Walking in my shoes… WALK A THON 08!
We just got back from the 2008 walk a thon in Buffalo. What an awesome trip! Aunt Casey and Rylan joined us for the road trip caravan. Nana, Mia, Mom and I in one car and Casey and Ry in the other (Daddy met us up there). All the way there it was snacks, movies and lots of commentary (from me). You see I have found my voice and this thing called babbling is totally cool. I started to discover it when my sister was making all these kind of noises and mom and dad were responding. So I thought I’d try it out too. I tried it about a year ago, but it didn’t stick. I’m a fan of the bbbbb sound and the mmmmm, but sometimes I get an L or a K out depending on my mood. But it makes for a good story.
We went to the Buffalo Zoo on Friday and we had the whole park to ourselves, so that meant we could create some good times without getting in trouble. We saw monkeys, who I swear wanted me to join them for a bite to eat, but mom said no. We also saw zebras, hyenas, rams, otters, bears, polar bears and peacocks. The peacock actually was a construction Foreman (see our photos at www.ariannasawesomeadventure.org). The gorilla was very hungry and looked a little grumpy. We also saw a rhinoceros, well only his hind end since he wouldn’t turn around. We almost had to spend the night because we couldn’t figure out how to get out. I was all ready to shack up with the monkeys, but then mom found the way out. Bummer!
That night we saw daddy’s friend Jon who lives in Buffalo, he came to dinner with us. Mia and Rylan made him share his food!
The next morning I got up bright and early with mom and nana and had breakfast. We all got ready for the walk and saw there was NO RAIN! I was hoping for a soak fest, but mom and dad were happy cuz they don’t like to be cold and wet. Since they said it was going to rain, the walk organizers (RJ’s mom- thanks Mary!) had umbrella’s for the parents who were afraid of melting. I opted for the rain parka (since it mom strongly encouraged me to wear it). We all had matching Adventure T-shirts and name tags courtesy of mom!
I got to walk about 1/4 mile of the 2 mile walk (up and down hills!) then I got tired so I made mom chauffeur me for the rest of the walk.
We met some wonderful friends in person (who we know from our online adventures) and some new friends. We can’t wait to see everyone again at the next adventure.
On the way home we had to go to cracker barrel, since they are so good to us, and have some kickin food. Sister had a good time in the gift shop playing with the toys. Once we got back on the road headed for home we popped in some DVD’s and settled in for the long haul… until the bathroom breaks, the gas stops, and more bathroom breaks… I wanted to watch my own dvd on my lap so I started to harness the player- mom got mad and took it away. I was babbling away to her in my own language… "mom don’t you understand I can do it by myself, I want to watch my own dvd and it’s too far away". Well mom said if I could say Movie, she’d give me the player. Well I no sooner go MMMMMooooo out and she handed me the dvd player and smiled. I kept it on my lap a long time while I watched my movie. Mom was so proud.
I heard from Maggie her yard sale (fundraiser for the most rockin therapy bathroom EVER!) was a big hit. Sounds like the Sheldon-Hickey Angel Spa will be opening soon. I’ve already put in my reservations for a personal spa appointment with Maggie! Congrats girl, I can’t wait!
So our next adventure is this weekend… off to LI… I wonder who will hit us on the GW bridge this year? All I know is mom better bring lots of snacks and entertainment cuz Dad says we aren’t stopping!
If you still want to donate to the walk you can go to our page at www.firstgiving.com/A3
Thanks everyone for your support! It really is making a difference… don’t believe me… stop by sometime and see all the cool stuff I can do, I’ll change your mind! - Peace out - Ari
Uncategorized | Comment (0)Ari Sees Horton Hears
Today we have good news to share and some bad news to share.
We’re sorry to share that we have lost one of our Angels on Earth. Sweet Ashely Williams was just a little older than Arianna. She was from the Birmingham Area. Indeed it is a sad week for the whole Angelman Community. Please join us in lighting a candle this evening for Ashley. We hope that she looks on us from heaven and that she is able to give Dr. Wagstaff a hug. We offer our deepest sympathy to the Williams family.
