I’m ready for my close up…

Nope, no baby sister yet!  Mom thought she was going on Thursday night or Friday but then my sister told her otherwise.  So now she’s just putzing around doing odds and ends trying to work through the aches of every 8 minutes. 

On the Ari front… I lovvvvve the camera.  We were successful in getting the word out on Angelman Syndrome Awareness Day 07!  WETM TV in Elmira NY did a fun story on AS at my daycare, starting… ME!  I showed the world that great big smile and all my artistic talents.  Momma did a little interview (between contractions).  Not too bad.  The interview lady, miss Ana was very nice and soooo patient. (I wanted to run the interview but momma said I couldn’t).  Miss Sara and Miss Kim were so helpful too.  It’s not every day that we get to kick the kids out of class to have the TV crew there.  I also have to thank Miss Colleen for letting them come and film us.  It was way fun and if you want to see it go to this link:

http://www.wetmtv.com/mediacenter/local.aspx if that doesn’t work go to www.wetmtv.com and then choose videos and then choose "steuben county toddler suffers from rare disorder" video.  Ok I wouldn’t say I’m suffering… cuz I live the glamorous life… but I think it makes for a better headline to get the word out.  Thanks WETM you guys rock!

We didn’t make it to the physical walk a thon cuz mom has been having contractions 8 min apart for ummmm three days now… nope mom says it’s four.  So we had to stay in Corning, but we did get to walk to hokey pokey for ice cream and we got the footage on the TV.  We were thinking of everyone and sending warm weather vibes to you.  We are still taking donations on our website if you want to contribute! 

I think that’s enough excitement for now.  Pretty soon mom will have two blogs to keep up with, maybe I should share mine with my sister for a while, that way mom can get some sleep… nah I will have to share enough with her to start with… ha!

Be nice, give hugs, and smile at strangers… love- Arianna

Angelman Syndrome Awareness Day is May 19th

3 weeks and counting til my little sister gets here.  I’m making momma type fast so she doesn’t forget what to write as she has been forgetting things a lot lately.  First thing’s first we have to give a big ole THANK YOU to Daddy.  He has been housewife extraordinaire lately doing dishes, laundry, the yard work, and the cooking.  Thanks Dad! 

Update on the WALK A THON… if you haven’t had a chance to pitch in go to www.firstgiving.com/ariannasawesomeadventure and join us!  We get the final verdict next Wednesday on whether or not we can go to Philly.  Wouldn’t want our newest star to make an early appearance in an unplanned city- although that would totally show up my superstardom for some time. 

SUPER DUPER SPECIAL shout out to our Legislative Reps: Jim Bacalles and George Winner for getting the State Legislature to pass our annual Angelman Syndrome Awareness Day for Saturday May 19^th, 2007.  It was passed 1 year –to the day- of my diagnosis.  Momma sent out a press release to the local news orgs, we’ll see if anyone bites, if not we’ll spread the word ourselves!

Mother’s day is this weekend, and we need to take a moment to thank all those special folks in our lives that do the Mom thing. These people can be male or female as sometimes “Mom” is filled in by surrogates who do the job just as well!  How are we going to celebrate… well we thought us girls would go out and color the world with pansies!  AKA we’re going flower shopping with Nana then we get to garden… I’m all about the mud and water.  Can you say big ole mess!

I’m totally enjoying this super weather.  I have gotten to play in my bouncy house (thanks Bubbe and Grandpa!) with dad and it is super cool.  I have also had a chance to play in the back yard where I like to run off on momma (since she can’t catch me) and hide behind the shed.  The front porch is great too for socializing with the neighbors and laughing at all the people who walk by.

Grandpa Bob opened his pool last weekend, but I guess it was too cold to get in.  Says who?  It’s never too cold for a dip!  But alas I will have to wait till momma says it’s ok.  I just can’t wait to show off all the new tricks Miss Lisa (my swim teacher) has shown me.  Did I mention there are way cute lifeguards at the pool who just love to say hi to me?

Finally I have to give a hand to Miss Maggie Hickey, who threw the golden temper tantrum last week.  Alas, good Mag I have taught you well! You go girl!

