the den, someone is banging on the door, its the respite worker. But I'm so concerned that Brady may be in the tub, drowning, making a mess, just not knowing what to expect, that I just let he keep knocking and ran right past the door. Oh the site, that I found when I got to that bathroom, was almost indescribable!!!! Here was Brady, standing in the middle of my garden tub, water still running, surrounded by containers, shampoo bottles, 2 full rolls of toilet paper, some shirts and about a thousand other bathroom items, all floating next to him. The water was looked like one of those fancy pools, where it just drains over the sides, but it was nearly that relaxing or pleasant....... I quickly dragged Brady out, who still had his totally drenched, falling apart diaper on, and turned the water off. I must have been standing in at least 2 inches of water at this point. I never said a word, just dragged him to the den, opened the door to the respite worker and said "take him". She stayed back here and changed his diaper, while I assessed the damage. The water of course filled the bathroom floor and everything in it, it seeped under the walls, into my bedroom and the front entrance. Everything was flooded!!! I tried the mop, but it broke, tried the steamvac, but it wouldn't work for some reason. There were a few towels in the dirty clothes, so I used those to clean some of it up. But for the most part, it just ran back out the walls I guess. The fans dried some of it up, but the bathroom floor is still pretty damp. I came back to the den, where the respite worker asked if I had another broom, apparently the broom broke while she was sweeping :0 All I could think was what in the world, dare I ask whats going to break next!!! Brady was on it the rest of the morning. He was doing his very best to break everything he could get his hands on. At one point, I literally started checking this little Angel for horns! He has already broke one of my fans, and started working on the new one today. He just loves to flip them over, doesn't get any funnier than that. He was throwing the remotes down, knocking the batteries out, ripping up pieces of paper in the floor, and go my school notebook, totally ripped the binding out, flinging pages everywhere. Anyways, we survived, thank goodness. I never got upset, except when I didn't know where he was, or if he was ok. After I found that out, everything else seemed pretty trivial. But I do have to admit, breaking a sweat during all of this,lol. Well, Brady is now sleeping, so I'm gonna head that way. Just thought you guys might enjoy another Brady adventure. When your feeling stressed today, just think of Brady, standing in the middle of all that water, splashing and having a grand ole time :) Night all..............
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.
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!
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............
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.
Well we have some exciting news to share with you guys!! Brady has decided that its time for him to potty train. He has been taking his diapers off, when he feels the urge to potty, which, diapers off, with most kids would be a bad thing. But we are so excited to see him recognizing the fact that he has to potty, and not wanting to do it in his pants :) If you had ask me years ago, if I would have a child that had just turned 7yrs old, and would just be beginning the potty training adventures, I would have told you that you were nuts. But yet, here we are, Brady just turned 7 and were starting this his big potty training adventures. We have been taking him to the potty today, every time he takes his diaper off, we have to work on a potty symbol for him though. I think he may have tinkled a couple of times in the potty, but its kinda hard to know for sure. He has had many less wet diapers today, so he must be going in the potty.. He does know what we want him to do there, he tries really hard to potty for us. I have to admit, that the first couple of times were trial and error. I quickly learned that I have to move the garbage can away from his reach, while hes on the potty, or it can get messy quickly. I also learned that I have to take the lid off of the tank and disconnect the chain from the handle, to prevent him from flushing repeatedly. I already knew to remove all toilet paper from his reach, or it would have been in the toilet. The Rifton Potty chair has been a Godsend. It prevents him from being able to jump back up off the potty and keeps him from falling in. He knows that, once he is strapped on, its time to potty, then he gets to stand up and flush. I wont even go into detail about our excited, potty dance that we do after hes all done :) I think that he has decided that mommy must be totally insane by now.... But after, only one full day of potty visits, we just got our first real pee and poo poo in the potty!!!!! I am so totally thrilled! Thrilled to see that the diaper days could be over very, very soon, thrilled to know that the thousands of wetwipes per week and a half,days, are nearly behind us! And, hopefully, this means that our big parties (most of you know what I mean),are a thing of the past. I have to say, that I am very surprised at how well our first real potty day has gone, Brady is doing great! What a way to start off his 7th birthday and our summer vacation. I think its going to be a very exciting summer for us. As for the rest of the day, its been pretty good. Brady has been a little fussy, but its probably due to his not sleeping these past few days. He has been driving us totally crazy, with all his new, noisy birthday toys. I miss the days when he couldn't flip those little on and off switches on the backs of the noisy toys,lol. He likes to climb right up between us on the couch, when were watching a movie, and play his little guitar and juke box. I'm going to be hearing those tunes in my sleep tonight! No matter how many times I turned it off, or put it on the floor, he always ended up right back between us, playing his music. Anyways, it looks like the little monkey is getting sleepy, so I better go encourage him to sleep. Be sure and remember him on Wed, its the big kinder graduation!! Will take lots of pictures......
