|
 |
|
Wednesday, April 30, 2008 |
|
Not much news to post today,so far,but I just felt the need to post anyway. This is more a mommy post,rather than a Brady post. Brady just woke up this morning and is being so sweet. I heard him coming down the hallway looking for me. He was eh,eh,ehing the whole way to the room where I am. I swear listening to his sweet voice is like listening to the Angels sing,I cant begin to explain how refreshing it is to hear him jabbering. I got him changed,gave him a cup, and got lots of sweet,sweet sugar,but he let me know that wasn't all he wanted. He immediately grabbed me by the hand and walked me to the door. I said oh you want to go outside and he just shook his head yes. My heart is just bursting with joy,that he is actually communicating with me,I mean real communication! His every action just makes me smile from ear to ear,and even get teary eyed at times. There is no small accomplishment when it comes to him,we celebrate everything,even the things that might seem small to other people.
Its amazing how so many people in this world,just don't take the time out, to enjoy their little ones, enjoy their accomplishments, no matter how big or small. I just can't understand why so many people,get so caught up in the hustle of every day life,that they forget to to take time and enjoy their beautiful gifts from God. A child,whether special needs or not,is such a tremendous gift,and we have to enjoy them every moment, we just don't know when that might be taken away. Take to time to watch your little Angel sleep, dream those sweet dreams and maybe if your lucky,they will even share that sweet,innocent little giggle and smile, while they sleep. Put your face to their skin and enjoy that soft,sweet scent that only your child has. One day our kiddos will be all grown up and we wont have a chance to do these things,so take the time out to smell the roses people,life is just to short to do otherwise. I know I preach this all the time,but the housework,yardwork,shopping,etc,can wait. There is nothing more important that our kiddos. Take the time to talk to your children,whether you think they understand or not,they are human and they love to be the center of our attention,they love to know that we care. I really think that many problems with young people today,is that parents let video games,tv's and other things,raise their children. Children need to know that they are loved,and that they are number one in our lives. They need to know that they can depend on us,that were never to busy to listen if ever they need to talk. These kids truly are the future generation.
As for Brady,he continues to have a nasty ear infection,but is strangely unaffected by it,other than being a little off balance. Sometimes Im thankful that he has such a high pain tolerance. Were staying on the meds,and hopefully things will get better for him soon.
Anyways I am done preaching for today. I'm gonna go enjoy my sweet little guy,and you should do the same. I will post more later. |
posted by angelwings
@
11:32 AM
  |
|
|
|
|
|
Wow,thank you all so,so much for helping us reach our goal for our Angelman Fundraiser! We are super excited to have surpassed the original goal!!! But were going to push on,it would be great to raise even more money for the Foundation. We set our goal at a low $500 this year,because times are tough,and we do understand that. I have been blown away by peoples generosity and willingness to give. We have had many cash donations,as well as several door prizes being donated. I believe we have 16 door prizes at the moment. These door prizes really are amazing! I do wish that everyone would come and join us at the Walk-A-Thon this year,its going to be so much fun! If you are interested in attending the Mobile walk or any other in the US,or if you want help finding the closest walk to you,please don't hesitate to contact me. Just click the contact link on the right of this page. Remember,you do not have to have a loved one affected by Angelman Syndrome,to help support the cause and walk for a cure.
As for Brady,he is doing well. It just blows my mind at how strong he really is. His ear is just a total mess,but yet he is happy and shows no signs of being in pain. So far so good on his seizures. I was thinking just today that this is going to be a real test for his VNS,if he makes it through this infection with no seizures,we will know that its working (fingers crossed).
He is learning in leaps and bounds these days. He does something new every day. He is learning to follow simple commands,its so cool! I can tell him to bring me his cup,bring me pediasure,hand me that,etc,and he will actually do it!!! His comprehension really does improve daily.
Anyways that's it for now. I will post more later. |
posted by angelwings
@
12:16 AM
|
|
|
|
|
Monday, April 28, 2008 |
|
Our interview went well this morning,other than there just wasn't enough time. I think it would take at least an hour for me to talk about AS,lol. Anyway,Brady was good,a bit active as usual. Just before we went in, I realised that his ear was draining,uhhh... He hasn't complained at all and hasn't really been all that fussy til today. So after our interview we went to see the doc,he confirmed that Brady has a nasty ear infection,so hes on meds for that now. I feel so guilty for not noticing that something was going on sooner. If it had been anyone else,they would have been in agony. Brady just amazes me each and every day,at how strong he really is. I just wish that everyone would have got to see how happy he is. He was pretty blah this morning,not many smiles.
