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Friday, August 29, 2008 |
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Its official, Brady is off the Topamax! We just gave his last one,so he is now only on 2 seizure meds,and we are thrilled! It has been years since Brady has been only two meds, we were never sure this day would come. The VNS is working great,it has been a Godsend to say the least. Brady and Peyton are spending the night with Maw Maw tonight :) I never dreamed that the day would come,that we could let Brady stay with someone else,and feel comfortable that he would be ok.
As for everything else,its good. Peyton seems to be feeling a lot better,and the fever seems to be down for now. His throat still looks a mess,with white puss pockets on both tonsils. We had a mono test done yesterday,so we should know if that's what it is by Tuesday. Hopefully he will get to go back to school if the fever continues to stay down.
Brady is doing great,loving school! His teachers are the best! I don't think that we could ask for a better group of ladies to be working with Brady. I told them Wed that it is nice to be able to leave Brady in their care,and know that hes very well taken care of. They said that when they were working with him, he done 3 matches without even being prompted, so were very excited! He got to go to the playground where all the kids had to give him hugs, sooooo sweet!!! I know that many people want understand my excitement over this,but Angelman parents will understand how we got excited over him having to visit the nurses office at school. He managed to yank away from his teachers hands when they were walking,and he got an uh oh on his knee. My baby boy had to visit the nurses office at school,hes such a big boy :) He is fine, but I think it nearly broke his teachers hearts,lol. It's going to be such a great year, were totally excited!! I would never have thought that I would be this excited about him started school!
Well that's about it for me, gonna take advantage of my mommy night and head to bed! Sending out lots of hugs and prayers to all our Angel families tonight! |
posted by angelwings
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10:54 PM
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Wednesday, August 27, 2008 |
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Well its been yet,another wild night here at our house! Peyton's temp shot up to 105 and we couldn't seem to get it down, no matter what we done. I finally put him back in a bath to cool him down,meanwhile Brady decided to have a big party while I was getting Peyton situated. We finally managed to get Peyton's temp down,but had to do a huge clean up afterward. We ended up having wipe down the entire room,steam clean the couch,mop and give Brady another bath! As if that wasn't bad enough,he ended up doing the same thing again within an hours time. This time he was sitting in the high chair,so at least he didn't manage to make quite the mess.
Anyways things have settled down,for the night I hope. I will keep you guys posted. |
posted by angelwings
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12:29 AM
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Tuesday, August 26, 2008 |
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Well, Brady has had a good day. He slept last night,so that was good. His brother woke up again with a high temp,so we were getting ready to go to the doc, when Brady decided he should throw the toilet paper in the tub and turn the water on. Then as if that wasn't enough he decided it would be even more fun to empty the garbage into the toilet :) So we got Maw Maw to go with us to the doc,so she could look after Brady while I took care of Peyton. Brady of course had a blast and did give hugs,but wouldn't get far from Maw Maw's side. We did find out that Peyton has Strep Throat :( Hopefully since Brady is already on an antibiotic, he wont catch it. But Peyton will be out of school most likely for the rest of the week,which really stinks. Hopefully when I take Brady to school tomorrow, I can get Peyton's work to bring home to him.