So who knows when I’ll get to post again, since mom is crazy.  Feel free to write and be sure to know that I will send the mother of all press releases out via the blog when the newest Rock Star of the family gets here.  Happy Spring, Happy Mother’s Day, but most of all spread the news about ANGELMAN SYNDROME AWARENESS DAY!

Peace- Arianna E

1 Month Away- Angelman Awareness Day

Hi Blog Fans… Angelman Awareness Day is 1 month away!  Which also means that the walk a thon is also 1 month away.  We’re busy raising money and friends to walk all over the US with us.  Momma’s docs are becoming more weary of letting her travel to Philly but she’s not giving up hope.  With my luck my baby sister will probably show up on AS Awareness Day and we can have an even bigger party! Woo Hoo!

Bubbe and Grandpa are coming to visit this weekend (good thing it’s warming up).  I hope they like wagon rides.  That’s all I want to do lately is go on a wagon ride.  I’m tired of being cooped up in the house (I think my dog is too). 

We had a great auxiliary team meeting this morning to talk about my new partner in crime in preschool (AKA my Aide).  Everyone was way on board to collaborate to find me someone who is cool.  I can’t wait to find out who the lucky winner is.  OF course I’ll have to break her (or him… hmmm a him that would be fun!) in. 

We have our big team meeting tomorrow, all about me!  What else could be more fun (except for this Sanjaya dude getting kicked off Idol… I mean I can sing better than that guy- for once Simon is right.)

On the subject of TV… no more Football drama (AKA fridaynightlights) until next season, so we move on to Notes from the Underbelly (sounds like Ameilia and I could write for this show), it’s only 30 minutes long so we have to be punctual in our bed routine (no dilly dallying).

Before I sign off I need to give a big Arianna’s Awesome Adventure hug to those at VA Tech.  I don’t understand what is going on, but I do feel the vibes from the evening news & that they all need a dose of massive sunshine.   So in the spirit of spreading sunshine please take a moment to pass on a smile to a stranger and a friend.  Everyone can always use it! 

The Groundhog Is A Liar!

The groundhog is a big fat liar!  I’m supposed to be going outside to play in my wagon and on the swing set, but with the pending snow storm we’re still having to keep around the big ole snow suit and shovels.  Don’t get me wrong, I’m always up for a snowball fight, but I’d rather be swimming!

Spring sprang last December then winter set in.  I firmly believe that summer is around the corner and spring is just a figment of mother nature’s imagination. 

On the home front, momma’s belly is getting rounder each day.  I still don’t understand why I can’t climb up her belly to give her kisses.  There’s all kinds of new toys around the house, my pack and play is up in the living room but I’m not allowed in it.  Neither is the cat, but we have  got a plan to take it over when mom isn’t looking. 

I’ve been getting up pretty early lately.  I think that 2am and 3am are quite appropriate breakfast times, but mom says otherwise.  I can only keep myself occupied in my bed for about 30 minutes before I get bored.  Mom seems pretty tired, but here’s a secret (she’s up anyway). Shhhh!

The walk a thon progress is coming along, we’ve got some friends committed in Nashville (thank you Christi!), Denver, OC, Jacksonville, Dallas, Philly, and DC.  If you still want to participate it’s not too late just go to www.firstgiving.com/ariannasawesomeadventure you can join the team or donate!

A big shout out to Julia who turns 3 this weekend!  She’s having a gymnastics’s party I can’t wait!  License to be a monkey whoo hoo!

All for now… there’s still some mud to be seen out doors that must be played with before it is covered with snow.  Sunshine day to you all!- Luv- Arianna

March came in like a Lion and I’m as cute as a Lamb!

So I know it’s been a while since mom has let me on the computer but I’ve been sick so I was banished from spreading germs on the internet.  Since I’ve turned the big THREE a lot has happened, some good, some scary, some completely amazing.