Oh,one last bit of news,Brady has learned to shoot a watergun!!! He totally loves it,he finally learned how to push the trigger and he was squirt everyone and everything,lol. Were going to have a blast in the pool this summer. We always buy super soakers for the kiddos,but up until now,Brady hasnt been able to join in the the fun. Im looking so forward to seeing him be able to play with everyone.
Anyway that's about it for now. I will post more later. |
posted by angelwings
@
8:31 PM
|
|
|
|
|
|
| Wish us luck on our tv appearance today!!!! |
posted by angelwings
@
6:46 AM
|
|
|
|
|
Sunday, April 27, 2008 |
|
So exciting!!!
|
I received this article today and wanted to share it with everyone. I sit here and read in tears,as I think that it is a real possibility that my little man may actually speak one day. It is so encouraging to see Angelman Research making so many huge advancements. Its articles like this that remind me just how important our walk a thons really are. Without the money raised for research,these things just wouldn't be possible. So thank you all so very much for your contributions,in helping to make our dreams a reality.
"A "Long Shot" Pays Off
Grandmother’s Alzheimer’s leads scientist to a major breakthrough in Angelman Syndrome
By Elizabeth McBreen/Photos by James Branaman
As a research scientist, Edwin Weeber, Ph.D., never thought he would be in a position to receive fan mail. Weeber, who is currently an Associate Professor at the University of Southern Florida (USF), has spent his graduate and post-graduate career conducting research on Angelman syndrome (AS). After 10 years of research and testing, he has discovered how to reverse the deficits of the disorder in mice.
Angelman syndrome, first discovered in 1965 by an English doctor, Harry Angelman, is a disorder that causes severe developmental delays, impedes speech and motor coordination. Other symptoms such as seizures and microcephaly affect about 80 percent of patients, according to the Angelman Syndrome Foundation Web site (www.angelman.org). Not evident at birth, AS is generally diagnosed after the age of 3 years. Relatively rare, AS affects between 1 in 15,000 and 1 in 30,000 people, and it is common for patients to exhibit some of the same earmarks as autism. These can include hand flapping and a short attention span. Although the two disorders can present similar symptoms, Weeber says that AS is considered more severe in nature.
Weeber started out as a graduate student studying microbiology at Baylor College of Medicine in Texas. Because his grandmother was suffering from Alzheimer’s at the time, he was drawn to research of the brain, specifically learning and cognitive ability. Weeber began working with David Sweatt, Ph.D., who was conducting cognitive studies in his lab. While working in Sweatt’s lab, Weeber became particularly interested in the hippocampus, a part of the brain that plays a role in memory. Down the hall from Sweatt’s lab, another researcher was studying AS in mice models. “Angelman syndrome is a maternal imprinted disorder and there are no expressions of it in some parts of the brain – one of these is the hippocampus. So instead of studying random things in the hippocampus, I decided to study Angelman syndrome,” says Weeber.
Prior to Weeber’s studies, most of the research that had been conducted on AS had been genetic. The gene that carries the disorder was identified in 1997. Abnormal function in this gene, UBE3A, had been targeted as a possible cause for the disorder. UBE3A is a gene that is imprinted on the brain, meaning that the body knows what part of the gene is maternal and what part is paternal. “We get half of all of our genes from our mother and half from our father. The deletion or mutation of the mother’s gene causes AS,” says Weeber. Interested in the biomedical aspects of the disorder, he began studying enzymes and proteins in the brain that work with this gene. Weeber would make his groundbreaking discovery while working in his own lab at Vanderbilt University.
As he worked with his mice models from Baylor, Weeber discovered that he could reverse the effects of AS by regulating a particular enzyme, CaMKII. CaMKII is “an enzyme that is essential for learning and memory, as well as normal motor learning. We found that one of the biological abnormalities in AS mice was reduced CaMKII activity. It was known that reduced CaMKII activity results in neurological deficits. Thus, we concluded that regulating CaMKII in the mice may reverse their neurological deficits,” says Weeber. When Weeber tested his theory by crossing mice with AS and mice with a mutation that caused them to retain their CaMKII activity, the resulting offspring had no AS symptoms. The seizure activity, mental retardation and problems with motor coordination all disappeared in the mice models. These results caused Weeber to conclude that the deletion or mutation of the maternal part of the UBE3A gene caused reduced CaMKII activity, resulting in AS.