Well that's about it for me,wish us luck! |
posted by angelwings
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3:50 PM
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Well its been a wild day here. We woke up at 4am to get ready to leave for Brady's surgery,the weather radio was going on. We were under a severe thunderstorm warning and tornado warning. We knew that we had to make this appt, Brady's ears had to be taken care of. So we got ready and headed out,leaving Peyton with Maw Maw to get him to school. About 10 minutes after we left she called us to tell us school had been canceled. We were heading in the direction of the tornado,but thank goodness we never seen anything. We made it to the clinic safely and he was in and out in about 5 minutes. The left ear was the one that started bleeding first, it looked a lot better,but the right ear looked the same as the left had,a few weeks ago. The doc said that it was best to get the tubes out,or risk continuing to have problems with them. He couldn't explain why this happened in both ears at the same time. He knows Brady well,so he said Brady continues to be a mystery and that if we ever figure him out,to let him know,lol. Brady was super sweet,he smiled before and after surgery. We dragged him back out to the car in the rain and headed home to get Peyton. The weather has been yucky all day, warnings left and right,but so far no damage that I know of. Well as I was putting Peyton to bed tonight, I realised he has yet,another fever! I don't know why he has to start getting sick every time he starts back to school,but he does. He missed a day last week with a fever,and will be out again tomorrow. I'm going to take him to the doc in the morning and have a long talk with him about the continuous sickness during school. I just don't know what to do about all this. He missed somewhere around 20 days last year,because of sickness. We aren't supposed to send him to school with a fever,but if he misses to many days,we start getting letters saying that we might have to go to court :0 Something has got to give with all this!
Anyways everything else is going well. Brady already seems to be getting his balance back and has been in a great mood. Of course hes been into everything and stripping,as usual.
I will keep you guys posted on how tomorrow goes. hope to be heading to bed soon. night all. |
posted by angelwings
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12:10 AM
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Saturday, August 23, 2008 |
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Oh it has been a day here!!! Brady stayed up until sometime after 3am Friday morning. I tried to lay down with him,but leg cramps kept me from sleeping. By 5am I noticed Brady crying out and picking at his right ear,not the one that has been bleeding for a month now. I turned the light on to find blood coming out of this ear now! Then I noticed a foul odor coming from the left ear,the one that had been bleeding before,so apparently is has gotten infected. He now has two bad ears,and is in total misery at this point. He has fussed all night long, no matter what we have done for him, we cant seem to make him comfortable. Anyway I called the doc first thing this morning and he told me that we need to have Brady at the surgery center at 6:15 AM, Monday morning. They are going to remove his tubes,as this seems to be what is causing the problems. Im not sure why both ears decided to flair up all at once,but it has us very concerned. Since he has the VNS, infections are a very big deal,as it can get in the VNS leads and cause serious problems,not to mention the possibility of having to have the VNS removed. So the doc called in an antibiotic which we started today. If things get worse tomorrow our ped is going to meet us at te hospital for a shot. Otherwise we wait til Monday for the surgery. He does have a fever right now.
I have been on the phone with the surgery center,the docs office, and people calling to check on Brady, all day. Then I had to go get his med. Well then I get a phone call that my mom has been admitted to the hospital with chest pains, so I went tonight to spend some time with her at the hospital. I hope and pray that she will be ok, I just feel so bad that shes up there at the hospital all by herself tonight:(
Also, Peyton is broke out from head to toe, with something that seems to be a measle type rash,but hes feeling better,so I think hes past the worst at least.
My poor little Brady is stumbling around like a drunk person and is so unhappy,I hate seeing him like this. This is the first time since the VNS,that I really am worried we will see seizures. I pray that we dont see any,and that we can get the ears back to normal and that is walking improves after this.
Anyways I know that things are going to be just fine, tomorrow is another day I suppose. This is just a bump in the road. I refuse to get discouraged, things have been going to well here for that. Im just so thankful for all the good things in our lives. Sorry if this post is all over the place, I have had 2hrs or less of sleep today,and Im totally exhausted. Im going to lay down on the couch with my sweet boy now.
I will keep ya posted on how things go. |
posted by angelwings
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1:34 AM
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Friday, August 22, 2008 |
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Well, I think God is testing my patience today! Brady has been on it! We have had multiple parties today,and no parties are not a good thing in our house. I wont go into detail,but those of you have Angels or know Brady,know exactly what I'm talking about. He hates when I am not giving him full attention,which has been the case today. I have been trying to get some cleaning done,so he decided to punish me for it. I have been cleaning chairs and doing laundry all afternoon and tonight! Its 2am just had a party, took baths and cleaned up an entire bag of crumpled up chips int he floor. Brady is going strong, Im praying his happy pill kicks in very soon, I have so much to do today. But at least Brady is happy,so that does help I guess. Anyways,not much else happening here. Not sure if I posted about his school day or not. He had a great day Wed,totally loved it. Hes going to give his teachers a run for their money,but I think their up for it.
