Brady is doing well today,getting over what the doc thinks might have been a rotavirus. Were not really sure,since he hasnt been running any temp. But he does seem to be getting better. He was up in the night,crying like his tummy hurt. So I gave him a pain reliever and let him sit in the bath for about an hour,and he was fine for several hours after that. His magic pill didnt work to well last night,he was up til after 2am,then back up at 4am. Hes still up tonight,hopefully hes going to give up soon. He has been getting along well with his new pup,Bailey. They love to play tug of war,fight over each others toys,and Brady loves feeding her doggie treats. She has been a little rough with him tonight though,she has been getting into trouble. Brady loves to ag her on,so its really not entirely her fault,lol. Well I was helping Craig tonight,for about 2 mintues,big brother was supposed to be looking after Brady. So anyway I came out of my room to find Brady in the bathtub,fully dressed,with scalding hot water running. Luckily he was in the back part of the tub and had just turned the water on,and it wasnt running very fast,so he didnt get burnt. So yet another obstacle. I think were going to build a plexy glass box over the faucet and put a lock on it,so that you have to have a key to get into it. We have to do something or Brady is going to get hurt. Hes always sneaking off to the tub and loves to turn the water on. I try to keep the doors shut,but with an 8yr old in the house,it makes it hard to do that all the time. I went to the bathroom the other day,and when I came out,found Brady outside on the porch. He had opened the door and went out. I swear hes always one step ahead of us. Just when we think we have something Brady proofed,he shows us,lol. Oh and the latest,when I came in from town yesterday,the police dpt had called. Apparently Brady dialed 911 just before we left to pick up peyton at school,so they called back. I knew Brady had the phone,but I thought there was still a dial tone,guess not huh. Dont get me wrong,Im not complaining at all. He keeps it interesting around here,and Im just thankful that my little man is physicaly and mentally capable of doing the things he does. We really are blessed. Oh,the med change is going well,so far so good. I havent seen any changes in behavior,if anything I am seeing improvements in that department. We havent seen any seizures,that were aware of anyway. Well thats about it for now. Will post more later...
Just thought that this was an interesting peice on Harry Angelman,the man who first discovered Angelman Syndrome. Enjoy!
"Biography:Harry Angelman graduated in medicine from the University of Liverpool in 1938. He served with the Royal Army Medical Corps during World War II and spent some time with the military in India before he returned to civilian life in 1946. In 1950 he was appointed as consultant paediatrician at Warrington General Hospital, Lancashire. Angelman retired in 1976.Harry Angelman relates the following regarding his discovery of this syndrome:"The history of medicine is full of interesting stories about the discovery of illnesses. The saga of Angelman's Syndrome is one such story. It was purely by chance that nearly thirty years ago three handicapped children were admitted at various times to my children's ward in England. They had a variety of disabilities and although at first sight they seemed to be suffering from different conditions I felt that there was a common cause for their illness. The diagnosis was purely a clinical one because in spite of technical investigations, which today are more refined, I was unable to establish scientific proof that the three children all had the same handicap. In view of this I hesitated to write about them in the medical journals. However, when on holiday in Italy 1 happened to see an oil painting in the Castelvecchio museum in Verona called Boy with a Puppet. The boy's laughing face and the fact that my patients exhibited jerky movements gave me the idea of writing an article about the three children with a title of Puppet Children. It was not a name that pleased all parents but it served as a means of combining the three little patients into a single group. Later the name was changed to Angelman syndrome. This article was published in 1965 and after some initial interest lay almost forgotten until the early eighties." Personal correspondence, 1991"