Weeber says that when the activity of CaMKII enzyme is regulated, the deletion of the maternal part of the UBE3A gene is corrected. He adds that this enzyme is not produced until after the mice are born. This may also be the case in humans. Weeber says that this conclusion is an important when it comes to the treatment of AS. “This suggests that AS is not developmental in nature, but rather biochemcial. In other words, the brain appears to be wired correctly, but the change in CaMKII activity prevents the proper communication between the neurons in the areas of the brain where maternal UBE3A imprinting occurs.”
Six months ago, Weeber, his wife and their son moved to Florida. The couple has since welcomed a new daughter to the family, and Weeber has taken the position as Associate Professor at USF. Weeber and his wife, who has a Ph.D. in neuroscience, feel that a move to USF is a natural progression because the school is known for its work in cognitive studies. At USF, Weeber will pursue therapeutic approaches for AS patients. The results found in Weeber’s mice models were obtained through genetic engineering, and so this method is not applicable to humans. He says that one of the approaches for treating AS in humans could be a pharmacological one that would modulate CaMKII. Another possibility is adeno-associated virus (AAV). Weeber explains that this is a method for introducing foreign genes in neurons of the central nervous system. AAV can be used to either introduce CaMKII with the same mutation that was used to rescue the AS mice, or introduce a UBE3A gene that would take the place of the deleted or mutated maternal UBE3A gene. Weeber plans to begin researching the use of AAV to treat AS in the next six months.
While Weeber’s discovery has many positive implications for AS patients, it could also be good news for people with autism. He says that while AS patients and autistic people look very different, there are genetic similarities. “Future research may in fact find a relationship between changes in UBE3A and autism,” says Weeber. Other disorders having to do with cognitive function may also benefit from his research. For now, parents of AS children are celebrating Weeber’s work. Terry Jo Bichell is a Visiting Scholar at Vanderbilt Kennedy Center for Research on Human Development and the mother of a nine-year-old boy with AS. Bichell took a position at Vanderbilt not long after Weeber’s article was published. “I suddenly realized that concentrating on a cure for AS was not a pie-in-the sky day dream, but a real possibility,” says Bichell. “Now it feels like the answer lies just beyond a flimsy curtain. It is almost in sight.”
For more of this article please subscribe to Spectrum today." |
posted by angelwings
@
5:18 PM
|
|
|
|
|
|
Well,we had a great day today!! Brady has been doing so many new things,its so much fun to watch him develop all these new skills. The biggest thing he learned,is to jump on the trampoline,he totally loves it!!! He was mostly jumping on his knees,but he was having a blast. He did walk across the trampoline several times,which is huge!! If he can walk on that trampoline,he can walk anywhere!
Another thing he was doing in the car today,was picking things up out of the floor,with his feet and toes,lol. He was strapped in the seat and couldnt reach the floor with arms,so he was using his toes and feet to grab his toys up out of the floor,way to use those feet and toes,lol.
We had him outside in a little pool,as were still trying to get the big pool cleaned up from winter. Anyway he I told him that I was going to turn the water on and put some more water in his pool,so he picked up the hose and put it over in the pool!!
We went to Maw Maws house for dinner today. Some more of the family was over there,so the guys retired to the living room to sit around and chat after dinner. Brady decided it was time for him and Maw Maw to go in there too,so he grabbed her hand,and led her to her recliner/rocking chair,where someone was already sitting. He ran them out of her chair,so she could sit down and hold him,lol lol.
Another thing that he done was last night,he was picking up little peices of paper,putting in my hand,he was actually cleaning up!!!!!!
Anyway,things really are going well here. Brady continues to progress,and no seizures as of yet.
We have our big television/radio appearance on Monday. Were going to be talking about the walk a thon and discussing Angelman Syndrome. Im trying not to work myself into a bundle of nerves,I hope that it all goes well and that I can remember everything. But most of all,I hope Brady does good on camera,and doesnt try his Chip N Dale routine,lol. I will keep you guys posted on how it goes. Hope you guys enjoy the pictures of Peyton and Brady on the trampoline. They had been outside all day,so they were pretty dirty,lol.