Well guess I better go,before we end up having another party. |
posted by angelwings
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2:03 AM
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Wednesday, August 20, 2008 |
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Just a quick update. Brady went back to the ENT today,his ear is looking better. The bleeding has stopped,but the granulous tissue is still there,so were not out of the woods yet. We will continue the drops and go back in one week to see how things are progressing. I will keep you guys posted on that.
As for the med weaning, its going great! We have him down from 6 topamax to 1 and he will be totally off in a week. He is progressing in leaps and bounds. He is jabbering up a storm these days,even saying some new words! His communication skills are wonderful these days. It is the sweetest sound ever,hearing words coming from that little mouth. So far,no seizures,which is amazing. It finally feels like were getting our lives back! He goes back to school tomorrow,which I know he is looking so forward to. His teacher and all the staff at school have been wonderful. Even though they have so many other kids there, they focus on Brady and his needs. It is going to be a great year, were really excited!
On a sad note,we have several Angels having seizures,in the hospital or having other medical issues at this time. We have an Angel sibling in the hospital with Leigh's Disease,which is progressive. So please keep these sweet babies and their families in your thoughts and prayers.
Anyways,gotta get some sleep for our big day tomorrow. Will post more later. |
posted by angelwings
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1:39 AM
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Sunday, August 17, 2008 |
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Hey guys! I'm sure many of you have heard about the new Ben Stiller movie called "Tropic Thunder". There has been a lot of controversy over this movie,and rightfully so. They use the word 'retard' throughout the film, 17 to 20 times. This is done without any regard for the dignity of people with intellectual disabilities,but yet they see no problem with the message that they are sending out to individuals, especially our younger generations. They are now selling t-shirts on the net, that say "Don't go Full Retard", a quote from this movie. I personally find this so very offensive and it scares me to death to think about the message that this is sending to our young people. I have a son that is nearly 10 yrs old,and he has been taught that this kind of behavior is unacceptable, but there are so many children that casually throw this word around, as if it is derogatory term. The word retard was never meant to define someone as stupid,but instead means, a slowing down or hindering of progress; a delay. It was simply a means to describe an individual with learning delays. Over the years this term has evolved into a derogatory term, used to insult or hurt others. I hear many young people,even my sons friends using this word to insult their friends, it is thrown around loosely. These children are not being taught any different, and I find that so very sad. We recently had some children here that were using this word to insult each other. These children know Brady and know that he has Angelman Syndrome,but they still love him very much. I sat down at the table with these kids and explained to them that retarded did not mean what they thought it did and explained to them that Brady was considered retarded. Their jaws dropped,they couldn't believe that I called him that,they even said that I was being mean. They honestly thought that this word was nothing more than a word used to insult others,they had no idea the true meaning behind it. By the time it was over, they had a better understanding of what this word meant. But I do find it sad that no one had ever taken 5 minutes to explain this word, since they use it all the time without thinking anything of it. It is our responsibility as adults to correct, not only children but other adults,that are using this word in a derogatory way. It is our responsibility to speak up for those who cannot speak for themselves. For those who think this word is funny, I wonder would they still see the humor if they,their spouse,child,grandchild,best friend,etc,were born disabled or got into an accident and ended up disabled. I do believe that everything is on a wheel,it all comes back around. It could happen to anyone at anytime,we just don't know what tomorrow holds.
As I was saying,the new Ben Stiller movie makes light of individuals with disabilities and something needs to be done. We need to make it known that this behavior is not acceptable and that we have more respect for ourselves and for individuals with disabilities,than to, in any way, help these people profit from this film. So please guys,stand with me,stand with Brady,and stand with everyone else in the world who has a disability,and BOYCOTT this film. If you pay money to see this film,they are winning. Please think of the message that the success of this movie will send out to our children,this is not a message that I want my 10yr old to get. Don't let curiosity get the best of you, this is not a film that we need to be supporting. We are living in a time when disability at an all time high and still rising, so we need to be teaching each other how to be more accepting and tolerable of people with disabilities.