Well we just got back from meeting with Brady's school,it went really well. We met with two of the special ed teachers there,one of which will be Brady'sfull time teacher. We also had his previous prek teacher there,and had the school nurse there as well. We looked at three possible options for Brady. The first option was in the Junior High dpt. They have a program set up there,that teaches life skills,washing clothes,cooking,feeding ones self,etc. But this program has mostly teens,so we decided at this point,Brady is just to young. As he gets older and matures,we think it will be a wonderful option for him. The next option was to have him in a regular type classroom,lots of books for him to eat,sinks for him to play in the water,and all kinds of other tempting items. This room would be way to overly stimulating for Brady at this point.But he would be with other kids periodically. The next option,the one that we chose. They have decided to transform the conference room to meet Brady's needs. They will be getting special plug covers to cover up any plugs,moving out anything that might be hazardous to Brady. His teacher and therapists will work with him in this room,and he will have other students come in from time to time,to interact with him. Our goal at this point is to avoid over stimulation,get him used to being away from us and with other adults as well as some children. We didn't want to throw him into a classroom full of kids,it would be to much of a distraction for him and he wouldn't be able to benefit at all. So I guess this way will be a sort of scheduled interaction. They were all very willing to meet Brady's needs and so very helpful. But I think before today,they didn't realise how extensive Brady's needs are at this point. We did explain to them that we are very flexible about most everything,except for treating and preventing his seizures. I did explain that there will be days when Brady hasn't slept,and we might not be there and they were very understanding. I think that they are really nervous,but at the same time anxious to get him there. We talked to the principal and she thinks its a great idea for me to remain on campus for as long as it takes,so that if anything happens,they can call me and I can give diastat or anything else he needs. The nurse is very knowledgeable about diastat and seizures as well,so that's a big relief. She will be there with me,if Brady does have to have diastat. They of course will call an ambulance right away if something happens. As I said though,I will be substituting or volunteering at all times,so I will only be a hop,skip and a jump away. I think in some ways its a relief to us, and the staff that will be working with Brady,so it works out good for everyone. Brady will go to begin with,2 days a week for an hour at the time. When we feel the time is appropriate,we will increase the hours and days. But with never having been away from us,with the latest seizure increase,and the change in meds,we just think its good to take baby steps to start off. But Brady will not start until he is completely on the new depakote,and off the lamictal,since we don't know how hes going to react to either. As I said,they have been wonderful and really put our minds at ease. They have been more than accommodating and eager to work with us on everything. So Brady will be starting Sept 28 if nothing changes between now and then,and we are very excited. I will post updates as they come. Say a prayer for Brady,he just started his new meds today.
Well,were finally back!! We headed out Thursday,to Shriners in Tampa Fl. We made the trip well,and the visit went well. Brady got a little cranky on the way down,but nothing major. But for some reason he thinks its just to funny to poop in his pants when we get in a car!! So he spend the entire weekend purposely pooping every time we got in the car,lol. Anyway the docs at Shriners say that Brady is very flat footed,but not to worry yet. They say that since Brady has sensory issues already,the braces might just make things worse. All of his xrays looked good and they said his chest isn't anything to worry about. Of course Brady had them laughing the entire time,he was completely being a monkey,it was so cute. Brady was even able to get a smile out of one of the most bitter,sour looking men there,so hopefully it made the guys day. Brady meant he wasn't passing by without at least getting a smile,lol.
So anyway we headed out to Daytona right after the appt. We stayed at our Aunts place on the beach,it was really nice. But the trip to get there took 4hrs because of an overturned diesel,yikes!! I was so disappointed that we had to drive right past Disney World and not stop :(
But like I said,we did have a good time. The boys had a blast! I think they started growing fish scales before we left,lol. I have lots of pictures,150 or so,lol. I'm gonna post the best ones here. Anyway we drove home today,it would have been about a 6hr drive,until the tire blew out for no reason!! So we put on the little spare and limped to the nearest walmart,which was 50 miles away. We waited then for over an hour and a half to get the tire replaced,then headed home again. So it took us about 8hrs or so to get home. We are completely wore out and heading to bed very soon. But I wanted to get this post and pictures on here,before bedtime. It really was a great weekend,the boys were both so wonderful and well behaved most of the time.
Oh and Brady loved the goofy golf at our condo,we would hit the ball down to the hole and he would dunk it in,what a big helper he was,lol. Oh and he loved to drink the water that was spraying out in the kiddy pool,at least he wasnt going to get dehydrated,but I think his eye balls were floating before he got out,lol. Anyway talk to ya later!!
