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Wednesday, October 31, 2007 |
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Brady is getting better. Still no word on the surgery as of yet.
We went trick or treating tonight. Brady had a good time,but tired very quickly. He hated wearing the hood on his suit,but done really well otherwise. Anyways Im tired,so I will give a better update later. |
posted by angelwings
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10:20 PM
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Thursday, October 25, 2007 |
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| Well we just got back from the doc,again. Brady has an ear infection and croup. We were going to give him a steroid by mouth,but the croup his progressing so quickly,we dont have time to wait for it to get in his system,so he had to have a shot this morning. He woke up,burning up with a temp and was wheezing every breath he would take in. So hes on an antibotic for the ear problems and had the shot for the croup.His brother has croup as well,so hes on a steroid as well. Anyways Brady is fine,his leg is sore from the shot,and hes not a steady with his walking at the moment,but hes doing ok. I will post more later. |
posted by angelwings
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2:55 PM
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Monday, October 22, 2007 |
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| Just wanted to let everyone know that Brady is doing so well. He continues to gain new skills,seems like on a daily basis now. At the moment,he is walking around picking up things,bringing them to me,the desk is getting pretty full by now,lol. Anyway even though Brady has been walking,he hasnt been able to get himself to the standing position without pulling up on something. Anyway he started this afternoon pushing himself up on his arms,with butt in the air,and standing all the way,not holding onto anything. I think he knows he has learned a new skill,and has been practicing all night,were so proud of him. Oh we tried on Halloween costumes tonight. Brady just thought it was the funniest thing he had ever seen and done. He was strutting all over the place,once as a spider,once as stitch and once and a dinasour. Were not sure which he is going to be just yet,but you can bet which ever it is,he will be a giggling little monster,lol. Halloween,Thanks Giving and Christmas are going to be so much fun this year,since hes walking,I cant wait!! Well thats about it for now. I will post more later. |
posted by angelwings
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10:48 PM
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Sunday, October 21, 2007 |
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Brady is doing really well these days,other than fighting off what we think might be an ear infection. He seems to be adjusting to his meds,finally. He has been really eating lately,and is starting to refuse the pediasure sometimes,seems its just not filling him up anymore. He has started something really cool lately,he plays with these plastic containers that doritos came in. Anyway he will go and get one of these containers,and bring it to me,to let me know hes hungry. So hes creating his own pecs,lol. Were really proud of him,and his communication skills these days,hes doing really well.
We have noticed some small drop seizures in the last couple of days. He had three last night,but didnt fall to hard,so that was good. Still waiting to hear about his surgery. I will post more later. |
posted by angelwings
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10:26 PM
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Friday, October 19, 2007 |
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| Brady is doing well today,but still running temp. He and his brother both decided to get sick at the same time. So their doing double shots of motrin,lol. Brady has been super sweet today though,we have had a good day,considering. He is really mastering climbing up and down the steps in the camper now,so check out the video of him climbing Still no news on the surgery yet. Oh and we got Bradys medical bracelet in today,it looks really cool. Of course he had that sucker off within a few seconds after I put it on him,lol. I had to take a sewing needle and add a couple of stitches into the velcro,to keep him from being able to take it off,so far so good. Hey at least my Home Ec skills are paying off,lol.Anyway,will post more later. |
posted by angelwings
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1:38 AM
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Wednesday, October 17, 2007 |
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Well,Brady had a good day today. We went to town and he really enjoyed showing off his newfound walking skills. He got so much attention and even got hold of a couple peoples glasses,lol. Anyway he started fussing this afternoon,holding his ear,and is running a fever now. So I guess we will be seeing the doc tomorrow for an ear infection. Im hoping and praying that this doesnt cause seizures. Hopefully we can catch it soon enough to prevent them.
Brady has learned a new skill though,he has learned to climb up the steps in the camper,and after showing him only once,how to butt scoot down the steps,he picked right up. He has been going up and down them. Mastering steps is a big deal for him,hes never been able to do them before,he would try to come down head first. So were very proud of our little man.
Anyways I will post more later. Still havent heard back about the surgery yet.We do have a GI appt coming on Nov. 8th,so were anxious to see what they find.
