Family Update May 2009
Thank you to everyone who supported us at this year’s ASF Walk A Thon on Angelman Syndrome Awareness Day May 16, 2009. I walked a whole mile that day, while sister walked a 1/4 mile picking dandilions! We had a great time and a huge team. You can check out the pics at www.ariannasawesomeadventure.org
Lots of changes are happening in our family next month! I am graduating from preschool (June 12). Mia is turning 2 (May 31). And Mommy is going back to school. She has decided to be a Nurse so she can help other kids who are different live up to their potential. She also wants to help encourage their families to support them and learn all they can about their children so they can grow up to be anything they want. Isn’t that so cool! She has also taken up running!
Mommy said that she wanted to challenge herself, like I challenge myself every day. We are kind of doing this together, as I am working on my IEP goals, she is working on her running goals. I’m learning to go up and down the stairs by myself and she is learning to run a 1/2 marathon. She runs her first 5k next weekend!
This summer we are going to spend lots of time doing some really fun things with mom, swimming for me and gymnastics for Mia. We are going to Florida as a family for the 2009 Angelman Syndrome Conference (momma’s doing the photos/slideshow!). We are also going to visit Bubbe and Grampa as well as the twins and uncle Joshy and uncle David.
We can’t leave out Manningfest 09 (aka the Arianna Manning rocks star pool event). We’re all meeting up in Rochacha for a weekend of food and water!
Kindergarten starts in the fall so I’m also going to do summer school to make sure I’m all set. They are even letting me into my new school early to check it out! I can’t wait.
I wasn’t kidding when I said there was a lot going on. But that gives us a reason to blog right! Well, we hope that your summer is going to be full of adventures and we encourage you to tune in to ours. We promise they will be exciting!
Peace, love, and water!
Arianna
Walk A Thon 2009
The 2009 Angelman Syndrome Walk A Thon is upon us. We’ll be walking on May 16th this year… Buffalo NY is one of the many locations. Find out more information at www.angelman.org or checkout My fundraising page at:
http://www.angelman.org/AriannasAwesomeAdventure/
We will also be holding some other fundraisers this summer to help us raise money to go to the Angelman Syndrome Conference in Orlando this July. We hope you will help support our efforts by donating time, money, and/or kind words to our efforts.
We’re off to Boston in a couple weeks to show off all my new talents. I can’t wait to see their faces.
Gotta run! - A
HSM3 out on DVD and in MY LIVINGROOM
Ok, so I haven’t stopped bouncing since 5pm on Tuesday night when I got to watch High School Musical 3 on my television in the livingroom. IT ROCKS! It’s like having a movie screening in my house every day! Twice a day (sometimes three times) actually. Not sure if mom and dad are sick of it yet, but Mia and I are certainly rocking out all the time. Thanks Bumpa for getting it for me for my birthday. This is the best movie ever! The singing, the dancing, the BOYS, and the bling!
So I highly recommend you go out and get the dvd for yourself.
I need to give a shout out to many of our angel friends who are in the hospital or battling illness. It seems like a lot right now, and we want you to know we are all pulling for speedy recoveries so you can get back to having FUN and making people smile! Get well soon everyone (especially Kara, Colin, Lauren, Kassy, &Karicia-Mia). If I missed you it doesn’t mean we’re not thinking of you… it just means that mommy is old.
So I’m putting mom on super over drive with meetings and lots of planning for AS Awareness Day and the Conference. Check back to my website www.ariannasawesomeadventure.org or here at the blog for our fundraising info for this year! We’re also planning a rummage and bake sale too (later in May/June).
Stay warm… spring is just around the corner. Oh and Happy Mardis Gras!- A
Groundhog’s Day 2009 AKA Birthday part 5
Today is groundhog’s day. The day the cute little furry guy comes out and tells us it’s gonna snow for six more weeks. Today is my favorite day, because I love me some snow and cold weather. It’s also MY 5th BIRTHDAY! Of course in true Perkins-Manning fashion my birthday actually is a week long event which started on Saturday. All my friends came to the play place and we had a High School Musical Party! It was so much fun. Dad led us in the limbo line, we had face painting, cake, and presents. Mom was so proud of me sitting with all my friends eating cake and having a good time, I was a total big girl. Later that night we played with my new video game system and played in my new HSM stage (it’s really a secret dressing room tent with a sound system- it rocks). Mom was so tired she lost her voice, so she couldn’t holler at Mia and me as we chased each other in and out of the tent.
Saturday was also the day our friend Kassy got her quilt that all our angel friends helped mommy and me make. Kassy is a super trooper in every sense. We hope that the lovey we sent her will remind her that we are truly “all in this together” and that she’ll never be alone during scary times. We have a few angel families that are spending a lot of time in the hospital right now and we want them to know that this birthday we are wishing for them to get well. We hope that you will join us in making them feel better!
Today at school we will have cupcakes and sing Happy Birthday to me! Tonight is Meatloaf night at uncle Michael’s and topped off with Birthday Ice Cream Cones!
Tonight I’m going to my swimming lessons, the perfect end to an awesome birthday. Mom and I are going for pancakes tomorrow morning and who knows what the day will bring… maybe some snow.
So I am signing off with some giggles and a new note to tell you about my emerging vocabulary at the dinner table “Ball, Mom, and More” have decided to reappear quite often. Not sure why, I just feel like using these words right now. Mom loves it and Nana cries every time she hears me talk. But hey it’s February. The month of love and growth, so I figured it was about time to step up. MMMMooooohhhre later!