Just thought I would post a quick update before bedtime. Brady is doing great, but has been a busy boy today! He started the day out with a bang this morning. He took his pants off and peed on my bed. Naturally my washing machine called it quits today, couldn't be because of having to wash our bed clothes every day from the pee........ Brady got up in a good mood and was ready to go to school.He went and got his shoes and gave them to me, to put them on him. He was such a big boy, and climbed into the van and into his seat, all by himself, which is a huge help for my back. He had a great day at school, he was so glad to be there. He went straight to work when he got to his classroom. We found out today, that he is going to get to graduate kindergarten with the rest of the kids, next Wed. Were so excited about this, it is something that we were never sure he would be able to do. Rest assured, there we be tons of pictures and video taken of this event! We came in from school and Brady was ready to run. He managed to ruin another roll of toilet paper, by throwing into the bathtub with him. I think he also flushed some unknown object down the toilet, because it wouldn't flush tonight. Thank goodness we keep the plunger on hand, for Brady incidents. I'm not sure what he flushed this time, but it couldn't be the bathtub stopper, since he has already flushed all three of them. The good news is, we did manage to get the toilet unstopped after some minor plunging. Brady has also resorted back to his stripper days. He has been ripping the tabs off his diapers, taking them off and peeing in the floor. So, since he knows that he has to potty, before he actually goes, I guess this means its time to potty train. Were going to start this summer, and hopefully the school will be able to help us when he starts back next year. Meanwhile, were going to have to buy pullups, with no tabs, and hopefully this will encourage him not to be stripping. Also, do you guys realise that Brady has a birthday coming up on Thursday?!? It just seems like both boys birthdays come around way to often these days!! Last but not least, we found out today that Big Brother Peyton, will most likely be getting glasses in June. Apparently they found that he has an astigmatism, just like his dad. We go back June 12th and will probably pick out his glasses at that time. Hes going to be so handsome in his little glasses, however hes not thrilled,lol Well since this turned out to be a long update, rather than a quick one, guess I better get going. Night guys............
Well guys, we made it back! The walk went great, even though Brady was a bit cranky. He had been so overly stimulated from all the activities and had been up early that morning. We took the camper down, early on Friday, and just stayed at a campground close to the walk site. We had my mom and Craig's mom, otherwise known and Nana and Maw Maw, with us. When we first got there, it started storming. We didn't even unhook the camper, we just went inside and waited it out. We tried to turn the tv on, but lightening kept tripping the breakers, and then it started lightly hailing. But we made it through with no major damage. Brady woke up about 1:30 Saturday morning, climbed down the steps and hopped into bed with Maw Maw. She said he lay down next to her, clapped his hands and said "ok, ok, ok",lol. I think he pretty much slept from then til 5am, when we all got up to get ready to leave. Friday afternoon and the first part of the night, Maw Maw and Nana pretty much kept the boys at the campground, while Craig and I done walk stuff. We got several phone calls from Peyton, letting us know that Brady was tearing the camper apart,lol. I think that Brady pretty much gave Nana and Maw Maw a run for their money. He eventually found a mud puddle to play in. I think that the grandmothers were so exhausted, the mud puddle was a welcomed site, it gave them a little bit of a break from the wild man. There were chips in the floor and parts a diaper that Brady had torn apart. Brady had bit Nana and got blood and the grandmothers looked as if their hair might have been standing on end, when we got back Friday night,lol. They mentioned that I might fire my babysitters, but I told them heck no, that I didn't fire free babysitters,lol. As for the walk, it really did go well. I don't think that there were as many people as last year, probably due to the anticipation of bad weather. It was thundering when we woke up Saturday morning, and the weather said there would be thunderstorms. Thank goodness, the weather held out, we had a good time. We had some people there from Texas,and even some from Indiana I believe. We learned a lot from the walk this year, I think that each year, will get better, as we learn more things to do and not to do. I'm already looking forward to next year. As for Brady, I think he has raised nearly $900 so far. I'm not sure how much our walk raised, or how much the ASF raised all together. But I will let you guys know as soon as I have the numbers. Thank you all so very much, for supporting our cause. With your help, we get closer and closer to a cure or at least treatment.