Anyways now that I'm done preaching, I'm heading to bed. Thanks so much for all your support guys!! |
posted by angelwings
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2:22 AM
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Friday, August 15, 2008 |
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Hey guys, have you heard that new song, "Time of My Life",written by Regie Hamm,sung by David Cook? It was the winner on American Idol. Well most you probably don't know this,but Regie Hamm is one of our own. He has a very special daughter that has Angelman Syndrome. He recently shared the journey that he and his family have been through,to get to the point that they are at in their lives now. It was so very touching,that I asked his permission to share it with all of you. He was kind enough to allow me to do so,here on Bradys blog. So I'm going to paste his blog post below. Get your tissues ready :) Thanks so much for letting us share this Regie and for sharing your life with the world,you and your family are an inspiration to us all. http://www.myspace.com/regiehamm You can copy and paste his myspace addy into your browser. Be sure and check out his music!
"FULL CIRCLE
Category: Dreams and the Supernatural
It was late March of 2003 and my wife and I were sitting in a tourist bus with three other families on a crowded street in Beijing, China. We had all just climbed the Great Wall together and had stopped to buy hats and t-shirts from street vendors on our return back into the city. Yolanda (my wife) and I saw these cheesy little hats that said "Beijing Olympics 2008". We bought them and immediately added them to our fashion ensemble, along with our cargo pants, t-shirts and running shoes. The hats, and the inscriptions on them, seemed insignificant at the time. They did prove to be good conversation pieces, however. Yolanda and I discussed the '08 Olympics with the other families like us, awaiting eight-month-old daughters, on the bus ride back to the hotel.
This was exactly one week before we met our precious Isabella, Xin Meng (which means "new dreams" in Chinese). We were all doing the simple math that would tell us how old our daughters would be in 2008. We all agreed that it would be such a wonderful experience to bring them back for the games and introduce the little girls to the land of their birth. We speculated on whether they would be old enough to understand. We wondered about the in-between years and how we would all be different. Would we have other children? Would our daughters even care about China? Would we all be able to meet again and reminisce about our experiences together? It was indeed an interesting ride back to the hotel and I distinctly remember Yolanda and I deciding then and there that we would make it a point to be at the games in Beijing in '08 with Isabella.
At the time, it wasn't a stretch to believe we would be able to do it. In fact, it wasn't even something we gave a second thought to. If we wanted to go to China we just did it. If we wanted to go anywhere, back then, we just did it. Four days prior to climbing the Great Wall and purchasing tourists hats, I had stood in a record store on Santa Monica boulevard and picked my debut release "American Dreams" out of it's own sleeve in "H" section. My single "Babies" was number 15 on the Adult Contemporary pop chart (with a bullet, as they say) and I was told at my record release party two days prior to that, that I would be touring extensively upon my return from China - "line up a nanny", are the exact words my agent used, "you're going to be gone a lot". I was ready for it. I felt as though I could do no wrong and was living the part I was born to play.
I had gone from a meteoric songwriting career in Christian music, logging twenty one number 1 hits in seven years, Grammy and Dove nominations and walls full of platinum, to landing a record deal with Universal South records as a solo pop artist. My wife had been a very successful promoter in the radio world as well. She was responsible for helping launch some of the biggest names in country music. We were a jet setting, highly paid, well groomed couple who understood success and how to achieve it. We had, however, begun to feel empty in our lives and after learning that we couldn't produce children of our own, decided to go to China and bring home a little girl. That decision would change everything.