I sat through my first two dance concerts.  This stuff is really cool.  These people don’t talk but they can tell a wicked cool story.  Kinda like me.  The one troupe moved around like they were walking on the moon, and the other were belly dancers! They were so nice after the performances (which I sat through and thoroughly enjoyed).  All the kids were running up to get autographs and I was the cool kid with the picture!  My cousin Cooper made it into the paper, she’s as famous as me now!  Way to go girlfriend.

Now comes the scary part… I had my first seizure experience in February just after the first dance concert I saw (not related).  This lead to a trip to Rochester and the most miserable doctor’s visit of my life.  Get this, they expected me to let them hold me down, attach some nasty smelling glue to my head with wires that I couldn’t touch, and then… FALL ASLEEP.  Um, ok, you can get where this is going.  Not gonna happen, nope, never.  I was soooo miffed… this was all just to get a measurement of my noggin and how my brain was working.  All they had to do was ask and I could have told them my brain is just fine, it just misfires sometimes and I go to Jupiter for a little while (mom doesn’t think that is funny).  I guess the doc go what she needed cuz we didn’t and WON’T be doing that again for a very long time.  Mom and dad came out with some bruises (sorry for the biting) and tears, but I think they got over it.

I was able to visit with my cousins later that day at Aunt Merle & Uncle Larry’s house.  That was way fun.  I even got a wicked long bath to take the junk out of my hair (1 whole bottle of suds too!). Unfortunately I ended coming down with this awful stomach bug which layed me up for 5 days.  As if mom and dad needed any more torture.  We then chased that illness with a sinus infection and strep throat (which I so graciously passed on to mom and dad). 

In the mean time we had two huge snow storms that put lots of cold white snow on the ground.  I loved to step in it and play with the snowballs.  (It has since melted once Mr. Sunshine came out last week).

It’s now a month later and I have made yet another trip to Rochester to see my Developmental Paed and the staff at the Kirsch Center.  That was a rockin trip, cuz this time I could walk, so I decided to let myself out of the exam room and visit the other kids and nurses there.  Dad followed me around while mom talked to the Doc.  Dr. Sulkes is so funny, he lets me play in his bag and makes all kinds of funny noises.

After our visit, dad went to work and me and mom took a road trip on the Thruway to Ithaca to visit Maggie, Ella, and their momma Erin.  On the way I thought it would be fun to throw a poop party in the back seat (momma was not impressed).  So we had to stop and clean up.  When we finally got to see Mag and El I had a great time.  Mag and I made our way to the top of the stairs (hehehe) which our mom’s clearly had told us not to do – but we figured if we did it together we could pass it off as cute. El is getting way big, she can eat apples all by herself!

So now we are looking forward to going to Albany to watch governor Spitzer sign the Angelman Awareness Day proclamation (Thanks Mr. Bacalles and Mr. Winner for sponsoring this).  After that we go to Philly for the walk a thon (have you checked out our fundraiser page yet http://www.firstgiving.com/ariannasawesomeadventure ?  Are you in a walk a thon city?  If so you should totally go and walk with all my friends.  We’ll even send you an Arianna’s Awesome Adventure button to wear!

Here’s my amazing for the month-  Now that I am a big girl swimmer at my lessons I swim all by myself for several laps and I can swim to the ball and hang on to the ball to float! 

One last thing before I sign off.  Our neighbor Austin (you know the QB of the football team- GO WEST HIGH) is doing a paper on ME!  Well actually it’s on Angelman Syndrome, but I’m his inspiration.  He came over yesterday to learn about AS and about our Adventure.  So I have to send a shout out to his English teacher Mr. Hamilton-  hey dude give him an A+++++ because Austin Rocks!

Don’t forget to checkout the walk a thon site!  - Happy Spring to you all!  Remember to hug someone today and smile!

Old Man Winter

I don’t think the groundhog consulted Mother Nature when he decided not to see his shadow this year.  Wow this winter storm has really done a job on our town.  Everything is white and is screaming for some color.  I thought it would be fun to take my fingerpaints to the snow, but somehow I couldn’t convince mom to go outside.  It’s not like it’s -10 with the wind chill (ok maybe it is, but to me that feels like 50)

Well, my birthday party was a big hit.  All my friends came and played with me and we had cake and ice cream.  My family was there too.  We went through so much pizza and cake!  Loads of fun.  I didn’t stay up to watch the super bowl cuz I was too tired from partying! 