On a brighter note… Ari should be blogging this next part…
- Hey all, Ari here… so Nana took me to my first big girl full length feature film yesterday. The Autism community, Arc, Pathways, and the Palace theatre sponsored a movie event for us extra special kids. We got to choose between Happy Feet and Horton Hears a Who. I chose the Whooville! Nana bailed me out from school early in the AM… we got popcorn, snacks, and even some press time: http://news10now.com/Video/video_pop.aspx?vids=70112&sid=1079&rid=1115
I sat in my chair and lounged while we watched the movie and had popcorn. It was very kewl! I was so excited to tell all my friends at school!
That night we went for a wagon ride to the diner and then mom and I played for a while. I thought— well since I’m on a roll — why not work on saying something? So mom and I worked on B B B B Baaaaahhhl. I got it out once, then did some more BBBBB while we tapped on the ball. Maybe I’ll do some more tomorrow.
Tonight the zins (cousins) are coming from Florida. Good thing it’s nice out here, I was worried about em freezin. I think I’ll take them out and show them the town… wagon style.
So to finish up it’s been a roller coaster week and it’s not even Friday! Just remember, life is short, smile and eat lots of ice cream.
Peace out- Ari
Uncategorized | Comment (0)Thank you Dr. Joe Wagstaff
It’s mom writing today’s post. Oh you wouldn’t believe the strides Arianna is making these days. She’s becoming quite the little lady. She loves her signing time videos and is beginning to show interest in coloring. I start this post with Ari’s accomplishments to honor the memory of Dr. Joe Wagstaff. Dr. Wagstaff was a leading Genetic researcher with Angelman Syndrome, he passed away this week in a tragic accident in the mountains. Dr. Wagstaff spent many selfless hours with families of children with AS calming us, easing our fears, and explaining the unexplainable. He was the one that helped us get Arianna started on melatonin therapy for sleeping. He will be sorely missed. So please as you finish reading this blog, take a moment and say a prayer for his family, that they find comfort through this sad time.
I also plea that you make a donation to the walk a thon www.firstgiving.com/A3 . Now more than ever we will need a new research champion and with the funds we raise from the walk we can help support the research Dr. Wagstaff had to leave. Every dollar counts. Yes even the $1.00 donation makes a difference (it can postage test results).
Thank you for your support for our family, Arianna, and Angelman Syndrome. Ari and I look forward to the next post being a joyous one.
With Love- Mom
Uncategorized | Comment (1)February - March Madness Updates
Wow March is almost over, and February flew like the wind in the snow storm. My B-day month was CRAZY! We had lots of fun snow days, not so fun sick days, and of course the week long Birthday extravaganza!
It was sooooo cold! However it was pretty nice out on my birthday, lots of sunshine. We had a cool party at Miss Lisa’s church, full of friends, cake, prizes and of course more cake! It was nice to see all my friends come to sing happy birthday to me, thanks to everyone for making it a rocking good time!
Days after we celebrated we got socked by a storm and the flu. I’m going on strike against the flu shot. It hurts, and I still got sick… bum mer! Thus started my next round of antibiotics. In true toddler fashion I shared my germies with Mia, Mom, Dad, and Nana.
Since I have an overabundance of green snot, mom and dad thought it would be a good idea to take me to see a new doctor. So off we went to Rochester to see the Snot Doc. It of course was in a snow storm, so we had to leave early and make it a quick trip. It stopped snowing half way to the doctor, but then mom had car trouble… the car would only go really slow so we lost some time on the way there. We only saw the Snot Doc for a couple of minutes and he jabbered with mom and dad about what to do and then we went to Mikie D’s for some French fries and Yogurt parfait! My fave!
Of course on the way home the car was probably sicker than I was (I thought it was going to start blowing green snot) and the snow was coming down. Boy was mama anxious to get home. I was too, but for a different reason. (You can catch the rest of this story from mom as it is soooo not going to be posted). We made it home safe and sound, but the car is going to the doctor soon.
I’m doing very well in school… I am using my picture cards and coloring a lot more. I really like my aqua doodle and play with that a lot. I’m riding my tricycle inside, but soon we’ll be able to out onto the playground to ride, I can’t wait.
AMELIA UPDATE: My sister and I are becoming close friends. She pulls my hair and I pull hers. We like to feed each other cheerios, and I like to steal food off her tray J We play tug –o –war in the back seat of the car and now that she’s crawling, she follows me everywhere! She’s even got her first tooth! I taught her how to put blocks in the farmhouse to make it sing songs, and showed her how to tap tap tap my ball. Yeah, she thinks I’m pretty cool, she’s not so bad either.