Anyways,I will post more later. |
posted by angelwings
@
12:17 AM
|
|
|
|
|
Thursday, April 24, 2008 |
|
| Shewwww!! Its been a busy day today,but its been good. Brady was in a great mood today. We got up and going early this morning,collecting door prizes for the upcoming walk a thon. Brady loved going around to all the business' visiting with everyone. Every time we stopped,he was itching to get out of his seat and go in to meet the next person,lol. He really was very good in each place we went in. He of course ended up in a few peoples laps along the way,lol. He even got to try on a cool cap at one store,lol. It was a lot of work,taking him to each store with me,but it was so worth it. Im glad that people got to meet him,and understand what this walk is all about. We managed to make it through the entire day without him breaking or spilling anything,so thats saying a lot. He did try out his chip n dale routine in one shop,then he snorted a little bit for them,and decided that he needed to take a rest in the middle of thier floor. Needless to say all eyes were on him,and he was eating it up,lol. Everyone has been so generous in their donations,it has been an amazing experience. We live in a rather small town,and it seems that everyone here has been bombarded with fundraisers lately,but yet the majority still chose to donate to the Angelman walk. Our town might be small,but its full of so many wonderful people,I wouldnt live anywhere else. Anyway things are good here. Brady still continues to do great. He has been such a little monkey today,trying to make everyone laugh,soooooo sweet. He even passed out some hugs along the way,big surprise huh,lol. He did decide that he wanted to hang around a couple of stores,and nearly refused to go with me,lol. But we made it back home in one piece. Were getting ready for bed now,so I will post more later. |
posted by angelwings
@
10:34 PM
|
|
|
|
|
Tuesday, April 22, 2008 |
|
Sisters....
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, M RI films, and heart surgeries.
All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right. Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable. We have educate d ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and ?the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.
We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could recei v e education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have fou nd ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always. We ne ve r stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world
Author unknown
**********************************************************
)^( = An Angel for you |
posted by angelwings
@
9:44 PM
|
|
|
|
|
|
Why do I always have to be the one that starts to do laundry and there's
> no
> detergent? I guess it was time for me to do my "Dollar Store" run, which
> included
> light bulbs, paper towels, trash bags and Clorox. So off I go.
>
> I scurried around the store, gathered up my goodies, and headed for the
> checkout counter only to be blocked in the narrow aisle by a young man
> that
> appeared to be about sixteen-years- old.
>
> I wasn't in a hurry, so I patiently waited for the boy to realize that I
> was there.
>
> This was when he waved his hands excitedly in the air and declared in a
> loud voice, "Mommy, I'm over here."
>
> It was obvious now, he was mentally challenged, and also startled as
> he turned and saw me standing so close to him, waiting to squeeze by.
> His eyes widened and surprise exploded on his face as I said, "Hey Buddy,
> what's your name?"
>
> "My name is Eddie and I'm shopping with my mother," he responded proudly.
>
> "Wow," I said, "that's a cool name; I wish my name was Eddie, but my name
> is Hal."
>
> "Hal like Halloween?" he asked.
>
> "Yes," I answered. "How old are you Eddie?
>
> "How old am I now Mommy?" he asked his mother as she slowly came over from
> the next aisle.
>
> "You're fifteen-years- old Eddie. Now be a good boy and let the man pass
> by."
>
> I acknowledged her and continued to talk to Eddie for several more minutes
> about summer, bicycles and school. I watched his brown eyes dance with
> excitement because he was the center of someone's attention. He then
> abruptly turned and headed toward the toy section.
>
> Eddie's mom had a puzzled look on her face and thanked me for taking the
> time to talk with her son.
>
> She told me that most people wouldn't even look at him, much less talk to
> him.
>
> I told her that it was my pleasure and then I said something. I have no
> idea where it came from, other than by the prompting of the Holy Spirit.
>
> I told her that.... "There are plenty of red, yellow and pink roses in
> God's garden. However, "Blue Roses" are very rare and should be
> appreciated
> for their beauty and distinctiveness. You see, Eddie is a "Blue Rose" and
> if someone doesn't stop and smell that rose with their heart and touch
> that
> rose with their kindness, then they've missed a blessing from God.
>
> She was silent for a second, then with a tear in her eye she asked, "Who
> are you?"
>
> Without thinking I said, "Oh, I'm probably just a "daffodil or maybe even
> a
> dandelion," but I sure love living in God's garden.
>
> Pastor Hal Steenson
> This real life story took place July 12, 2006.
The Keeper of The Blue Rose |
posted by angelwings
@
9:43 PM
|
|
|
|
|
|
Hey guys!!! Were getting excited as the Angelman Walk a Thon draws near!!! I want to invite everyone to come and walk with us in Mobile Al, May 17th. As Brenda said,the more the merrier!! We are hoping for an amazing turnout this year,as this will be the first walk ever held in Mobile. I really wish that all of you would come and join in on the fun,its going to be a hoot,and the best part is that we will be surrounded by Angels!!!! Anyone and everyone is invited,even if you don't have a connection to Angelman Syndrome. We appreciate all the support that we can get,and we need your help to promote awareness about this syndrome,as well as help fund research in finding a cure.