Our official announcement is here!  The walk a thon 2007 fundraising is under way.  Check us out at http://www.firstgiving.com/ariannasawesomeadventure .  Depending on how mama is feeling we hope to be in Philadelphia this year for the walk.  We decided that it wasn’t wise to travel to Canada 2 weeks prior to the new kid’s arrival, just in case she decides to come early.

We’ve raised the bar for this year.  Here’s the challenge.  If you live in any of the following cities and would like to walk, we’d love you to create an Awesome Adventure Axillary Team!

THREE 3 Tres Trio

Happy Birthday to Me Hay Hay Hay HAY!

Mmmmm three is soooo goood!  This morning I had french toast with cupcake frosting.  Momma was frosting my cupcakes for our class party and I insisted on testing the frosting for breakfast.  She gave in at the cute pouty face I administered!  Three is so liberating.  I’m learning to walk fast, almost run.  Not so sure what mom thinks about that, but I find it very accommodating!  We’re in for a big weekend.  Swimming tomorrow, and a big ole birthday bash on super bowl Sunday.  How can you beat it, cake, ice cream, friends, family, and football boys!

A good thing about being born on groundhogs day is that I get to share my birthday with a cute little rodent who calls all the shots with mother nature.  He’s pretty awesome in my book, good job Phil!

We’re getting started to launch our ASF 2007 Walk A Thon campaign, officially to be announced on Sunday!  We’re not sure if we actually get to go to the walk this year, it all depends on my baby sister and when she decides to move in.  Keep tuned to the blog for info.  Mom will blast an email from me on Sunday to let you know the details.

The playground project will be back up and running this spring.  I don’t think we were finalists in the contest, which kinda bums me out, but we won’t get discouraged.  I have full confidence that the Corning Painted Post Community will support us 110%.  Momma’s got a lot of organizing to do (papers and people) then we can start the fund raising campaign for that too!

Other cool things on the home front… I am on record as a preschooler today and will be moving up to the preschool room this fall.  I have the best little talking board that helps me ask for things that I want.  Right now I’m just learning how it works (mom too), but I’ll have it mastered in no time, and then you won’t be able to keep me quiet! 

If you are in town on Sunday and would like to stop by for some food fun and of course a thousand toddlers… come by the house we’ll make room for more!  Peace!- A

Happy New Year 07

Happy New Year 2007!

With the New Year comes new adventures… most importantly this big sister is going to have a little sister!  It’s a girl, or so says this funny picture that mom showed me.  I didn’t see pigtails and a dress, but momma swears it’s a little girl.  Another dose of womanhood in the Manning household.  2007 also brought me to Florida to see Bubbe and Grampa Manning.  We went to the zoo and saw these really cool otters swimming around in a pool with a slide and all kinds of balls and water. I totally wanted to climb in but momma said no L We also went to visit Anna and Alex in their new home, boy was that way cool… they have their very own pool in the house but it was too late for me to take a dip.  Although I was denied the water experience at Anna’s and at the zoo I did get to go in Bubbe’s pool a lot.  That was way fun!

So from southern Florida we went up to Orlando where I got my first dose of the Mickey chaos!  Wow, there were so many people there to say hi to!  Everyone was so nice and wanted to give me high fives!  We took the Ferryboat to the Island of the Magic Kingdom.  We went to the Country Bear Jamboree, there were the giganto bears that sang to me and one even came down from the sky… wow!  We had lunch at the Palace Café where I got to meet the Mayor of Main Street and the Fire Chief!  They didn’t serve mac and cheese but I really liked the cookies! 