We just got back from a big ole trip to Boston (GO YANKEES)!
A big shout out to Miss Janette, the GCRC Crew and Dr. Tan! We went to the Children’s Hospital for a study all about ME! (Well really it is all about Angelman Syndrome).
I had to do a lot of tests (you think I was taking the entrance exams for med school or the LSATS). I passed! The doctors think I’m really smart and cute and that I should be President. (I’ll let mom tell you all the other stuff they talked about…)
I did have to do that dumb test where they turn me into a robot to read my mind. Yeah, right, like I was totally going to let them do that. I gave it my best Manning shot, but the DVD’s got the best of me and I fell asleep (2 hours later). Mom and Nana were pretty exhausted. We got to go to Maggiano’s for some good carbs that night for dinner (I fell asleep on the table).
Then it was up again the next morning for another day of adventures at the hospital. On our way out the door we saw a Harvard Police officer, and we thought he was going to hold the door for us and all our stuff, nope. Instead he thanked us for auto opening the door so he could scoot right in while talking on his cell phone… hmmmm “’s Finest”?
At the end of our visit Dr. Tan came in with a goodie bag, all for me… I really liked my trip and everyone at GCRC was very nice and cool (even the nurses who had to take my blood and blood pressure- you passed my test!)Boston
On the way home we used our GPS (or as mom likes to call it Dad’s second wife) to find our way to Buca di Beppo’s in Albany for Dinner. YUMMM MMMMEEEE Mia and I were very good girls in the car, and Nana sat in the back to play VJ with the DVD’s. I was totally digging on High School Musical, Signing Times (thanks Maggie) and Fraggle Rock.
So I’m sure there’s more stuff that I missed on this post (cuz gosh mom, it’s been almost 2 months since you let me on the computer!) so if I remember anything or missed a shout out… I’ll send out an update. Hopefully mom can get her stuff together and help me post a little more often.
Till then please send the Magster a get well email, since she had to take an overnighter to the O. R. I’m sure she’ll be up to chaos in no time!
PS The AS WALK A THON fundraising has begun… checkout our fundraising page at www.firstgiving.com/A3 We are Walking in BUFFALO NY this year. Please join us!
I’m sure mom will post more about that soon on the Website www.ariannasawesomeadventure.org PEACE OUT! - arianna
Uncategorized | Comment (1)Happy New Year… Go Vote Arianna for the Chaotic Party
OMG mom you have so not kept up with my Blog… I mean it’s not like you have two kids, a full time job, and housework to do, not to mention being my personal assistant. Jeepers! Next thing you know we won’t see a post til the next President is picked.
So the last time we left the scene of the crime was way before the holiday chaos. To update you on the munchkin… Mia can say mamamamamama, yeah I thought it was kinda cool but I am very much over it now, bla bla bla- pulling hair gets a much cooler response that mamamamama. Today she actually came out with a da de de da. I think she’s working on daddy but who knows. I’ll stick to singing- words are highly over rated!
We all got colds for holiday gifts. Complete with sick days from school (ha! mom thought she was going to have three days to organize our chaos). Green snot for everyone. Then it was off to sunny warm Florida! Except it wasn’t sunny or warm… discuss! When we got off the plane I saw Nana who came to pick us up at the airport (apparently she had flown down ahead of us) and I thought "gosh that was an aweful lot of trouble just to see Nana, since she lives a mile away". Then I saw Aunt Susie and Uncle Michael and Cooper and Sara and Peter and Leah, but they we weren’t at the restaurant, we were in Florida. Bizzare…it’s like they all telaported to Florida with me. So, that was way cool and we all went to Sea World. After that Mom,Dad,Mia and I went to West Palm with Bubbe and Grampa, It snowed, I didn’t mind… mom and dad were a little miffed.But by the end of the trip I was playing at the beach in the world’s largest swimming pool where we hung out with Mr. Alex and Miss Anna. Surfs up dude… ho daddy! And to top it off there were two new babies to drool over (my cousins AJ & JJ).