One week after the purchase of our "Beijing Olympics 2008" hats, a little girl with a high fever and and a rare genetic disorder was placed in our arms in a hotel in Nan Chung, China. She was the most beautiful thing I'd ever set my eyes on to that point in my life, and she instantly turned me into a different man. The very second she was in my arms, I couldn't bring myself to think about chart positions or tours or CD sales or anything remotely associated with my silly music career. When her sweaty, feverish, quivering little body was next to mine I was from that moment on ...Isabella's daddy. Everything else was a footnote.
The weeks in China, after adopting Isabella, were harrowing, sleep deprived, shocking, eye opening and life altering. Isabella was hospitalized twice in three days. She wouldn't sleep more than an hour at a time. She couldn't hold her head up. Wouldn't eat and didn't smile until the seventh day when I playfully tossed her in the air and she giggled. From that moment on, making her smile became my life's quest.
After two weeks in China, a fourteen-hour flight to LA, a four hour flight to Nashville, and a twenty minute car ride to our Franklin home, we thought we might be out of the woods with Isabella's illnesses. Not so. The next weeks, months and years sent us into turmoil, confusion, heartbreak and financial ruin. Isabella was different and no one could tell us why. We sold our house on five stunning acres and moved into a ranch house that would accommodate a little girl who "might never walk". I stopped touring and lost my record deal by September of 2003. In the haze of it all we were also informed that Isabella would not be covered under our private insurance plan due to her "pre-existing condition" that was, until July of 2007, undiagnosed. So my wife, who had been a highly paid executive with an expense account, took a job at a call center for a company that would provide group insurance coverage for the family. I became a housedad.
With no one interested in signing me to a record label or booking me for shows or using me to produce other artists, I limped along in the songwriting world anonymously for the next several years. I would get up at 5 or 6 in the morning, make Isabella's breakfast, clean her up, then sit her in a high chair next to the piano and write songs while she smiled at me. It was wonderful and terrible at the same time. Isabella was severely delayed with sleep disorders, seizures and no speech. She required full time attention and had to be monitored almost 24 hours a day. Yolanda and I became shift work care givers. Many nights after she would come home from work, we would kiss and I would head out to a club to play for the rest of the night for tips or door money ...or nothing. The years passed and we continued to struggle with Isabella. My career continued to slide into oblivion and my wife became more and more acutely exhausted. In late 2006, we adopted a second child. A glorious baby boy named Gabriel. For all the problems Isabella was born with, Gabe was born perfect and whole and was a Godsend. Our family was complete and we could begin to see the clouds over us lift. The joy of another life in our home awakened us from a five year stupor and made me begin to re-evaluate everything that had happened to us to that point. What constitutes a happy life? What is real success? In short ...what's truly important?
In March of '08, with no publishing deal, no record deal and no career left to speak of, my wife suggested that I try and write a finale song for the American Idol song contest. My friend Scott Krippayne had won it the year before and Yolanda told me "Scott did it last year, why couldn't you do it this year? Please try it - you have nothing to lose". I reluctantly agreed, then immediately thought of the line "taste every moment and live it out loud". That was a Thursday. I went into my office the following Monday and worked through what a "moment" song would sound and feel like. I couldn't bring myself to write about conquest and achievement. None of that rang true for me anymore. I had been living a cautionary tale of hanging your hopes and dreams on material success for the past five years. All I could think of was the need to give in to love, let bitterness burn and embrace the moments we have and people we love. I thought about my shattered career and the words "holding on to things that vanished into the air left me in pieces" washed over me and I briefly felt the sting of it all again. Then I thought about my wife and my daughter and my son and how they were truly all I needed. The words "all that I needed was there all along, within my reach, as close as the beat of my heart" came rolling off my tongue and I knew that it was the truth. I finished the song in five hours. Recorded and mixed it over the next three days and turned it in to the contest website (along with my ten dollar entry fee) the day of the deadline. Three days later, I was notified that my song "may" be in the top twenty. Two days later ...it was. Several weeks later, I was notified that I'd actually won the contest. A week after that, David Cook became the 2008 American Idol winner and performed my song in front of 30 million people. Two and a half months later, it had been downloaded over seven hundred thousand times, was number 3 on the pop AC chart, number 7 on the hot AC chart and had been performed live on TV a dozen times and been used in several TV production pieces. You almost can't ask for more out of a song than that. But then ...