Did you guys see that Brady suprpassed his fundraising goal!!! He is now at $785, whoooo hooooo!!!! We also managed to get nearly all of our refreshments donated for our walk as well. I am so very nervous, but am also so very excited! I just have to say, that all of you have donated, ROCK!!!!!!!! Anyway, gotta get going here, still have tons of things to get ready, before we leave. Be sure and check back Saturday night/Sunday morning, for pics! I am going to be sure and get tons of pics at the walk. Wish us luck. Will post more later.
Well guys, its getting close to walk time!! Hope all of you will come and walk with us, as we walk for a cure! Things seem to be coming together in our planning. I have to say that even though we live in a small town, the people and businesses here are so very generous. So far we have managed to get nearly all of our refreshment items donated. So a big thank you, to all of you who have donated money or items for the walk!! We also managed to get a local business to donate the signs for our walk, so a big thank you, to them as well. For anyone who wants more info about the walk, please feel free to contact me. We really are going to have a blast this year, so come join us! As for Mr. Brady, he is doing really well, but has been a bit off balance today. He has fallen down a couple of times, and there have been several times that I managed to catch him before he fell. I have been a bit concerned, because he fell yesterday, and hit his backside on the boat trailer hitch. I know that it had to have really hurt, as he cried real tears, which is not normal for him. Today he has a scrape and small bruise. I think that the balance problem, might be from being sore. Hopefully he will be better by tomorrow. He has a big walk coming up this weekend, so we cant have him stumbling around for that :) He went to school today, his teacher said he done really good. He got to play with several other kinder students during circle time. His teacher said that he interacted really well with them, they all seemed to have a good time playing together. I know many people wont understand our excitement, but it is a big deal for us. We did start the day off with a bang this morning though! We had a visit from our nurse case manager and the lady in charge of his waiver program. While I was talking to them and signing papers, we noticed Brady playing with something on the bottom of his foot. He kept touching his foot, then smelling of his fingers. We quickly realised that it was poop that was on his foot, and now his hands and legs :( I cleaned him up, and cleaned up the poo foot prints all around the room and went to change his diaper, but it was clean. We finally realised that one of the ladies had stepped in poo in the yard, and tracked it in. Sometime when Brady was playing with and sitting with her, he managed to get it on the bottom of his foot and it just went down hill from there,lol. What a great way to start off the day! The only other major malfunction that we had was this afternoon, after school. I decided to do some house cleaning, which is extremely hard for me to do, with Brady home. But I was determined to get some things done here, so gave it my best shot. While I was cleaning up Brady's brothers room, Brady sneaked to the kitchen, and poured a whole thing of cooking oil, all in the floor, on the counter and on the stove. Then he decided that he needed to play in, stand in it, and smear it all over the place! I very carefully, took his hand, and walked him back to the bath tub, for the 3rd time today. He was slipping and sliding all over the place on the way,lol. You can just imagine what a mess the cooking oil was to clean up. With my hubbys help, a roll of paper towels, spray bottle of pinesol, a mop, and shimmy cloth later, we did manage to get most of the grease up. We even had to pull the stove out and mop under it! Somewhere in the midst of my cleaning frenzy, I ended up loosing 2 rolls of toilet paper, thanks to Mr. Brady throwing them in the toilet! What is up with his obsession to throw things in the toilet! Oh well, at least I can say that we never get bored here :) Anyways, that's about it for my day. I am exhausted and looking forward to bed. I pray that Brady stays asleep!!!! Night guys............