So on the way back we got to spend an extra long time on the Airplane while they fixed something that was broken. I was such a good girl, and so was Mia. So 5 1/2 hours later we were in Detroit and we almost got to have a slumber party in the airport… but Mom was soooo mad they let us on the next flight out. Yeah, she let the mean lady out. So just to make it interesting… I had to go potty just as we were about to leave the gate. So in record time mom took me to the potty (which is about as big as a broom closet mom says) and we were done in record time. I was pretty proud of myself.
We made it home safe and sound and it was back to school and work as usual, except I’m not quite ready to get back into the studious part of life so I’m goofing off a bit. Maybe I’ll get back to work next week. Who knows! Mia got to stay home sick most of this week… but I got to have cupcakes for Nishant’s birthday so I guess that’s a good payoff.
BTW 2 weeks till my big 4 YEAR OLD BIRTHDAY BASH! I can’t wait… oh the chaos that we’ll create! In full party fashion it will be a Mardis Gras theme. You can’t beat beads and cake!
Now would be a good time for me to announce my candidacy for President of the United States of Chaos. I promise to make eveyone’s living room a place where they can come and kick off their shoes, kick up their heels and party till the cows come home and kick them off the couch! No laundry basket will go unturned, no plate of food will go untouched, no one will sleep, and all will be tap tap tap and ya ya ya! Vote for me and you’ll never have to clean again. Ari for President, would a face like mine lie to you?
Uncategorized | Comment (0)The Official Arianna Website
It’s Official… Ariannasawesomeadventure.org is our new homepage! Of course you can always catch me here at the blog, but we’ll be posting pics and other great stuff on our new website. We had to make more room for the whole family to get involved. It’s still under a lot of construction (much like most of our roads) so there may be a bit of bottlenecking, but we promise that our roadwork will be done before the road crews break up for the winter.
So what have I been up to? Well… school is great, I’m learning a lot and surprising everyone. I have learned to ride a tricycle (although I haven’t got the steering part down just yet… and I have only been pulled over twice for speeding!). My picture communciation is advancing quickly and utensils have made their way to the dinner table.
Arianna’s awesome team meetings are getting to be all the rave. You have to join our party sometime… there’s even pizza! We couldn’t ask for a better team of players (even if they were former Yankees! - sorry A-Rod).
Yesterday was halloween and I was a spider, though mom says I acted more like Miss Muffett on her tuffett eating her curds and way… (it was really chicken nuggets and apples). I really didn’t care for the candy… but I loved all the costumes and the people. Mia was a lady bug. Yeah she was pretty cute. She’s starting to blow raspberries and she also eats cereal. I’m gonna teach her how to blow raspberries while eating cereal… that’ll be cool!
It’s almost time to order Angelman Calendars. If anyone would like to order we’ll post the link to Mag’s website in the next edition of the blog. We’ll be doing some other worthy fundraisers after the holidays… so keep on the look out.
Until the next time… keep smiling, keep laughing, and don’t take yourself too seriously. Happy All Saints Day… oh… and if you see my uncle Bobby— wish him a happy 30th birthday… old da doo dah DAY!
Uncategorized | Comment (0)Back to School
Since I’m on all nighter #2 for the weekend, I begged mom to let me get on the computer for an update. We’ve been so busy since we got back from St. Louis that I’ve neglected my usual updates. So I’ll have to give you the abbreviated end of summer story…
Sissy is growing sassier every day. She has managed to introduce herself to her hands and feet, and is grasping at items very well. Yes folks she has mastered the art of hair pulling. She has a lot to say, so we have conversations over morning coffee (well Mia and I don’t have coffee but momma does).
Along with a new sister I also have two new cousins AJ and JJ. They’re 2 months younger than Mia. They’re itty bitty, but way cute!
I’m officially a preschooler. I have 18 kids in my class and they are great friends and helpers. They encourage me on our walks to the park, help me find my spot at circle time, and they love my little sister. I’ve got the best team for the year. We had to say goodbye to Mr. Lee and Ms. Heather but I get to see them sometimes at the store and at school. We welcomed Ms. Wendy, Ms. Janelle, Ms. Marie, and Ms. Viki. I am learning to use more pictures and signs to communicate with the other kids, and I am learning to ride a tricycle.