We went out taking up donations here in town today,everyone was so very nice and we appreciate everyone taking the time out to help us reach our goal. And hey,we made it all the way,without Brady breaking one single item,whooo hooo!!
We have a low goal set on Brady's fundraising page this year,as we understand that times are tough. But were really hoping to surpass that and have to raise our goal up even higher. As you can see,we have now reached 85% of our goal,and we are excited!! We even have some business' here that are donating door prizes for our walk,how cool is that!!!
Anyway just wanted to invite everyone to come and walk with us,I promise it will be loads of fun. And we wanted to thank everyone that has helped make this event possible. If you cant make it to the Mobile Walk,then maybe you could make it to the Birmingham Walk. If you cant make it to either of these,go to www.angelma.org and check out all the other walk sites all over the US, the options are endless!! It is through your support,that we are able to do this every year,and that we are one step closer to finding a cure for this syndrome,so THANK YOU,and Brady sends lots of sloppy kisses your way. God bless each and every one of you!!!!!! |
posted by angelwings
@
3:07 PM
|
|
|
|
|
Sunday, April 20, 2008 |
|
Well,we had a good end of the week,and weekend. We went camping with some friends Thursday and Friday. The kids had a blast,but we wouldnt let Brady submerge himself in the lake water,because of his incision sites. The one on his neck,actually started to look infected,so we had to get some cream called in to the pharmacy where we were camping. It is looking much better now though. Brady rode the jet ski for the first time on Friday,he loved it. He was waving at everyone on the shore,trying to stick his hand down in the water,and smiling from ear to ear the entire time,it was so cute. I think he could have rode all day and not got tired. We had a good time though. Of course his Bubba had a bicycle wreck when we first got there,and got a dilly of a bruise and scrape on his tummy. He boycotted his bicycle after that,lol. Brady didnt sleep well in the camper for some reason. He got up both nights in the middle of the night and was ready to play,uhhhhhh. We ended up coming home early,the weather was kind of cool and we were tired from wrestling with Brady. Brady broke our friends in right,lol. We havent been on a trip with them since Brady was very young,so they were amazed at how active he has gotten,lol. Everyone else was busy one day,so me and Brady were hanging around outside the camper,right next to the water. I was cleaning up a bit when Brady decided that he needed to go for a swim. I took off after him,but flash made it to the water before I could reach him. He bent down and put his hands in the water and mud. I grabbed him up and carried him back up the hill,he was steadily looking at his hands,then suddenly stuck them up to his nose to get a good smell,lol. He must have thought it was poo,it really did look like it,lol lol. Anyway it totally cracked me up and he got a kick out of it too. We met some pretty cool people while we were there,and got a chance to spread the word about AS,so that was great. We met a precious little 6yr old girl,that was very interested in Brady. She asked why he moved his arms like that,then about his scar on his neck. I told her he had Angelman Syndrome,which made him a very special little boy and that the docs had done surgery on him,to make him feel better,thats why he had a scar. She was so cute,she said just as serious,"can he turn his head",lol lol. I said yes baby he can,he can do anything we can do,other than being able to talk. But I explained that he does understand it when we talk to him,and that he loves to play with other children. Its amazing how accepting other children are,their so innocent.
Anyway we had another mom stop to talk to us,she has a son with CP,so she was very understanding about Brady.
Well thats about it for me,its been a long day,so Im going to beg Brady to go to sleep. I will post more later. |
posted by angelwings
@
10:57 PM
|
|
|
|
|
Saturday, April 19, 2008 |
|
I first, want to say thank you all so very much for your prayers, for little Ashely and her family,I know that they appreciate all the prayer they can get. But it saddens me to say,that sweet little Ashely passed away. Her family removed her from life support Thursday. I just cannot even begin to imagine what this family his going through,so please continue to pray for them. My understanding is that her dad and little brother are taking it very hard. Her mom is so very strong,but still needs your prayers as well.
You can visit Ashley's Memoral Page to post a note to her family. You can also vist her Firstgiving Page to donate to the Angelman Syndrome Foundation in honor of her memory.