Well, just thought I would post a quick update, since Brady is at school at the moment. We had a great weekend this weekend! Brady has been a bundle of energy and into everything, but he is just so much fun! He really does keep us on our toes :) Brady has now learned to unlatch the screen door, so we had to move the latch up to the top of the door, so he couldn't escape to the outside when we were not looking. I don't think that there is anything this kid cant do. The only thing we can do is put things up out of his reach for now. When he gets taller, I'm not sure what we will do,lol. There is a banister separating his playroom and the living room area here. He learned this weekend, how to move a toy to the banister and climb over! He is just getting way to smart for us. Brady had a blast yesterday, at our Mother's Day get together, at his Maw Maw's house. He thought that everyone had gathered together, in his honor, or that's how he acted,lol. He went from one person to the other, snorting and blowing them kisses. He even suckered a few people into rocking him for 5 seconds, he wouldn't stay still longer than that :) He is such a little bundle of energy, I do wish he would share some with me. Anyways, he was so tired out from all the excitement, that he fell asleep early last night, and slept until this morning. It was so nice to get a full nights sleep. He is at school now, having the time of his life, I'm sure. He was totally ready for me to leave, he wouldn't even wave bye at me, he was to busy. Its so cute, when we walk into school, the kinder kids are outside having snack. They all start yelling "look, theres Brady". Everyone has to stop and wave at him, and of course Brady just eats up the attention hes getting. One more cute thing before I go. Peyton or better known to some of you as Big Bubba, has been taking up so much time with Brady these days. Peyton has been taking Brady outside to play on the trampoline with him. They get under the sprinkler and splash around in the kiddie pool together. My Peyton is just growing up before my eyes. I cant believe that he will be 11yrs old this year! I am so glad to see him taking up so much time with Brady, and Brady just eats it up. He thinks that his brother can do no wrong, he really looks up to him. Of course they do still fuss like brothers, but there is a bond between the two of them, that most people just cant understand. When Peyton goes to bed at night, he will say "love you mommy", then he says to Brady, "love you twit",lol lol. I know hes calling him a twit, but its so darn sweet that hes saying that he loves him,lol. When Brady wakes up in the morning, the first thing he says is "where Bubba", Peyton thinks that's so cool. I just couldn't be any prouder of either of my precious boys, they are such amazing little boys. Well guess, I better get going here. Will have to get the boys at school in a little bit.
Well, its been a busy weekend, but has been a good one. Brady has played outside all weekend, while his dad and myself worked in the yards. Even with a gallon of bug spray on our little guy, the bugs just cant get enough of him. So he goes back to school tomorrow with multiple bug bites, poor little man. He also got a little sunburned, despite the sunscreen, but he doesn't seem to be bothered. I guess between playing in the pool, playing on a wet trampoline and his brother spraying him down with the waterhose, the bug spray and sunscreen kept getting washed off. Its amazing how the outside just doesn't agree with Brady, but he loves it so much. Brady has been sleeping much better lately, but seems to be breaking his sleeping routine tonight, naturally, since he has school tomorrow. We have our puppy inside tonight, and Brady just cant seem to get enough kisses from her. Everytime I look around, he has his tongue out licking the poor dog,lol. He even got really jealous that the pup was sitting between me and his dad :) Anyways, guess I better see if this little monkey will go to sleep, if we plan to make it to school tomorrow. Will post more later.
Just thought I would post a quick update before we head to bed. Brady went to sleep sometime after 3am yesterday morning, got back up about 9am and was up for the day. He went to school and is now asleep! He had a great day at school, he painted, played with playdough, done his lesson, circle time with the other kinder kids, and even sat through a complete story in the library! I am just amazed at how well he is doing these days. There is no that he would have had the focus and control, 6mths ago, to sit through an entire story! The teacher was really proud of him and so are we!! Tonight, we were sitting in the yard with him, when I heard to sweetest sound coming from him. He was sitting in a chair, like a big boy, kicking his legs, and I would have swore that he was singing!!!!!!!!!!! I asked his dad did he hear the same thing I was hearing and he said he did. I honestly don't think I have ever heard a more precious sound in my life, it truly was like hearing Angels singing :) :) Anyways gotta get to bed now. Will post more later.