Along with my preschool transition, Mom and Dad sprung and bought me a wicked cool jungle gym. They call it a bunk bed, but I don’t see myself sleeping in it. It makes for an excellent place for my parents to hang out, but for me I choose their bed. Lots of room, a bigger TV, it’s my palace. Maybe I might go into my room to play and for the occasional cat nap with the cat, but for the night… yeah right!
I have to pause and ask everyone to stop and say a little prayer for some of my friends who have been in the hospital. First is Kassy, I think she’s been in the longest. Her mom says she’s out of the PICU (pediatric intensive care unit) and that she may get to come home soon. Our buddy Maggie went into the ICU when we were up there visiting last month, that was really scary- but we stayed strong and sent her lots of prayers and wishes. She made a fantastic turn and came home this week. WELCOME HOME MAGGIE! Ainsley is now in the PICU with the same sickness as Maggie, I’m sure it’s pretty scary for her so we are going to wish on a star every night and say an extra prayer so she gets to come home soon too! We also have to send big hugs to Neel who is also making his recovery.
I’m trying to get mom to post some more recent pictures, but she says that I absolutely have got to sleep this weekend or else. I’ll try to post more as part of my homework from school, but it all depends on whether or not mom will let me on the computer. With Angel Hugs and Love- Ari (psst… hey Mia… Say Hi… Hi Everybody, I guess sissy is up for sharing — here’s some bubbles for your all — kisses , Amelia Eve… ok Mia that’s enough- Peace)
Uncategorized | Comment (0)St. Louis part 1
Seize the adventure! We’re on the road back from our latest adventure to St. Louis MO for our first Angelman Syndrome Conference. Boy did we have one rockin’ time!
First thing’s first… we need to thank everyone who helped make this trip happen… to our family, friends, neighbors, and complete strangers who participated in Arianna’s Awesome Yard Sale. We raised enough money to cover my portion of the trip (which included some pretty cool adventures like the Zoo, Water Park, and Face Painting). To Great Grandpa for letting us borrow his big car, to grandpa for the gas, Bubbe and Grampa for their support. Thanks to uncle DooDah for watching the animals and my toys. Thanks to Nana for taking such good care of sissy and I. To the Somrack family for letting us stay on their farm (sorry I decided to pull the all nighter on a school night).
Along the way to St. Louis we stopped at several restaurants called Cracker Barrel, they have awesome mac and cheese. I need to say a special thank you to their wait staff who is always excellent with me and the family (we take up a lot of room and I like to leave quite the mess). Especially Wanda in Columbus, and Debbie in Indianapolis.
Sissy and I were very good girls in the car. Nana kept us company in the back seat and played DJ for the trip. She also kept me fed between rest stops. We went through PA, OH, IN, IL and ended up in MO. Each state had something amusing to offer, especially Indiana, there was a drive through that sold beer by the can… we thought that was kind of weird.
The rest stops along the way were beautiful and I had a lot of space to run around without getting into trouble.
I figured out that if I climb on the luggage carts I get free rides at the hotel, loads of fun. Our hotel was right across from the convention center. It was really nice, and there was a pool! There were other conference attendees there too, so we got to spend some time with them in the pool.
The first night in St. Louis we had a big banquet with all the families. It was awesome to see so many of my online friends. I got to give Maggie a great big hug. I really missed her and her family a whole bunch!
So now it is time to shout out to all my friends… Hi Mag, Erin, Audrey, Charissa, Kate, Louis, Cole, Danielle, Karsen, Caden, Aiden, Aiden & sis Cloe, Noah & Talia, Shlomo & Family, Maddie, Drew, and all the other awesome friends mom and dad met. I have to give a special hope and prayer to our friend Kassy who is in the hospital. If everyone could keep her in your thoughts and prayers for her fast and healthy recovery we would appreciate it.
Mom and Dad learned so much from the experts, especially Dr. Calculator, Terry Jo Bichell, Jackie Golden, and Kim Marchman… thank you for helping them understand me better you are awesome! Mom says that her and Daddy have a lot of fun things to bring into our new school year, I’m sooooo looking forward to them, especially if it includes food and a pool!
I learned a lot with Nana on our adventures. We got to know so many other kids and their families. Sharing stories was amazing, and there was so much fun and happiness.