On the eighth day of the eighth month of the eighth year of the new millennium, the opening ceremony of the 2008 Olympic games took place in Beijing, China. I was working in my office and about to finish up and go to bed, when my wife burst through the door in her pajamas. "Get up here - you gotta see this!", she said frantically. I ran upstairs just in time to see the ceremony close to the very words I had written in my office three months earlier. As David Cook sang line after line, my wife and I stood spellbound, watching little Chinese girls walk up and down the same streets we had so casually strolled five years earlier. They looked like our beautiful daughter sleeping in the next room. My wife, needing to be asleep so she could be at her job at five thirty the next morning, was in tears and visibly shaken by the inexplicable nature of it all. All I could do was stare and try to get a handle on the moment. I couldn't then and still can't. We weren't in Beijing with the other three families. Our daughter doesn't know she's chinese and can't tell us how she feels about her birthplace. Barring a medical miracle, she never will. As a family, we were tied to our special circumstances and a trip to China would be completely out of the question for several reasons. But our story - our journey - our personal revelation was there and speaking to the entire world. The weight of it still gives me chills.
I brought a Chinese baby home who's severe special needs condition sent my career and our life as a family into a tailspin. The years of learning and crying and hurting and losing had brought us to the point of letting go of everything. That point had spawned a song that went into the world and did what we could not ...attend the 2008 Olympic games in China. Moments like that can only be engineered by something higher than ourselves. If my life had continued on it's "perfect" course, I'm quite certain I would've never experienced 8/8/08 in that profound of a way. Any plan I could've developed would never have been as beautiful and unexpected. This one was divine.
Sometimes you have to lose everything to gain perspective. You can't see the circle while you're making it. Only at certain, special moments can you pull back and see the reasons for it all. China. Babies. Songs. Music. Dreams. Success. Happiness. They all mean different things to me now. They are all part of a grand mosaic that is in a constant state of immaculate design.
R |
posted by angelwings
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4:55 PM
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Thursday, August 14, 2008 |
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Okay guys,its nearly 3am here,and I'm dead tired,so I'm gonna try to give you the shorter version of our day. We started off right this morning with Brady emptying the bathroom garbage into my bath water,thanks little man! He made his way to the den,where he poured out a bag of chips,a bag of crackers and my entire soda. All the while Im trying to get both of us ready to go to his first day of big boy school! I finally did manage to get us ready and get there. He was in a great mood,and was really chatty today. He showed them just how smart he was. He worked toys that hes never worked before,he picked up a toy phone and it wouldn't work,so he just turned the on switch on,lol. The PT came in and evaluated him,but he had other plans for her. She tried to see if he could step over a bar she placed on the floor,to get to a ball on the other side. After studying the bar for a few seconds,he decided it might be easier to just go around it and get the ball,lol. He turned the lights on and off in every room,learned how to operate the automatic soap dispenser,learned how to use the water fountains, stole half of a little girls napkin in the nurses office,and even remembered where Bubba's classroom was and had to drop by for a visit. It was a full day,he was busy,but it was good. Finally,a kid that loves school!! I think hes going to do great,but I do pitty his teachers,lol.
Anyway when we came home,he brought me a Vaseline,lubed up,can of pediasure for his cup,lol. He had gotten the Vaseline and had it all over the floor,tv,his nose,hands,clothes,think he might have even eaten some, and had rubbed down the pediasure.Well tonight I decided to put him in the high chair while I took a bath,you would think that would be safe. He learned how to skoot his chair all over the place,and made it to my underwear drawer,where he thought it would be cool to wear them on his head,then made his way back to the garbage,it looked like a hungry dog had been in the trash,all over the bathroom,but hey,it wasn't in the tub this time :) And the last event for the night,was to pour out,yet another bag of chips!!!!!!!! Yep,its been a busy day here, I would be so bored without my little monkey,lol.