BTW,thanks to everyone for checking out Bradys blog lately,it is amazing to see so many people visiting. |
posted by angelwings
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10:24 PM
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Tuesday, October 16, 2007 |
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posted by angelwings
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9:52 PM
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Monday, October 15, 2007 |
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Well,Brady has had a pretty good day today. He has fussed some,but for the most part,things have been better. Brady has been gaining so many new skills since he has come off of the lamictal,despite the affect that the depakote is having on him. He is walking all over the place now,and getting much more comfortable with it. Yesterday,he got a diaper and a can of pediasure,went over,lay down on the pad that I change him on and held up the diaper and pediasure to me. He wanted to be changed and wanted a cup,it was so cute,lol.His comprehension has improved so much,its really amazing to see him grow. He has had such a rough time lately,I am amazed at his strength,we could all learn so much from him. Anyway another thing that he done,which I thought was cute,he disappeared,so I went to find him. I found my bedroom light on,then the bathroom light on,and the tub water running. It cracked me up,because he would have never thought to turn the light on before,but he turned both lights on,so he could go play in the water. Hes graduated up from playing in the toilets,now that can turn the water on,lol.
Brady is also eating better,for two days,we haven't been able to fill this kid up! Hes eating things that he has never had interest in before. Were very proud of all his new skills. Oh and he loves to throw balls and anything else that he can find,of course were learning to duck quickly. But were still very proud of his newfound skill. I think we might have a little baseball player on our hands!
One last note, I found out today that Colin Farrel's son James has Angelman Syndrome. Its so wonderful that Colin is being so very positive about his little guy,and about AS. Since Angelman Syndrome is so rare and often misdiagnosed or undiagnosed,this is such a great opportunity to help raise awareness and further Angelman research,and help those families that still need answers. I cannot imagine what this family has been through as far as being in the public eye all the time. I know that in the beginning privacy was such a huge issue for our family. It is so important that we,as newly diagnosed families,have time to digest such life changing news,in the privacy of our homes. And it is equally important that we be able to find support in other families that are going through the same things that we are,no matter how big or small they might seem to those on the outside. I do wish that there were a way for us to reach out to this family,as Im sure things can be very tough for them at times. Anyway copy and paste this link to your browswer http://www.celebrity-babies.com/2007/10/colin-farrell.html to read more about this story,what a wonderful family. |
posted by angelwings
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10:58 PM
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Wednesday, October 10, 2007 |
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Well Brady started the day off with a bang this morning at 4am. He slept a few hours last night and was up at 4. Even after all the sedation yesterday,and still not going to sleep,he stayed up til midnight last night. I figured once he went out he would be out for a while,but he fooled me as usual. Anyway he cried from the time he got up at 4am til 9am. He was so tired,that he was just beside himself. I finally had to give him a sleeping pill so that he would get some rest. He slept from a little after 9am,til about 6pm tonight. He is feeling much better now,and is a great mood,but Im sure he will be up all night tonight. It was worth him sleeping all day though,I was getting worried about him because he was so exhausted. He is walking all over the place tonight,it still feels so strange to look up and see him walking to me,instead of crawling,but its an amazing feeling.
I called today and gave the doctor the go ahead with the VNS. They are going to get things set up and call us back with a time. I know in my heart that this is the right decision for our little man. He has battled so many different types of seizures,up to 5 types now,and has battled the terrible side effects from the meds hes been taking. We have to give the VNS a try. Even if he gets just a little relief,it will be all worth it,anything is better than what hes been going through lately.So I will post more later when we get the surgery set up. Please continue to pray. |
posted by angelwings
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10:55 PM
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Tuesday, October 09, 2007 |
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well,its been another exciting week here in our house.. Brady went to bed Sunday night,and was sleeping between Craig and I. About midnight,I felt him moving strangly so jumped up and turned the light on to see him seizing. We gave him diasat after about 5 minutes,but chose to take him on the ER,since hes having such a time with seizures lately,and because hes in the middle of a med change. They admitted him and we stayed up all night and all day the next day. He finally woke up and came alive about lunch time the next day. He was trying to rip out his IV and was getting wild. We knew at this point that the worst was over and it was time to go home by then. Plus we needed to get home and get some rest before we had to go to the neuro today. So we were released about 2pm. Brady is doing well,but has had a rough day today. We went to the neuro at 9:30am for an EEG. He was given meds to sedate him,but he didnt get to sleep,he was just extremely drunk. I have to say it was amusing watching him,lol. I never dreamed I would get to see my Angel drunk,lol. When the meds kicked in,he started laughing in this really deep voice,like an "ohhh I feel good" kind of laugh,lol. He would sit up and just fall back in the bed,and just laugh. He really had no cares in the world. So anyway they then gave him benedryl,which I explained prob wouldnt work,but dont think they believed me. Anyway this was all between 9:30am and 11am,and he has just now at 11:43pm,fallen asleep. He stayed pretty drunk most of the day,but the happiness wore off around 2pm. Anyway as I said,I warned them about the bendryl,and explained that the other med might not work as well. I think Brady really changed their outlook on things,lol.