Well its been a good day today. We went to see the new neuro. For those of you who dont know,we fired the other neuro,you can read the last post to find out why. Anyway we set up an appt with a new neuro,the earliest they could see him was Oct 5th. So I emailed him to kind of catch him up to speed on Brady's history,seizures,meds,things like that. I explained that I wanted to sit down and make out a seizure plan to take to the hospital here,for when we take Brady in,in status. I also told him that I was emailing him,because it was so in depth and would take so much time to cover,and that I knew it would be hard to cover it all in one office visit. So I wanted him to have the heads up on what to expect. Anyway the following day,the neuro looked up our number and called me at home. He explained some of the things he wanted to cover,he wanted to make sure we had diastat and said he wanted to see Brady today,instead of waiting til Oct. So we just got in from our visit and it went so well!! I think he is the best neuro we have ever seen! We did have one other,but he has moved. Anyway this neuro actually touched Brady,no neuro that we have seen has ever done that,most of them don't even talk or look at Brady. He went over everything in detail,I think we were there an hour. He also typed up a seizure plan for us to take to the hospital,in detail. It tells what Brady has,what it is,what kinds of seizures he has,what they look like and step by step,what meds to give to stop the seizure. They are to try each step and if it doesn't stop,move to the next step,it even has all the doses of meds to give. The last step on the page says,if they reach this step,call this number and have Brady transferred down to him. He gave us a plan for the school,cases for diastat,both at home and school. He gave us a binder that has a seizure calendar in it and some other info on seizures,its really nice. He wants us to come back in Oct for blood work and an eeg. And he did change Brady'smeds,he will come off the lamictal first,he added dapakote and increased the keppra. Eventually he wants to get Brady off the topamax as well. He was extremely knowledgeable about AS,unlike many neuros we have seen. I was amazed that he actually knew what I was talking about when I mentioned things about AS to him!! We are just very excited. Craig and I were laughing earlier,most people wouldn't understand our excitement over getting a neuro that actually cares. We have been through so much ,this is a huge deal. We said it seems almost like Christmas and we just got the best present anyone could ever get,lol. I really was getting so discouraged,it seemed like none of the doctors,other than our ped,really cared about Brady. It was like they either didn't realise,or didn't care,that Brady's life was literally in their hands. Anyway that's about it for now. Im wore out,so were going to bed soon,I hope!!! Oh yeah,Bradysped put him on clonidine and Brady has slept two nights in a row,whooohooooo!!! Last night was the first night I have slept in my bed in so long,I almost forgot what it felt like,lol. So thanks so much to all of you have been praying so hard,thanks so much to our wonderful ped and now wonderful neuro!!!!!
Oh quick story!! While we were checking out at the neuros office today,there was this adorable little girl that was standing at the checkout window,obsessively admiring a plastic M&M on the other side of the checkout window. So as I was checking out,she would move my hand off the counter so she could get a better look. She even kind pushed me away a couple of times,lol. Her mom tried to call her back,but she didn't want to leave that M&M,lol. So I told her mom,its ok I understand and shes not bothering me. Im very used to it. So everyone kept thinking the little girl was my child. We started out the door,meanwhile the little girl stayed behind at the checkout window. A woman came in the door pushing a stroller and got this bamboozled look on her face and was looking at us like OMG!!! She finally said uhhh mam,does this little girl belong to you!!! I just busted out laughing and said no shes not mine,lollol. And her mom said oh no,shes belongs with me. The woman thought that I was forgetting to take my child with me. It was hilarious,we were all laughing. I said to Craig when we left,I should have told her,yea shes mine,but im gonna leave her here to play by herself in the clinic tonight,lollol. I said she prob would have called the cops right then,lol. Anyway just thought it was to funny.
Brady is doing well. He started his new sleeping med this past week and has been sleeping much better. He is actually sleeping at the moment. I feel likes its going to wear off soon and hes going to wake up. So Im just hanging out,waiting and watching. Hes been in such a sweet mood today,but is turning into a bit of a mamas boy I think. Anyway we are really excited,we finally found a new neuro,which actually called us at home today!!! That is definitely a first for us. Looks like Brady is going to be changing his meds from topamax,lamictal and keppra,to keppra and depakote. I really hope that the change is going to be good for him,I think that without all the side effects from the other meds,his progress is going to be amazing. So keep your fingers crossed,that it all works out. The neuro really sounds great,were going to meet with his on Wed of this week. Anyway,thats it for now.
Well we started the clonidine for sleep last night,and Brady did wake a couple of times,but never got up. He seemed so rested today,and had a great day. He played outside this afternoon,in his water table,literally in it,lol. He doesn't like to just stand beside it,he has to climb right up in the middle. He has been in a good mood all day. Hes such a joy to be around,we have the best time together. He loves to sit in my lap and play,hes such a mamas boy. Brady has really been on top of things today though. He drank all of his cup,then took the lid off and took the nipple out. Later on he brought me the cup and the lid,but he couldn't find the nipple. He wanted something to drink,so we had to get another cup. I know this might seem so small and unimportant to some people,but were really proud of him. He knew that he had to have both the cup and lid and he brought it to us. Well later on he brought me a diaper and was fussing at me,he wanted to be changed. I just laughed and told him to take it to daddy,and he did. Then he started telling his daddy off,he wanted to be changed right then,lol. Hes been playing with his new pup,Bailey,tonight. They are going to be lifelong friends I think. Brady butt scoots in circles and she chases him barking. Brady thinks its the funniest thing ever. They also like to play hiding seek from one another,its so cute. I think Bailey is going to be so good for Brady and our family. Oh yea,Brady and Bailey love to share each others toys. Bailey had Brady's toy chewing on it tonight and Brady got Baileys toy and started chewing on it,gross, I know,but what do ya do,lol. Things are looking up for neuros as well,we have an appt with a new one that is supposed to very approachable and personable,so please say a prayer. We have an appt on Oct 5th. Well thats about it for now. Share more later.