But all is well here,he is sleeping and I should be to! I have been working so hard to get some pictures on his blog,finally got it done, I hope!
Oh yeah,as for his ear,its still bleeding on and off. We will keep the drops in it,and see what happens on Tuesday.
guess I better get some sleep,he will be up soon. I will post more later. |
posted by angelwings
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2:23 AM
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Tuesday, August 12, 2008 |
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Umbrellas are useless with an Angel!!!! Yeah,its been raining cats and dogs here all day. We had to go to the doctors office to pick up Brady's shot exemption so that he can start school tomorrow. I did manage to get him inside with only playing in a couple of water puddles along the way. He had a blast there,as usual. They staff was playing with him and he of course had his usual pig snort contest with them. He just loves them and the doc so much! He spied a kiddo with a paci just like his and he of course wanted to steal the poor babies paci. But we got our blue slip,said our goodbyes and headed back to the car. I did use the umbrella to get there,but as I was unlocking the door he escaped and headed back to some water puddles on the side walk. I ended up throwing the stupid umbrella down and going to retrieve him from the flooded side walk,all the while,getting soaking wet. The entire staff was gathered around the window watching all the excitement,totally cracking up,lol. I dragged him back to the car,we looked like a bunch of wet poodles by the time we managed to get all the way back in. We then went to the grocery store,where again,he had to stop and play in every water puddle along the way. I hate getting out in the rain,but man oh man,does Brady ever love it! Anyways we got our shopping done,with my frizzy hair and soaked clothes,but we got it done and made it home safely.
As for Brady's ear,its still bleeding and we just cant get the drops to go in,but we will keep trying until his appt on Tuesday.
He starts his first ever day of school tomorrow, I'm excited,but I'm not sure he knows whats coming. I think he will love it though. His teacher even went and got contacts,just for Brady! He showed her last time we were there,just how much he loves glasses,so she decided not to take any more chances with them,lol. I will take lots of first day school pictures tomorrow,so be sure and check back. I will also update you guys on how it goes. I'm not worried about Brady,but we should all be saying lots of prayers for his teacher :)
Well gotta get supper to cooking,will post more later. |
posted by angelwings
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4:04 PM
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Monday, August 11, 2008 |
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Just remembered that I hadn't posted an update on our doctor visit this morning,sorry guys. We left out at 7am this morning,heading to the doc. Brady stayed up all night,he went to sleep sometime after 5:30am and was back up by 6:30am. Of course he was doing better than me this morning :0 Brady's ear hasn't bled much since Thursday,until this morning. He woke up with his ear and my bed covered in blood,guess it was a good time to start back bleeding,if it was going to bleed.
Anyways we met the doc in his office to try and get a look at the ear,without sedation. If we weren't able to get a good look,then we were going to take him over the surgery center for sedation. But thank goodness we were able to hold him down. I had his legs rapped in mine,and was holding his arms by his side,while his dad held his shoulders and head,and the doc cleaned the dried blood out of his ear. He did get a good look and discovered something similar to a blister around the tube in his ear drum. It had been rubbing long enough that it started to bleed and that's where the blood is coming from. There has been to much dried blood to get the drops down in the ear,so the doctor put a wick in his ear,to help hold it open enough to get the drops in. We are scheduled to go back on Tuesday,so we will know more by then. Anyway I will keep ya posted,going to rest now,and put my little strippers clothes back on,uhhhhhhhhhhh........ |
posted by angelwings
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9:36 PM
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Well tomorrow is the big day. We take Brady at 8am in the morning to have him sedated and get a look in his ear,to see where the bleeding is coming from. It hasn't been bleeding much the past few days,but were going forward anyway. If we don't,I'm sure it will start up again,so better safe than sorry.