So back to the appt,we did see the doc,with no EEG of course. We are increasing his depakote,yet again. Meanwhile,we have to make a decision as to whether or not we want to do the VNS. The VNS is a sort of pace maker,put in the chest,or under arm area,that sends off scheduled electric charges,to break up seizures. If he goes into status we can use a magnet to activate it and stop the seizure while it is happening. Were not sure what were going to do yet,we really have to think about it,and pray heavily before we make a decision. Anyways I will keep ya posted. |
posted by angelwings
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11:36 PM
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Thursday, October 04, 2007 |
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Hi all
Brady has been doing good. The drop seizures are finally subsiding. He had some last night,or should I say this morning about 3am,but prob cause he was tired. I tried my best to tire him out so he would go to sleep last night,but I think he tired me instead. I put him in the bath around 3am and let him play for a while. But he still wasnt tired. Once he was out,he couldnt be pleased. He brought me a can of pediasure but didnt drink that. So I got him a bag of cheese curls,which he ate all of. He still acted hungry,so I got him a honey bun,which he ate all of as well. He then brought me the empty bag that the chips had been in,to let me know he was still hungry. So I decided that junk food wasnt going to fill him up,so we went to the kitchen. I put him in the high chair and cooked him some mac n chesse,which he ate an entire plate of. So finally he acted tired,and we went to bed. Not sure what time we went to sleep,last I looked at the clock it was sometime around 5am.
So we got up and went to town,where Brady decided to totally show out. He walked pushing the buggy through the store,and done great,but tried to clear off all the shelves and was grabbing everyone that went by. So I put him in the buggy and tried to park him away from everyone and everything while I picked out my shampoo. I had my back to him when I heard a woman saying,oh oh oh,so I turned to see what she was doing and seen that Brady had her by the hair of the head,both hands full of hair,pulling her face down to his. So we prized his hands off and I apologized while Brady laughed hysterically. She wasnt very upset,she said it was ok. Hopefully she wasnt tender headed,lol.
We left there and went to see my grandmother. Brady was walking all over the place,yanking dishes out of the sink and trying to clean off her counter. We finally got him out of the kitchen and he decided it would be cool to break a glass vase sitting on her end table in the living room,way to go Brady! He spilled smell good stuff all over the place. I cleaned up the vase and the mess,and decided I had to get hurricane Brady home.
He has been doing good though. He is learning left and right now. I think were going to start working with pecs soon,since hes learning to bring my empty bags of chips to let me know hes hungry,and empty containers of pediasure if he cant get to a full one,to let me know he wants a cup. The only problem now is figuring out how to make the cards accessible to him,without him eating them,lol.
Anyway Brady is still cranky,we think it might be from the meds. But we think some of it is that he is just plain out bored. We have to find something more constructive for him to do with his time. He will be starting school next Friday,unless there are any other snags between now and then. Keep your fingers crossed. |
posted by angelwings
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10:28 PM
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Tuesday, October 02, 2007 |
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| Brady is doing well,he is only having about 4 drops,that we see,a day. He is pretty cranky from the med increase,and isnt walking as much as before.Hopefully he will purk up soon. He did something so cute tonight,I have to brag!! I was taking video of him walking and he thought it was so cool,he was showing out. So after he walked to the tv and back like I told him to,he grabbed the camera and turned it around,so that he could watch the video that I had just taken of him walking. He did this twice,he would walk,so that I could get footage then come back to watch it,it was so cute! |
posted by angelwings
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12:28 AM
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