Click Here to Read Brady's Story
Wednesday, May 23, 2007
Update....
Just wanted to let everyone know that we haven't been posting much lately because we have had so much going on here. We had an Aunt to pass away one week and my grandad the next. Our Aunt had cancer and was pretty sick for a long time. Our grandad had Parkinson's Disease and was also sick for a very long time. He was in the hospital for 2 weeks after getting choked while eating supper one night. He developed pneumonia and became very sick. Its been a tough time lately,but slowly were getting back to normal,or normal for us that is,lol.
Anyway Peyton had a bicycle accident and ended up at the urologist,but hes ok now,just no physical education for a month. A couple days later,Brady fell backwards while climbing into bed with us about 4am one morning and ended up with staples in his head. He had a very hard time when we went to get them out,one was hung and we ended up at the hospital to get it out. He cried so hard he had little strawberries all over his face. But its all healed up and hes much better now.
Hes trying so hard to talk these days,its amazing to hear him. He talked to me the entire ride back from my grandmas house tonight. I would ask him a question and he would answer,of course I didn't know what he was saying,but that's ok,its precious to hear that little voice talking back to me. His new favorite phrase is, "my mama". He loves saying it because it always gets my attention. He also says "ok" all the time. I will tell him to do something,or that were going to do something and he will say "ok",lol. He also says mama,mama,mama all the time. And he calls for his buba.I can tell that he is asking where his buba is when he says it sometimes,because he will say it and look at the door. When bubas bus pulls up,he will start in calling buba. He has recently started using ga ga, consistently,that's what he calls my grandma. Of course she just melts when he says this,and he gets anything he wants,lol.
He grabbed maw maw when we went to her house last night and dragged her over to her rocking chair to rock him. Hes a little boy that knows exactly what he wants and hes getting so good at letting us know. I never thought that someone who was unable to talk,would be so good at communicating with very few words,its amazing to watch him grow. At this point his words consist of buba,ga ga,my mama,mama,da da,bu bu for blue,maw maw,nana,mumba,(whatever that means),ok,and a ton of other sounds,were not sure about.
Brady has also learned to open the door and go outside by himself,not a good thing! He got outside yesterday and I found him in the sandbox. So I let him play and told his brother and other kids to watch him a sec while I ran inside. Well when I got back outside,he was gone! I looked to the end of the house and he was rounding the corner. He was headed to the pool! So much for the other kids looking after him for less than a minute,lol.
Brady is also walking really well these days. He can walk up to 15 or 20 ft at a time,unassisted,but its only when he wants to do it.
Anyway just wanted to update everyone on whats happening around here lately.

posted by angelwings @ 11:29 PM
   1 comments
Tuesday, May 22, 2007
Bradys bubble gum!
Well I awoke this morning to my arm being stuck together. So I got out of bed and turned the light on,to find my arm covered in bubble gum! Well Brady was in my bed,and sleeping on my arm,so I knew immediately where the bubble gum had come from. So I started checking Brady over and found gum all over his chest,arms hands,and all in his hair! Apparently he had found some gum on his journey to get in bed with us in the middle of the night and he decided to not only chew it,but string all over me,himself and my bed! So anyway I was trying to get ready to go to a party at Peytons school and only had one hour to find someone to cut Bradys hair and make it to the party in time. I found someone to cut his hair and we rushed out to get it done. We ended up having to shave his head because the gum was so bad. So now I have a nearly bald headed little boy,still covered in gum,lol. I cant get the rest of it off him,so I guess hes going to have to wear it off. But the good news is,we did make it to the party in time,lol.

posted by angelwings @ 11:56 PM
   0 comments
Sunday, May 20, 2007
Wrong date on last pictures.
Just wanted to let everyone know that the pictures that were just posted,were from May 19,2007,the date on them is not correct. The date on my camera jumps back to that date for some reason and I forgot to change it back this time. Just wanted to clear up any confusion.

posted by angelwings @ 9:27 AM
   0 comments
Saturday, May 19, 2007
2007 Angelman Walk a Thon










































































































posted by angelwings @ 6:42 PM
   2 comments
Friday, May 11, 2007
God Sent to Me an Angel
God Sent to Me an Angel
By Paul Dammon 11/96
God sent to me an angel,it had a broken wing.I bent my head and wondered"How could God do such a thing?"
When I asked the Fatherwhy He sent this child to me,the answer was forthcoming,He said "Listen and you'll see."
"My children are all precious,and none is like the rest.Each one to me is special,and the least is as the best.
I send each one from Heavenand I place it in the careof those who know my mercy,those with love to spare.
Sometimes I take them back again.Sometimes I let them stay.No matter what may happenI am never far away.
So if you find an angeland you don't know what to do,remember, I am with you,love is all I ask of you."

posted by angelwings @ 8:48 PM
   0 comments
Thursday, May 03, 2007
Had to borrow this one from a fellow Angelman mommy,its just to great not to post,thanks Laurie,hope you dont mind.Happy Mothers Day to all the mommys out there!

Some Mothers Get Babies With Something More Written By: Lori Borgman Columnist and Speaker My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder!

posted by angelwings @ 11:20 PM
   1 comments
Tuesday, May 01, 2007
Having fun at beach.


































































posted by angelwings @ 11:41 PM
   1 comments


What is Angelman Syndrome?

                 

About Brady

Read Brady's Story Here   

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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