The service in St. Louis was Amazing, especially at the convention. Greg and Tori took wonderful care of us and we will always keep a special place in our hearts for them. Thank you gentleman for helping Mom and Dad and for the extra bananas! The staff at the Drury was very helpful too (sorry I left the floor such a mess).
We’re in Columbus now and I just wanted to get this first post out before we got home. I am hoping to get the pictures up soon after we get home and then have a little more from the trip.
All in all we had an excellent time, we learned that our futures are so bright and that there is a lot to look forward to. The challenges ahead can be successfully overcome if we take them in bite size pieces, but I -of course- will make them interesting along the way! Most of all we thank those in our lives who help us along the way… from holding the door to sponsoring our walk a thon, from getting me an extra banana to making sure the hot food doesn’t get too close to my “octopus hands”. Friends, family, strangers, and kind souls we have not met yet… thank you and god bless you all!
With great big hugs- Arianna (from the latest awesome adventure)
Uncategorized | Comment (1)Party Week! July 6-16
Happy Anniversary Mom and Dad! And Happy Birthday Mommy!
So daddy got this fat cake for their anniversary. It looked just like the one in their wedding pictures. It was soooo yummy, I almost ate it all! Lots of buttercream frosting and raspberries. Ooooh sooo good! Mommy sent Dad to the racetrack to play with the big race cars this weekend, while we played in the water with nana. I love my pool and water table. I think the best part is the misty hose that hooks to the water table. I have started practicing on my potty, but I have a looooong way to go (so says momma) but I almost made it once with Nana on Saturday!
Mom’s birthday weeks starts today. We are spending most of it getting ready for the yard sale to benefit our trip to the Angelman Syndrome Conference in St. Louis. I am baking cookies for my part. Mom and Nana are going through both houses to gather items for the sale. This means lots of stuff to get into!
Swimming lessons have been great! I am all over being in the water by myself and swimming all over the pool. I’m determined to get down the slide, next the diving board!
I waved bye bye this morning when Nana and Mom dropped me off at school. I have also master the big kid slide at the YMCA all by myself. Oh the things I can do when mom and dad ARE looking! I never stop surprising them. I even push my sister in her swing, even when she doesn’t ask me to J
By the way, sissy Mia is getting big. A Whole wopping 9lbs 9oz and 22 inches long. She’s starting to make faces, which I totally think is cool. Mom should be putting some more pics up soon.
So once again, Happy Anniversary (mom and dad) and Happy Birthday to mom (does this mean more cake?)
T minus 13 days til St. Louis. BTW- yard (and bake) sale begins at 8am on Saturday and goes til 3pm. Stop by if you wish! —- Smiles to you— Arianna
Uncategorized | Comment (0)Introducing Amelia Eve 5-31-07
We must apologize for the delay of the blog.. Between new babies being born and the amount of thunderstorms that knock out our communication and entertainment services we have been a little backlogged.
Now we return to our previously scheduled post…
I have to announce the birth of her royal highness the newest princess addition to the family (which now makes me the Duchess) Amelia (Mia) Eve Manning. She was born on Thursday May 31st at 2:55pm weighing in at 8 pounds 7 ounces and 20.5 inches in length. It was kinda crazy, mom-dad- and nana dropped me off at school at 7am and nana picked me up at 5pm and told me I had a new sister waiting for me! That was quite the shopping trip!
She is my opposite to the T (with the exception of that Winning Manning Smile). Dark Hair, Dark Eyes (so far) and Dark Complexion. Overall pretty cute. What we do have in common is our impeccable ability to incite riots! Amelia was one of 12 to be born on the 31st and every time a new baby came in she would start to cry to get everyone else on board. Kind of like the welcome wagon!
She likes to cuddle with me. I’ve been a good big sister, tickling her feet when she cries, giving her love taps, and stealing her binky and blanket any chance I get.
We have had some fun the past 10 days. We’ve gone on stroller/wagon rides, to the fair, to the parade (she slept the whole time) and she likes to pull all nighters too! Mom and Dad are doing pretty well with their new schedules. They have had lots of help from the rest of t the family too.
Next weekend we are going to Long Island to see Daddy’s family and have a party for my new cousins who are going to be born next month. I love being the oldest.
Check out our new family pics on the blog site. More to come! Peace Out!- Ari & Mia
Uncategorized | Comment (0)