Ok as many of you know,Brady had a bad seizure Friday morning about 3:30am. He had two tubes of diastat,which is dangerous in itself,not to mention how dangerous his seizure was,45 minutes long at the least. Well we had been trying to get up with the neuro to find out what to do,while Brady was at the hospital. The ER docs dont know what to do with Brady when he comes in with seizures,and really need guidance. His life depends on this. Our ped does everything he can for Brady,we are truly blessed to have him,but he is not a neuro and not trained specifically in that field. The neuro finally called our ped back Monday,lot of good it done,since this all happened Friday!! So anyway we went back to the neuro for the second time ever,today. She walked in the door defending the fact that she didnt know about Brady's being in the hospital,until Monday. So we started talking to her about what happened and asked what we were supposed to do if Brady has a seizure after hours or on the weekend. How were we supposed to get up with her. Well her response was,that she was glad our peddidn't get up with her,wake her up. She appreciated the fact he didn't call her at that time of the morning. And that if all her peds called her at that time of the morning,she wouldn't be able to function the next day,she would be to tired. So basically if we have a problem after hours,tough luck,our problem. I guess we should just tell Brady to not have a seizure until its time for her to be at work. I was absolutely disgusted!!! It took everything I could do to stay on my chair!!!!!!!!!!!! I bit my tongue so hard,it nearly fell off!!!! She also pretty much told us that she didn't want to treat to Brady,that we needed an epilepsy specialist. I mean this lady is a pediatric neuro,what good is she if she cant treat seizures!! She pretty much lost me after she started talking stupid,pretty much when she first walked in. I knew right away,she was fired,no questions asked. She is the most uncompassionate human being I have ever met. She absolutely could care less if Brady is laying up in the hopsital dying,as long as she gets her beauty rest!!! Does she think that we get loads of beauty rest!! We spend out nights worrying and waiting for Brady to have another terrible seizure. We live our lives wondering how long we will be able to keep our baby boy with us. We hired her to do a job,and that is guide us through treating Brady's seizures and keep him as safe as we can. It wouldn't kill her to get on the phone for 5 minutes and tell them what to do for him at that time. Its not like were asking her to get out from under her warm sheets and drive down here!! But since it isnt convenient for her, we just have to do the best we can! Needless to say,shes fired,we wont be going back to that quack. People really wouldn't believe how rude she was. Did she not realise that she was talking to two overly stressed,sleep deprived parents?? We now have to find a new neuro,before another bad seizure. Brady is maxed out on his topamax,lamictal,and now nearly maxed out on keppra. So we have to find a neuro ASAP. Why is it so dang hard to find a neuro that you can reach after hours in case of an emergency?? Didn't these neuros take an oath to look after their patients?? Why aren't they doing so??? Did that oath state that they would only look after their patients during business hours,otherwise your just out of luck!!! I just keep saying that you have to go through a lot of bad apples to find a good ones,but shoot the barrel is nearly empty! I'm so frustrated right now. I have been on the verge of tears all day. Its such ashamed that with the technology in our world today,the advancements being made everyday,that we our Brady still cant get the care he deserves. I cant guarantee him and everyone else out there,I refuse to give up!! I will get what he needs one way or another! He depends on me and I will not let him down! I am at my wits end and dare a neuro to ever speak like that to,around or about my little boy,ever again!!!!!! Im sick of biting my tongue,trying so hard not to burn bridges as we go along! Anyway I think we have found a neuro,about 2hrs from here. Im going to do some calling tomorrow to see about getting Brady in. I will keep you posted on what we find out. If it were not for our ped,I dont know what we would do. I feel like we are doing something wrong,by wanted to neuros to get to know Brady and his history,and by wanting the very best care for him,is this unreasonable?? Oh well,I'mdone ranting for now. Wish I could say that this wont happen again,but there is a good chance it will.
Just wanted to let everyone know,that our little Angel Friend,Elijah, has gone home to live with Jesus and his fellow Angels. His little body was just to tired and weak to go on,from the seizure that he had. His family had to make the heart wrenching decision to remove the ventilator. They are truly an amazing family,and are keeping strong with their faith. But I ask that you please pray for his family and ask God to give them strength through this terrible time. We are all mourning the loss of this precious little boy,it is just heartbreaking. Elijah was a young,3 yrs old,but I am so very sure that he touched many lives in his short time here on earth. He will be greatly missed by all. So please join with me in prayer for this special family.