Well, just thought I would give you guys something to laugh about :) I was thinking this afternoon, on the way home from the grocery store, how every trip to the store with Brady, ends up being a wild adventure,lol. Yep, you guessed it, I took Brady to the grocery store this afternoon. Thank goodness, I had already arranged for his dad to meet us at the store, to help with Brady. Brady and I arrived at the store about 30 minutes before his dad got there. Brady started, the minute we walked in the door. He immediately started waving and shrieking at everyone in the checkout lines, and the cashiers. Its funny how he not only requests everyones undivided attention, but demands it. Anyway I found some honey buns on sale, just as we walked in the door. Since they are Brady's favs, I decided to go ahead and get two boxes. Brady didn't see me place them in the cart, and immediately ran over to grab a box of them. I tried to explain to him that he already had two boxes in the cart, but he was so excited, he refused to listen. I took him to the cart and showed him that he had two boxes already and he seemed ok for a little bit. But he decided to open up a box of them, and try to eat them before we even paid for them. Once he figured out that I wasn't going to let him have them, he ran over and grabbed yet, another box of honey buns,lol. I ended up taking all buns away from him and dragging him away from that section. Next we came to the bananas,, which he also loves. I asked him if he wanted bananas, he shook his head yes and grabbed a bushel of them. But he got ticked off when I refused to let him eat them on spot. I dragged him away from them, and put the honey buns and bananas in the bottom of the cart where he couldn't reach them. On the second isle, I decided to put Brady in the cart, instead of letting him walk. We made to the third isle without incident, but shortly after, I noticed something pink go flying by my head. I forced open Brady's hands, to find raw hamburger meat. He had reached back into the cart, tore open the plastic and was throwing hamburger meat as we moved down the isle!!!!!!!!!! But hey, at least the little monkey didn't eat any of the raw meat, so it could have been worse. Thank God, his dad walked in shortly after the hamburger meat incident. I pretty much let his dad deal with the rest of the time we were there. His daddy decided to take him out and let him walk, since he was tearing all the groceries in the cart up. He still managed to grab things off the shelves, he is fast as lightening. The only other problem that we had was his uncontrollable urge to squeeze every loaf of bread that he came in contact with. We managed to get our groceries paid for and get out of the store, without any major happenings, so that was over all a good trip for us. I did let Brady ride home with his dad, for fear that he if he rode with me, he would get loose and have all the groceries half eaten by the time we got home :) Anyways, that's pretty much what we done today. Brady decided not to sleep last night, even after having his sleeping pill. So he ended up playing hooky from school today. Not much else happening though. Gotta sign off for now, Brady is getting into something :) Will post more later.
Just wanted to let you all know that Brady is doing great! He seems to be getting over his ankle injury and will be returning back to school tomorrow :) We have had a busy, but good weekend. We done some yard cleaning this weekend, so Brady enjoyed being outside all weekend. He and Bubba jumped on the trampoline and played in the sprinkler Saturday, while me and dad worked in the yard. Little did we know that Brady tasted so sweet to the mosquitoes, they ate him up! So he is covered in bug bites and scratching like crazy :( We had a good day today. We went with Nana and Paw Paw Travis to the river to ride. Brady had a blast, waving at all the people passing by and on shore, I think every got a good kick out of him. I even let him control the throttle on the ski, of course he wasn't consistent, and would go from 0 to 60mph, no speed in between,lol. We stopped in the middle of the lake and let him play in the water, which he loved. I don't even have to worry about exercising on days like today, he gives me plenty.. Life truly is great these days! Brady's seizures seem to be under control, its almost like getting our lives back, after having to take a couple years time out. The boys are at such a fun age, were just living life to the fullest, keeping in mind they will be grown tomorrow :O No, really, they are growing so fast! I cant believe that my sweet Brady will be 7yrs old next month! My sweet Peyton will be 11yrs old come November!!! I never really understood what people meant, when they said to enjoy the kids while they were little, that they would be grown before we knew it, I totally get it now. I truly do feel like the luckiest mommy in the world,to have been blessed with such special little boys :) Anyways, sorry for the sappy note...... Last but not least, just want to thank all of you who have given to Bradys fundraising page for the ASF. As you can see, we are getting very close to reaching our goal, whooo hoooooo! Gotta hit the hay for now, my little guy is sleeping. Will post more later.