Brady is doing great. He has been a monkey today :) He brought me his cup earlier tonight,and even went and got a can of pediasure to go in,without even being told to do so. He also did something that was to funny tonight. He was watching tv when a Huggies commercial came on. He stopped and was watching the kids dancing around in their huggies diapers,when he looked down and grabbed his diaper,as to see if he was also wearing huggies,lol.
Well guess I better go entertain him. He cant have anything else to eat or drink tonight and hes running around with a can of pediasure,its going to be a long night. I will post more after we get back tomorrow. |
posted by angelwings
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1:04 AM
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Friday, August 08, 2008 |
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Well Brady's ear has been bleeding on and off since our ER visit a week ago. This afternoon it started bleeding a lot so I took him to the Ped. I noticed in the office that it had a strange smell,which really worried me. Anyways the doc isn't sure what is going on with it. We suspect that he either still has something stuck in it,or that he could have possibly done damage when he stuck something in it,and it could be getting infected. He was outside when it happened,so we have even wondered if a bug flew in his ear. If it doesn't get worse and he doesn't develop a fever before Monday,we will then go and let them sedate him,so that they can go into the ear and find the problem,and clean it out. If it does get worse before then,then we will go to the hospital and go ahead with the sedation.
On a good note,he had a blast at the doctors office,lol. It was an adventure,as it always is when he goes out in public. He made lots of new friends and had a ball with the staff. He had them snorting and cracking up,with him.
As for the rest of the week,we have been for an Augmentative Eval,to determine whether or not Brady got a communication device. Lets just say that he wont be getting one from them. He totally bombed the eval. He wouldn't do anything they wanted him to,he was very distracted by all the other people in the room. They wanted him to play a game, Simon Says,which hes never heard of,and they wanted him to use pictures and devices hes never seen. If he had been in the mood, I think he probably could have done it,but he wasn't the least bit interested. He was more interested in taking the devices apart and playing with everyone there. Oh well, life goes on. We know how smart he is,and know that if he doesn't want to do something,he wont. Hopefully we can get him on the right track when he starts school. Of course he wont be starting Monday with everyone else,as he will be under sedation at 8am that morning :( Were going to miss big brothers first day,we wont even get to see him off. Yeppers,never a dull moment here.
Were getting ready for our Angelman Awareness Booth on August 23rd. I must say that I have been slacking lately,so we have to get some ideas together as to what we want to do.
Anyways gotta hit they hay,we have 4th grade orientation tomorrow,then were taking the boys out of town to play. We were heading out to go camping tomorrow,but our camping partners had a bad car accident today,thank goodness they are ok,just a bit sore. Then of course we cant take Brady in the water with his ear as it is,so were just gonna go play for the day,not sure where we will end up. I will take lots of pictures for you guys to see :)
Will post more later. |
posted by angelwings
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1:20 AM
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Sunday, August 03, 2008 |
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One wasnt enough :)
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posted by angelwings
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7:56 PM
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Well,we got a break last night. Both boys spent the night with Maw Maw. Brady done really well,he slept all night :)
His ear starting bleeding again today,not sure what is going on,but he has been messing with it,like it is bothering him. He also started spitting up everytime he ate this afternoon. Our ped is out of town and the ER showed that they aren't going to do anything,so we have to wait til Monday to see the ENT. I afraid that he either has something still in his ear,or that it might be getting infected. Hopefully we can find out whats going on when we see the doc on Monday.
All in all, Brady has had a good day,considering how early he got up this morning. He has been in a good mood,but back to his stripping games of course.
Anyways I will keep ya posted. Heading to bed to get some sleep. |
posted by angelwings
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1:53 AM
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Friday, August 01, 2008 |
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Just wanted to post a quick update and let everyone know that Brady is doing fine. He hasn't shown any signs of discomfort with his ear,and we still haven't found the mystery object that he tried to scratch with :) It looked a site today,but we got it cleaned finally, it looks good. He has had a busy,but good day today,hes been in a super sweet mood.
Anyway, I will post more later. |
posted by angelwings
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1:59 AM
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