Well Brady is doing well. Still sleeping a lot,and very droopy,but better. Were going to the doc tomorrow to find out what the next treatment plan is,hopefully. I'm just so very thankful to have my sweet little boy home,and on the road to recovery. I feel extremely blessed,but at the same time feel so very sad for little Elijah,his family,and others that are going through such tough times right now. Elijah is our Angel friend from NZ,that is in the hospital due to a long,traumatic seizure. His dad took some time this morning to let us know that things aren't looking good for their precious little Angel. It seems that the seizure has really taken its toll on his little body. He isn't expected to be with us much longer. So please pray for this family,they need all the prayers and support that we can give them. My heart is just breaking for them,I cannot begin to imagine what they are going through. All that we can do is just pray. So please take a moment to say a very special prayer for them.
Brady he is home and doing well. He acts kind of like a drunk person. He will lean forward and just tip on over,or the same with leaning backward. He acts really doped up,but hasn't had anything since the diastat at 3am. He usually has a long recovery time when he has a bad seizure,so its to be expected really. Anyway it all started at 3am this morning. I was sitting in the chair watching a movie,and Brady climbed up in the recliner beside me and went to sleep. He had been sleeping,or so I thought,for about 10 or 15 minutes,when I got up and walked over to check on him,like I always do. I have a habit of checking on him every so many minutes. Anyway When I got around to the front of him could see that he was jerking. I tried talking to him for just sec,but of course he didn't respond. So I yelled for my husband to get up and get the diastat while I took Brady back to the living room and lay him on the couch. I tried to take his pjs off to give the diastat,but they wouldn't come off,because his legs were straight as a board and super stiff. So finally I ended up just ripping the pjs off so that I could get the diastat in him. Well,a few minutes after the diastat was given,he was still seizing,which hes never done after diastat. So we got the other tube and gave it,knowing that he was going to the hospital one way or the other. We ran out,in our pjs,no shoes,door unlocked and jumped in the car to go the hospital. About 30 to 45 minutes,,maybe even a little more,had passed,when finally he stopped seizing on the way to the ER. But he became completely limp,had no control over his limbs or head,and was totally unresponsive. I really had prepared myself that I was going to have to do CPR. I just really felt that he was going to stop breathing,either from the seizure or the extra diasat. Btw,the docs did tell us to give the diastat back to back in an emergency situation,if needed. So anyway,we got to the ER,I told the lady at the front desk,we didn't have time for paperwork,open the door and let us back. They didn't do anything for Brady. They did start a needle,just in case he had to have ativan,which I suggested he might. They never started a drip,or anything. They had no clue as to what to do for Brady and openly admitted that. We still dont know what were going to do about Brady's meds,there will be a med change of some kind. Our ped couldn't get up with our neuro,no surprise. So were meeting with our ped on Monday to discuss what were going to do. We will most likely go back to the neuro next week,and the endoscopy with the GI doc,will be canceled until we get the seizures under control. I told Craig,this morning was the first time that I have ever really felt that I might loose Brady. I actually felt sick on my stomach,and had so many,what if,thoughts running through my mind. He has had so many seizures before,but I never really had that feeling that it was life threatening,until this morning. I know that if I would not have been awake,and caught the seizure in time,there is a strong chance that we would have lost him,I just don't know how I could survive that. I told my mom,now everyone can understand why I don't sleep,even when he does. He depends on me to look out for him. Oh btw,we did have blood work done to check for sickness,but everything was normal,or so they said. We cant figure out what has changed to make him start having seizures again,we thought maybe he was becoming somewhat immune to his meds,he has been on them for a long time now. Or we thought that it just might be the heat,it has been up around 103,with a heat index of 110 to 116,so its been smoldering. I will keep you posted on what we find out and how things are going. I also wanted to mention,please keep our sweet little Angel friend Elijah in your prayers as well. Elijah is in the hospital from bad seizures. Here is his blog, http://elijah-angelstory.blogspot.com/ Elijah lives in NZ. Big hugs to them.
Brady is home and doing well. He acts kind of like a drunk person. He will lean forward and just tip on over,or the same with leaning backward. He acts really doped up,but hasnt had anything since the diastat at 3am. He usually has a long recovery time when he has a bad seizure,so its to be expected really.