Hey guys! Not sure if I've written in since our second xray, so forgive me if I post this twice. We did get another xray yesterday, as well as a doctor visit. Again, they found no breaks or fractures in Brady's ankle, so it seems that its just a really bad sprain, thank goodness. He has been walking on it today, more than he should and more limping than walking. I was thinking about letting him go back to school tomorrow, but I think it might be wise to give him tomorrow and the rest of the weekend to get better, we don't want to re injure it for a third time. Brady started the day off with a bang this morning. I think we finally got to bed around 3am this morning, but had to be back up early to wait for the respite worker, which never showed :( Brady got up in a foul mood this morning, he was constantly wining. About lunch, I took him to the kitchen to fix some spaghetti for lunch. I decided since he was so cranky, I would let him stay out of the high chair, while I cooked, which I never do. While I was breaking up the spaghetti, to put into the boiling water, Brady decided that he needed to stick his finger to the pretty orange colored burner on the stove. I of course was yelling no, no, no and running that way, but he still managed to get a finger tip on it. After that, there was no consoling him, I know it was hurting, but he was all out mad as well. I had to put him in the highchair to finish and just listen to him scream. After all that, he refused to eat any of the spaghetti! It took a long time for me to get him calmed down, and ended up having to put him back to sleep. He woke up in a much better mood, thank goodness!!!! Oh yeah, I almost forgot to tell you guys, Brady lost another tooth in the midst of all the craziness today,lol. He got up this morning with it bleeding, he had been messing with it I guess. It was just barely hanging on and nearly fell out on its own. So he now is missing two,top, front teeth and one on the bottom front. He really does look like a snaggle tooth now. Not much else going on. Brady is sitting here abusing the poor cat at the moment, but hey, he ain't messing with me (poor cat),lol! I'm not sure why, but this cat has really taken to Brady lately, no matter what Brady does to him. Brady was using my hand to play with the cat earlier, so that I would get bitten and not him, pretty darn smart! I'm not sure that the cat with have ears or a tail after a night with Brady, we don't usually let him inside. Since Brady is having such a good time, I'm going to let the kitty stay in for a while. Anyways not much else happening here. I will post more later.
Well guys, we just got back from our vacation, and had a blast! We took the camper to a beautiful campground in Florida. Brady of course made a ton of friends in the park, but seemed to really take to one of the lady park rangers there :) By the time we left, she was calling him "Blue Eyes". We spent a ton of time in the water, and even with sunscreen, Brady came back with a slight sunburn. We rode the waverunners a lot in the 4 days that we were there, as you can see in the pics. One time when I was riding Brady, we had the coolest thing happen. We slowed down in the water to take a break, and was able to watch 8 or more dolphins swimming all around us. Brady loved everything about the trip, even the hospital visit that he got to make :( So before we left home, we were getting the camper loaded. Brady decided to run straight for the door and dove out head first. I totally freaked and was screaming before I could even get to him. His dad came running out and his brother and Brady was just laying on the ground looking at us in shock. We checked him out, but found only his ankle to be hurt. When we stood him up he didn't want to stand, but seemed to get better as the day went on. He had a big abrasion on his ankle, but seemed ok. So we left that afternoon, heading to Florida. The next day, we were going swimming and Brady stepped off of a log, I guess he twisted the ankle wrong and started crying, refusing to bear any weight on it. So we left about 5pm, taking him to the hospital there, to get it exrayed. We ended up waiting several hours, but the doc said it was just a sprain, which were still not sure is right. He is walking, but very much favoring the other foot. I think if he isnt any better by tomorrow, we will probably go back for more exrays. So yeah, our lives are always filled with drama and excitement, but we still had a blast,lol. Anyways, I am so tired by now, we haven't been home long. I'm heading to bed after I get these pics posted. I will feel you guys in on more details later, and keep you posted on Little Man's foot.
We took Brady riding on the waverunners, for the first time today. He had a blast! He preferred to stand up the entire time, and was moving 100mph! He liked to ride slow, but loved to go fast, guess he takes after his mom,lol. When I was going to slow to suit him, he would reach up and push the throttle to make it go faster, he even tried to steer it a couple of times :) He waved at everyone on the shore and everyone that passed by us. I ended up having to ride with one leg wrapped around him, just to be sure that he didn't fall off. At one point he climbed onto the floor of the waverunner and was dragging his hand in the water. I think thats why he wanted to go fast, so that the water would splash him in the face. When I took him back to shore, he threw a fit, to get back on and ride some more, he did not want to leave. I told my hubby that I wouldn't even have exercise, since Brady gave me such a good workout while riding today. Anyways we had a blast, hope you guys enjoy the pics.
I am a happy healthy 5yr old little boy. I have Angelman Syndrome which makes me even more special. I bring joy to all those who meet me. Just because I am unable to speak, does not mean that I dont have lots to say. I make that very clear to mommy and daddy everyday!
Big Happy Tent is a homegrown non-profit organization started by Marcel Cairo and his family. Our mission is to take Angelman kids and their families camping, surround them with nature, water, music and fun, and let them soak in the wonder and joys of life.
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
Angelman Syndrome Foundation is a national organization of families,
caregivers and professionals who care about those with Angelman
Syndrome. It is also a member organization of the International
Angelman Syndrome Organization (IASO).
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.