I will post more later. |
posted by angelwings
@
10:21 PM
|
|
|
|
|
Wednesday, April 16, 2008 |
|
Just wanted to post a quick update. Brady is doing great!! He is still a busy boy,but seems to be really calming down a bit lately. So far,we still haven't seen any seizures and he is doing really well from his surgery.He has been so sweet today,giving out love every time I turned around. I cant even begin to describe how lucky I feel to have him in our lives,and for him to be happy and healthy. I am so thankful for my sweet little man. My heart is heavy with grief for Ashley's family and Dr. Wagstaff's family. I cannot begin to imagine how they are dealing with their tragic situations. I look at my sweet little guy and realise that what happened to Ashley,could have so easily happen to him. So guys please hold your loved ones close,and treasure every moment with them. None of us know what is going to happen,tomorrow is no guarantee. Put that house work off,put the yard work off,and all those other things that you think just have to be done. Take that time and spend it with those closest to you,the rest can wait.
I'm not sure if I updated everyone on Ashley or not,but we have learned that she didn't have an allergic reaction to peanut butter,but actually got choked on a peanut butter sandwich. Please continue to keep this family and Dr. Wagstaff's family in your thoughts and prayers. I will post more updates as they come. God bless each and every one of you tonight. |
posted by angelwings
@
11:53 PM
|
|
|
|
|
Tuesday, April 15, 2008 |
|
I got up this morning to read a heartwrenching email about one of our sweet little Angels in Alabama. The email reads as follows:
"Angelman Families,
Ashley Williams, daughter of Alicia Black-Williams (Birmingham site coordinator), is in intensive care at UAB on life-support. On Sunday Ashley had a severe allergic reaction to peanut butter. She both respiratory and cardiac arrested. Since that time Ashley has been on life-support. We have been in contact with Alicia and it was just confirmed that Ashley’s tests results showed no brain activity. They will be repeating these tests again this afternoon. Please keep Ashley and the family in your prayers at this very difficult time. I will post again to update everyone, but please do not try to contact the Williams family at this time. Thank you."
Please be praying for sweet Ashley and her family. I cannot even begin to imagine what they are all going through at the moment. I will keep you guys posted. |
posted by angelwings
@
12:20 PM
|
|
|
|
|
Sunday, April 13, 2008 |
|
Not much happening here,but I wanted to post a quick update. Brady continues to do well,no seizures. He slept all night last night,even went to sleep pretty early. He got up early yesterday,so by night,he was totally manic. He was in a good mood,but determined to tear everything apart. He is doing great this morning,just being a busy little boy. He has been using his little go talks,all I hear is,"I want my cup","I'm hungry,feed me", and "I want my maw maw",yeah his brother programmed them,lol. We have got to get him something better for him to use to communicate. Were throwing around the idea of a touch screen device,so that he wont be able to take off the overlays and destroy the pictures. Hopefully we will hear back from his ST with the Augmentative Team,this week. I'm looking forward to Brady finding his own voice and way to communicate,he is showing such a desire to tell us what he wants,its very exciting. He has come so far,from that little boy that could hardly push the buttons on the talkers. We had to make sure they weren't indented to far,weren't to small,etc. But now this kid can push any kind of buttons,even those he isn't supposed to,lol. He loves pushing buttons on the elevators at the doc. He pushes the Up button,then we show him which floor and pushes that one,hes such a big boy. Anyway he has truly come so far,and is learning so much,so quickly. My baby boy is growing up. He will be turning 6yrs old,May 21. It just doesn't seen like its been 6yrs already. His brother is going into double digits this year,he will be turning 10yrs old,uhhhhhh.
I have to give a shout out to big bubba as well. He made top 100 readers in his school,so hes gets to go on a field trip,were soooooo proud of him! I thank God everyday for both my beautiful boys,I wouldn't trade them for the world.
Anyways that's about it for me. I will post more later. |
posted by angelwings
@
1:31 PM
|
|
|
|
|
Friday, April 11, 2008 |
|
Well,we had a very eventful day today,lol. We started out by going to see the eqpt guy,to get new shoe inserts,had to be there at 8am. Brady was pretty good there,a little afraid that the guy might give him a shot or take blood,I think. Once he realised that all he had to do was put his bare foot down into a foam substance,for a mold,he thought it was pretty cool. So cool that he decided to try and put both feet in at one time,lol.
Anyway we were in and out of there pretty fast. I have a wedding to go to tomorrow,so I needed to get something to wear,don't get to dress up much with Brady around,lol. So we headed out to the store,I chose the one that had carts,as I didn't have a stroller with me. Brady was in a really good mood,but was very busy. He snatched some tags off clothes as we strolled by,luckily the lady that works there,said on not a problem,we can zip them back on in a second. So we headed to the dressing room,found some skirts,but no tops. While I was tyring on the clothes,Brady decided he had had enough shopping,so decided to go potty in his pants,yipppeeee. I quickly changed,only finding two bottoms,and no time to look for a top. We paid for our stuff,went to the car and changed him.