Anyway it all started at 3am this morning. I was sitting in the chair watching a movie,and Brady climbed up in the recliner beside me and went to sleep. He had been sleeping,or so I thought,for about 10 or 15 minutes,when I got up and walked over to check on him,like I always do. I have a habit of checking on him every so many minutes. Anyway When I got around to the front of him could see that he was jerking. I tried talking to him for just sec,but of course he didnt respond. So I yelled for my husband to get up and get the diastat while I took Brady back to the living room and lay him on the couch. I tried to take his pjs off to give the diastat,but they wouldn't come off,because his legs were straight as a board and super stiff. So finally I ended up just ripping the pjs off so that I could get the diastat in him. Well,a few minutes after the diastat was given,he was still seizing,which hes never done after diastat. So we got the other tube and gave it,knowing that he was going to the hospital one way or the other. We ran out,in our pjs,no shoes,made them get me some socks at the hospital though,we left the door unlocked and jumped in the car to go the hospital. About 30 to 45 minutes,,maybe even a little more,had passed,when finally he stopped seizing on the way to the ER. But he became completely limp,had no control over his limbs or head,and was totally unresponsive. I really had prepared myself that I was going to have to do CPR. I just really felt that he was going to stop breathing,either from the seizure or the extra diasat. Btw,the docs did tell us to give the diastat back to back in an emergency situation,if needed. So we got to the ER,I told the lady at the front desk,we didn't have time for paperwork,open the door and let us back. They didn't do anything for Brady. They did start a needle,just in case he had to have ativan,which I suggested he might. They never started a drip,or anything. They had no clue as to what to do for Brady.I made them call our ped and he admitted Brady today. I think it must have been about lunch time,before Brady even opened his eyes again. He has been totally out of it. But by tonight,he was eating,drinking,ripped out his IV,blood everywhere,tore off his monitors,yanked out his oxygen, and was drunkenly trying to climb out of bed. Oh and he figured out the buttons on the bed,so we were folded up like a sandwich in it several times,it was like a fair ride,up and down,lol.
We still dont know what were going to do about Brady's meds,there will be a med change of some kind. Our ped couldn't get up with our neuro,no surprise. So were meeting with our ped on Monday to discuss what were going to do. We will most likely go back to the neuro next week,and the endoscopy with the GI doc,will be canceled until we get the seizures under control.
I told Craig,this morning was the first time that I have ever really felt that I might loose Brady. He has had so many seizures before,but I never really had that feeling that it was life threatening,until this morning. I know that if I would not have been awake,and caught the seizure in time,there is a strong chance that we would have lost him. It just makes me sick on my stomach to think how close we were to possible loosing him.
Anyway,I will post more later. Hopefully we can get some answers real soon.
Well just wanted to let everyone know that we are going to pick up our new pup tomorrow. We had a Saint Bernard for 6yrs,that we all loved very much,but she passed away last Friday. Brady doesn't care much for animals,but truly loved her. He loved to climb on top of her and pull her hair and just lay on her. She didn't seem to mind at all,she was very gentle with him. We know that its going to take a very special dog,to connect with Brady and to be patient with his constant torture,so we decided to go with another Saint. I will post a picture of her before I leave his blog tonight. And of course I will takes lots of pictures of the two of them together after tomorrow. Were really sad about loosing our other dog,but excited about our new pup. I just hope that she and Brady will connect and that she will look out for both the boys. Anyway I will let ya know how it goes. Were keeping our fingers crossed.