By the time we got on and off It’s a Small World, I didn’t see that we were in a boat on water… all this water that I can’t play in- what’s with that?  I think I’ve graduated from wanting to be a princess to wanting to be Tinker Bell.  She’s much more sassy and gets this great wand!  Besides instead of 1 boy, she has lots of them following her around!  That’s what I’m talking about J 

I zonked out at dusk so Dad and Nana decided to go on Space Mountain.  About 10 minutes after they got in line I woke up and was HUNGRY… so I made my peace known until momma got me a huge hot fudge sundae.  After that we went to the arcade and watched the big kids on “Dance Dance” it’s this really cool video game where they dance to awesome Disney songs.  Way fun. 

The best part of the Disney day was the parade.  I got to sit in the special section with all my friends who needed a little extra help too.  We traded stories about shoes and AFO’s and doctors.  Everyone was so nice.  I made Nana hang on to me the whole parade so I could get up close and personal with the characters. 

Mom was really tired out by the end of the day.  Maybe I should have shared my stroller with her.  We have lots of pictures to upload to the site I can’t wait to share them with you.

I was very excited to return home, via a stop at Auntie Jeannie’s house where we saw her and Cathy (thanks girls for the lunch and company!).  I have been catching up on my toys and friends at school.  I even worked for my OT – yeah really… I put play dough in a cup 4 times yesterday.  I must be happy to be home!  Happy New Year to you all.  Resolve to have 07 be the best adventure yet!  Love, Peace, and Cows- Arianna

Mooooooo

TODAY I MAKE HISTORY!  Ladies and Gentleman I have said my first word, granted I may not repeat it ever again, who knows, but I said it- not once- not twice- but three times.  As I sat in my lesson with my special instruction teacher, we were playing with this cow puzzle that makes the moooo sound when I put the cow piece in place.  I said Moo several times when this happened.  Boy was momma excited to hear this when she picked me up.  What I was really trying to say was, can we get a cow?  I’m holding out for the whole farm, but the parents say I have to settle for a baby brother or sister.  Hpfh… we’ll see if I repeat my big word.  Maybe I’ll try another, but in the mean time mommy is celebrating.  I think I get good props for this holiday gift to mom and dad.

Happy Hanukamus!

So for ya’all that don’t know… we celebrate 2 gift giving holidays in our house… Hanukah and Christmas.  Mom and Dad said it’s important to know the cultures, traditions, and beliefs of both sides of our family as well as those of others.  This helps spread peace and tolerance, which will create harmony in the world.  Hey I’m all for spreading smiles and giggles but I have to add my own angelic anarchy and chaos into the mix.

So as we look forward to our first holiday on Friday evening when I officially get to help light the first candle on the Menorah I give a big shout out to all my Jewish friends.  My gift to you on the first day of Hanukah is love.  Love is the best gift you can give, and when it’s given with a smile, even better.  Mom says if we could bottle my smile and sell it we could solve world hunger.

In the spirit of Festivus I have to say I am soooo looking forward to Maggie’s visit on Friday.  Water table at the science center here we come!  We’re gonna close the place down!  Mag is coming down with her new sis Ella.  We’re gonna show her the ropes, but not before we get to tear through the new Angel 2007 calendars!  If you haven’t ordered yours yet, totally do it man!  They are way cool!  Just go to Maggie’s site (the link is on this page) and order away.  The proceeds go to ASF, which delivers all kinds of grants to study Angelman Syndrome.  Besides how can you pass up dozens of cute kids with big ole smiles! You need a calendar for 07 so why not?

Just in time for New Year’s mom and dad should know if I’m gonna have a baby sister or brother… Cool

T minus 18 days til we take off for Florida!  MMMMM sunshine and WATER!  This weird cold/lukewarm/freezing/lukewarm/cold weather is driving me nuts.  Mom can’t figure out what to dress me in.  At least in Florida I can run around in my birthday suit and go to the pool. That’s the way it should be.  Maybe when we get back it’ll snow!  We didn’t get much snow last year.  I think I got to use my sled 1 time (which was rockin cool).

So before I sign off… I have to give a GET WELL shout out to Austin our cutie neighbor.  We hope you will be up and running very soon!  If not I can come over and keep you company and we can watch Friday Night Lights and eat pizza :)  Also a welcome home to his sister Brittani, she’s the coolest!

Happy Holidays everyone- don’t forget to put up your mistletoe!- Arianna