I decided to go to another store to see what they had,as I just wasn't finding anything at the other store. Well the store we went to,didn't have carts,and again,no stroller. Brady was such a little helper,he also snatched tags off clothes,and hangers off the racks as we were walking past. He also managed to grab a woman in one of the checkout lines, she was really nice,and started talking to him. He wanted to go one way,yet I was making him go another,so he was yelling throughout the store and having sit down strikes in the middle of the isles!! I did find an outfit there and we went to try it on. Brady was such a little helper,yet again,he was taking everything off the hangers,piling them in the middle of the floor for me,thanks Brady,lol. I asked him if he liked my outfit and he shook his head yes,so I guess he approved,great fashion consultant,lol. Meanwhile,I start hanging the clothes back on hangers,and he decides that mommy should flash everyone,so he opens the dressing room door,wide open,for the world to see,uhhhhhhhhh. I shut the door and hurriedly got dressed,ready to go home,Im exhausted by this point. We went over in the shoe department to pay for our stuff,where Brady decides that a nice lady there,trying on shoes,really needs his help. He goes over to her and starts taking the plastic inserts out of her new shoes. She just smiles and says oh hes ok and tells him hi. He then started trying to operate the credit card machine. I ended up putting him in a leg lock,just so I could pay for my stuff,without him tearing out all the magazines at the counter and throwing shoes down off the racks. But we did make it out,finally. We then had to go to the post office,to send a package,the most fun part of our day. We had to fill out some forms,with addresses,things like that on them. So while I'm filling out forms,Brady keeps running away from me,snatching down brochures,signs off the walls,etc. I think I must have stopped with each single letter,to go chase him down. There is no tellings what all I put on that form,hopefully it was right,lol. Anyway I kept filling the papers out,meanwhile Brady is still running away from me,greeting each person that walks in the door. He was especially attracted to one particular lady. I couldn't keep him away from her for some reason. She was trying to fill out forms as well. He kept going over to her,grabbing her arm,trying to hug her. She was so sweet to him,she kept talking to him,telling him how sweet he was. She asked me if she could give him a hug,and I said of course you can. So while hes giving her a hug,he decides to take a taste of her arm :0 I quickly yanked his mouth off her arm,before he was able to bite her. I apologized and explained to her that he was giving her love,but she didn't mind it at all,thank goodness. He kept grabbing at her,yanking her cell phone off the table. I finally had to put him in another leg lock and quickly finish the forms. He still managed to get away and climb under the table to go out the other side,I had to run around and grab him,before he grabbed someone else. I managed to get the forms done,but while I was paying for them,he started working on the credit card machine again. I told the guy working there that I would just leave Brady with him,to work for the day,lol.
After that excitement we went and got dad to go to lunch with us. Would you believe that Brady was a perfect little Angel the entire time his dad was with us,little stinker!!!!!!!!!!!
Anyway were home now,no more shopping for a long,long time!!!!! I am totally exhausted,gonna get some rest,I hope. Will post more later. |
posted by angelwings
@
8:13 PM
|
|
|
|
|
Wednesday, April 09, 2008 |
|
| Today is a sad day for the Angelman community,as we have lost one of own,a leading Angelman Specialists, Dr Wagstaff . He was one of the most caring,compassionate doctors that we ever had the pleasure of meeting. He truly has impacted so many lives in the short time that he was with us. He will be greatly missed by his friends,family and the Angelman Commnunity. This is such a tragic loss to everyone that he was involved with. Please keep Dr.Wagstaff's immediate family and his Angelman family,in your thoughts and prayers. We will be walking in May for the Angelman Organization,but also in memory of Dr.Wagstaff as well. |
posted by angelwings
@
10:50 AM
|
|
|
|
|
Tuesday, April 08, 2008 |
|
Just wanted to post a quick update. Brady is doing really well. He has done several things today,that I am so proud of. The first is that he put his legs in the right holes of each pants leg,without even being prompted. Another thing he done was when asked if wanted a bath,he didnt want to answer,but I said if you want a bath you have to use your words,so he quickly started shaking his head yes,yes,yes. Another thing he has learned is to open the doors on my van and his daddys truck. He pulls the handles and pulls the doors open,he is so proud of himself,lol. I had to lock the doors when we were outside today,he kept opening the doors and trying to climb in,lol. The other cool thing he has learned is how to blow the horn on his riding toy. This is an outside toy,that he insisted on bringing in,like we really have the room.... Anyway he climbs in this toy and toots the horn and just giggles,he loves it.