Motor development delay Fits of laughter Absent speech Microbrachycephaly Blond hair ,not always. Eye anomalies ,not always. Decreased eye pigmentation,not always. Pale blue eyes,not always. Maxillary hypoplasia Deep-set eyes,not always. Large mouth ,not always. Tongue protrusion Widely spaced teeth,not always. Protruding jaw,not always. Ataxia Jerky arm movements Puppet-like gait Characteristic arm position Arms held up and flexed at wrists and elbows Seizures Major motor seizures ,common,but not always. Akinetic seizures ,common,but not always. EEG abnormalities ,common,but not always. Reduced muscle tone Hyperreflexia Cerebral atrophy Sleep disturbances
Please note,that there are different degrees of Angelman Syndrome. Some children may have certain symptoms,associated with Angelman Syndrome,but may not have all symptoms listed. Now with all that said. Also note,that AS is not a disease,it does not shorten the individuals lifespan,it is a syndrome. And I believe that many of the actions of individuals with AS,stems from the lack of communication. I think that they do many of the things they do,because they cannot communicate in any other way. I do however believe that they understand and comprehend much better than the literature expresses. I know that Brady is very intelligent,but just does not know how to express himself sometimes. Or son Brady has Angelman Syndrome,he truly is our little Angel. Angelman Syndrome is not who Brady is,but it does play a big role in his life and in our lives,on a daily basis. Brady would most likely not be the person that he is,if he didn't have AS. Brady never passes judgment on anyone,he knows how to slow down and enjoy even the smallest things in life. He is happy most of the time,and can make you laugh even in the saddest moments. Brady is a show off,a bit of a monkey actually. He lives to make you laugh and loves to entertain. I often say that if missing part of your Chromosome 15,makes you as precious,sweet,loving and happy as Brady,then more people should have their chromosome removed,lol. Don't get me wrong,its not always a walk in the part and I wont pretend that it is. We deal with a lot of issues because of Brady's AS. This is not a life I would have chosen for myself,but this is the card I have been dealt,and my sweet little Brady helps me make the most of it. You look at families like ours and wonder how we do it,I know I used to. But in all reality,Im glad that God chose us to look after our sweet little Brady. We just didn't know what we were missing out on. Brady does have epilepsy,due to AS. He is up to about 5 different types of seizures now and is currently taking 3 meds twice a day to control the seizures. Brady has feeding issues,balance issues,sensory issues,and much more,all due to AS. We have fought to get financial help for Brady,three years now actually. Things like that are not just given to you,in most cases anyway. We have had to fight to get what Brady deserves,and I feel confident that we will continue to fight for him as he gets older. Before you have a disabled family member,you think,well I have paid taxes in all my life,so when or if I ever need services,it will be there,wrong. You think that you are doing good when you pay in to the government,because one day you might need help. But after you have someone disabled in your life,you realise that these services don't come easily,and in most cases you have to fight for what you get. We are Brady's voice, because he cannot speak,due to AS. We are his advocates,because he cannot advocate for himself,due to AS. Much of Brady's life revolves around issues that pertain to his syndrome,doctors appts,therapies,school issues,very little sleep,etc. So with all the doom and gloom statements being said,we love Brady. I cannot post only the good things about our lives,as there are bad things that come along with is as well. I wouldn't be fair to anyone to post only good things,because there are bad things that come along with AS,just as there are other bad things in many peoples lives who don't care for someone with AS. I just want everyone to understand that,though there may be bad things,there are many good things as well. Brady is a blessing,not a burden, I want to make that very clear.He does have Angelman Syndrome,and no denying that he suffers on occasion,due to AS,is ever going to change that. God made Brady who he is,for a reason. We may not always understand those reasons,but he is who he is, and we love him never the less. The goodness in Brady makes up for any other bad things that we have to deal with. Brady brings new meaning to the word life. He wakes in the morning with a smile on his face,when he sleeps that is,lol. He always has tons of slimy sugar and lots of big hugs to give. He is not prejudice and will share his laughter and love with anyone,cant say that about many people these days. Brady has truly brought our family closer together and made us realise that we can face any situation,no matter how big or small,as long as we face it together, as a family. Brady is such a joy to be around. He makes friends everywhere we go. Brady lights up the room when he comes in,people just seem to be drawn to him. I cannot begin the express the love that I have for him,he is my healthy,happy,sweet little Angel,and will always be. Even if we try to deny that Brady suffers at times,mostly due to the fact he has AS,or if we try to look the other way when he does something super embarrassing in a public place,or if we would love for him to be able to do things that his typical peers can do,but accept the fact that he just cant,it doesn't take away from the fact that he does have a disability,it is called Angelman Syndrome,and its not going away. But it doesn't mean that we are giving up on him or that he wont lead a healthy happy life. It just means that that we do accept him no matter what. His life is what it is,and we will make the most of it. AS is something that he will most likely carry with him for the rest of his life. God chose Brady to have AS,and chose our family to have him,and we feel honored that God trusted us with that kind of responsibility,and that he chose us to look after his perfect little Angel. And I think that by denying or overlooking Brady's disabilities,would be doing an injustice to God,Brady,our family and other families that have loved ones with AS or other disabilities. God has a purpose for Brady's life,and I see that daily. He teaches people what pure love and innocence is all about. We can all learn from the Brady's in the world,if we just open our hearts and listen. We have to teach the world that there are people with disabilities and that's never going away. Were not going to lock them up somewhere and forget about them,they are here to stay. We have to adapt the way that we live,so that people with disabilities can be given a fair chance. If you think about it,we are all disabled in one way or another,just some more so than others. We all have our problems,depression,diabetes,obesity,high cholesterol,arthritis,and the list goes on. We have to learn to not try and change,hide or overlook people with disabilities,we have to learn to accept them with open arms and do what we can to make a place for them in this world. Disability is on an all time rise in our world today. There are more disabled people than ever before in history. Its only going to get worse,we just cant hide or deny it. Disorders such as Autism are becoming more and more wide spread. So my point is,accept the things you cannot change,but change the things you cannot accept. We have to pave the way for future generations,its time to start teaching and educating about living life with disabled people. There is a good chance that someone in your future,in your child's future,will suffer from a disability. Remember,we all think it cant happen to us,until it does. There are many things to focus on,and its ok to focus on the positives,that's what we try to do. But it doesn't mean that there aren't many negatives,and no amount of denying is going to make the negatives go away. We have to learn to take the bad with the good. I know this is controversial,and I apologize in advance if this ticks anyone off. But I feel that there are things that need to be said.