His skills and comprehension continues to improve on a daily basis. We still have not seen any seizures since getting the VNS. He is still sleeping through the night. I know that the absense of seizures and the fact that hes finally getting some rest,has really played a key role in his development these days.
Anyway thats about it for now,I will post more later. |
posted by angelwings
@
7:53 PM
|
|
|
|
|
Friday, April 04, 2008 |
|
Well,we just got back from Chucky Cheese. We had a good time,but Brady was more interested in socializing,than in playing. He made a lot of new friends,lol. He sat in the highchair at the table and grabbed everyone that walked by. Everyone was super nice,they all stopped and played with him,it just amazes me,the effect that he has on people.
Anyway when we first got there,Peyton went up in the slide,while me,Craig and Brady ordered our food. Peyton came rushing back to us saying that some kid,like middle school age, bit him! My first instinct was to snatch this kid out and confront him. I questioned Peyton a little more about it,and he explained that he thought this kid had special needs. He said that he kept following Peyton around in the tunnels and after he bit peyton,he giggled and kept pointing to his mouth,but he never spoke a word. I was really proud of Peyton for recognizing that this child was different,and not retaliating against him. Brady really has taught Peyton so much. Just before Peyton came up to us telling us this,Brady grabs some poor little boys hair. The little boy turns around and yells hey,but sees Brady and quickly calms down,of course I apologized. So when Peyton comes up to me telling me about the boy that bit him,I realized just how easily that could have been Brady biting someone,and that I would hope if he bit some other child,they would react just as Peyton did. Anyway Peyton didnt have any other run ins with him the rest of the night. Craig seen him later on though,and said that he did have special needs. Im so thankful that we didnt say anything to this child.
Brady has been really sweet today,but wide open of course. We have had a good day,all in all. His incisions look really good,where they took out the stitches. I dont see any signs of stitches left in,but were going back to the doc next week,just to be on the safe side. Anyways,I will keep you posted on any changes. |
posted by angelwings
@
11:50 PM
|
|
|
|
|
Thursday, April 03, 2008 |
|
| Well,we made it back from the doc today. It was as much fun as I thought it would be... It took three of us to hold Brady down,but he still managed to wiggle all over the place. The doctor cut the stitches and got a few or them out with no trouble,but I think he got a little deep in one of them,and it was on after that. Brady decided he had,had enough and meant that he wasn't going to let us do anything else with him. The doc got most of the stitches out,but were thinking there might be some small pieces left in. It just got to the point that he had to stop. Brady had red marks all over him,from us holding him down,his incision was bleeding. He was so ticked off,he was crying real tears,which is unusual for him. He was sweating and was so red faced,I felt really bad for him. Soooooo,we are going back next week,to let them have another look,to be sure that the stitches are all out,and that the incisions look ok. We are all so tired,Brady didn't get in bed til after 1am and we were back up at 5:30am. So were heading to bed,I will keep yall posted on anything new and post a better update when Im not so tired. Thanks for all the thoughts and prayers. |
posted by angelwings
@
8:16 PM
|
|
|
|
|
|
As many of you know,Brady still has stitches from his surgery. He has stitches in his neck and in his chest. They don't usually put stitches on the outside with VNS surgery,but in his case,they chose to do so. We were all concerned that he might tear open his incisions if he didn't have some extra stitches. So anyway we assumed that stitches would dissolve,as we got no instructions on them when we were released from the hospital. Well,the stitches are still there,show no signs of dissolving. So I spoke with the surgery dpt at the first of the week,she was a bit surprised to learn that he had stitches on the outside. We already had an appt scheduled for tomorrow,so we are going to see about them then. They seem to be growing into his incisions. So if they have to take them out tomorrow,Im afraid its going to be an ordeal. I know that when Brady had staples in his head,it was a nightmare to get them out,we couldn't hold him down. He ended up bleeding all over the place. Some of the staples were broken,which made them more difficult to get out. So hopefully the stitches will be easier to remove. Say a prayer for our little man.
Everything else is great here. Brady has been such a sweetheart today. We found a kids tune station on the tv,he was mesmerised,lol. He would sway side to side at the slow songs,and shake his butt when the fast songs came on,lol. He has been so happy. We played outside this afternoon,he loves his new sand.
Anyways he seems to be having some trouble falling asleep tonight,so Im gonna go rock him for a while.
I will update tomorrow night,on how the docs visit goes. Nite yall. |
posted by angelwings
@
12:40 AM
|
|
|
|
|
| |