Ok,a funny story,or I think it is anyway,lol. This weekend we went goofing off,and went to some flea markets out of town. We really didn't plan on buying anything,just looking. So I was pushing Brady down the extremely crowded isles,looking at each booth,when Peyton decided he wanted a pair of sunglasses. So we all stopped,but I pushed Brady a little farther ahead so he couldn't reach the sunglasses. While Peyton and Maw maw purchased Peyton's sunglasses,we waited. I noticed a man standing in front of Brady and he was smiling at Brady,almost laughing on the inside,it seemed. So I thought hmm,wonder what Brady has done now. I leaned around Brady to see what he was doing,and he was chewing on a brand new pair of pretty pink sunglasses,with the tags still on them!!! I quickly grabbed them away from him,walked over and handed them back to the vendor and apologized. My little shoplifter!!!!!!!!!! The man seemed unphased though,he just laughed and put them back on the box. I didn't check for teeth marks and neither did he,lol. I told Craig that if we had walked any farther away from that vendor before we found those glasses,we would never have known where they went,we would have just had to have kept them. I'm so glad that we found them in time. Oh I hope those people dont think we use our kid to shoplift,lol lol... Thats not the first time that Brady has added things to our shopping though. We get to the registers after shopping sometimes and find that Brady has a handful of things. Usually we do find them before we get to the registers though. But we do find items,that Brady thinks he needs to keep, in our buggy all the time,hes so helpful,lol. Im just waiting for the day that I go to jail for my little Angel shop lifting,lol lol. I hope you all will come and post my bail!!! Anyway Brady seemed to have a good time this weekend,he watched all the people and of course tried to turn over every garbage can that we went past. I tried my best to keep him away from any breakables,lol He did manage to snatch some clothes off the shelf and nearly turned over an entire stack of cleaning supplies. But we did make it back with nothing broken,spilled,or stolen,so that meant it was a successful trip,lol.
Well that's about it for now. I promise I will post pictures of Brady by Friday,so be sure and check back then. I'm charging my camera battery now.
Well,Brady is doing well these days. His eating habits are still sporadic. I'm going to call today and get his tests scheduled. I think its best to try and figure out whats going on with his non eating. We have now moved the tv and computer to the therapy room. Things were just getting to dangerous in the living room. We couldn't keep him in,since he figured out how to get out of all the gates and the back door. He was climbing over the rail to the kitchen and trying to go up the spiral stairs. Sooo,we are now in the therapy room. He has lots of toys and loves to strew them all over the room. Its ok because there isn't as much through traffic back here. And the bonus is that he cant get out the doors,yet anyway. He hangs out a lot in the ball pit,but loves to throw the balls all over the floor. He loves for me to roll backward in my desk chair,it rolls easily on the tile floor,which btw,is so easy to clean up. Anyway he walks in front of my chair while I roll around. He has been walking all over the room,by himself tonight,whoohooo!! I did have to move the ball pit,it was beside his hot tub,and he decided to climb on top of the hot tub and crawl across. That was only after he was trying to climb in,so I had to close the top down tight. That little bugger cant find anything to get into,lol. But seriously it is great here. I have his diapers up in the cabinets,so he cant strew them all over. I even have a cabinet for his pediasure,its really convenient. I call this the convenience room,lol. Its got a sink,hot tub,tv,recliners,ball pits,tons of toys,lots of cabinets,its just got a little bit of everything,lol. Before Brady came along I would never dream of having a room with such variety,but I guess you do what you have to for your kiddos huh. Anyway I will keep ya up to date on the tests.
I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day.
My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.
This
downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.
The AS Forum was created in April
2005 and provides an easy way for family members and carers of
people with Angelman Syndrome (AS) to exchange information with each
other.
The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