Ari
Inaugeration 2009: A note to my daughters.
Stephanie, Arianna’s mom, here. I thought I would post on my own behalf today. A message to both my girls, on such an inspirational day. Today I am thankful for the encouragement that is brought forth by the symbolism of todays events. History will be made in so many ways, and we are blessed to be able to live in such a great country. Words that come to mind today are Pride, Collaboration, Equality, Hope, Uplifted, and Worthy. I hope that this feeling will resonate for many years to come. I pray that the new leader of our country will be able to bring us safely through these tough times. When you look back and read these words I hope that the feelings of today have been carried through to the future. I hope the opportunities we fight for now, will be everyday occurances- the norm. When you speak of history I hope that the true change, today’s events bring, will rank among the greatest moments in life. Believe, trust, grow, talk, help, reach, push, challenge, empathize, dream, and above all love.
It’s so cold, it’s snowing in my room!
OMG!It is so cold outside, so cold I don’t even want to go outside, so cold I actually want the heat on in my room.But maybe if I asked mom to keep the heat off in my room it would snow!Hmmm, I’ll have to think about that one.We are well underway with prepping for the big trip to kindergarden.I think it’s like going on a really big trip out of the country, because mom has been going to a lot of meetings.I kind of like where I am but it’s exciting to think that I’ll have a new place to rule!I just hope they have a playground, a big red ball, and a water fountain!Of course it must have a totally stocked fridge complete with juice, peanut butter, and ice cream!Hopefully my cousins and I get to hang out together in the same school, that would rock.
We’re also gearing up for my FIFTH birthday.That’s right I’m super big now.And guess what the theme is, that’s right- High School Musical!All my friends are invited, and we’re gonna have an awesome time!
I’ll make sure mom posts some pictures.Till then- stay warm! - A
From Turkey to Resolutions Happy New Year 09
I know I know, it’s been a long time.So there are lots of updates.Since my last report I’ve been through a whirlwind of adventures.I’ll start with the beginning of the holidays.Just prior to Turkey day my silly brain decided to scare the heck out of the rents and cause a couple of crazy seizures… (Note- I am fine now).I took a wicked trip to the ER all clad in my ACDC t-shirt.Mom and I had a slumber party at the hospital.I think I ate EVERYTHING that existed in the pediatric unit that night.All that shaking takes a toll on the appetite!Again, I’m FINE!The awesome docs and nurses got things under control and were super cool to me.Mom kept me occupied with the High School Musical trailers on her phone and the nurses even gave me a Barbie and a homemade pillowcase!I can’t lie, it was scary for me.I still don’t like to talk about it.
When it rains it pours, because that night mom and dad had to have us all say goodbye to kitty Puddle.He got pretty sick and couldn’t get better so we thought that it was his time to go and stay in heaven. Scout and I miss him a whole lot but we are there for each other.
Happier notes Thanksgiving came and went with lots of yummy food.The next week, mom and dad skipped town to Chicago for a gala for Angelman Syndrome (thanks to the Foundation for Angelman Syndrome Therapeutics, Paula Evans, and Colin Farrell for making this possible).They met all kinds of cool people (families, scientists, sponsors).Everyone was awesome.They even got to see Richard Marx.They told me they got to meet so many other families and share stories and support.That’s cool.Mia and I behaved ourselves for Grampa and Gramma and Aunt Lindsay who stayed with us so Mom and Dad could go on their adventure.They have pictures posted on our website www.ariannasawesomeadventure.orgMom wanted me to thank Miss Alayna, Miss Dee, and Miss Alicia for their show donations from Jersey Boys and Wicked (Chicago Casts).I think the rents came back relaxed, so Mia and I fixed that just right by messing up the house.
The next week was Bubbe’s week to visit, and NO I did not break her this time!We had so much fun together, chilling out, shopping, and watching videos (I don’t think she likes Hairspray and HSM as much as Mia and I do.)It snowed a whopping 12 inches the day Bubbe arrived, right on cue.I think she liked the look, but not the temp.
It snowed like that the day after she left too.And the day after that.I didn’t think it would ever stop snowing.At least I got out of school for a bit.
So Christmas and Hanukkah rolls around and we were loaded up with all kinds of cool stuff.We added a new musical to our rep, Mamma Mia!Can I just say, ABBA where have you been all my life?This is the most awesomest musical ever! (Until HSM3 comes out on DVD)We had so much fun opening our presents and playing with our cousins.I had a new found freedom on Christmas Eve as I was able to play with my cousins without mom lingering over me every second.I did manage to dig into the salad bowl a time or two, but no harm no foul.
Ah the stomach bug crept up on us as our final gift of the holidays.Yep it wouldn’t be winter break without us taking 4 days to sterilize the house.I think mom thought she was actually going to have all of break to herself, yeah right!
So the day after Christmas brought us 54 degrees and all the snow melted.But it didn’t take mother nature long to dump another 4 inches on New Year’s Eve!Mom and dad had a couple of hours to themselves tonight to ring in the new year while the baby sis and I stayed home with Gramma Linda.In true angel fashion I stayed up to ring in the New Year, but unlike my counterparts, I fell asleep shortly after the ball dropped!
Today is New Year’s day 2009.We are lounging around watching parades, movies and blogging.My resolution this year is to make even more people smile and to be nicer to my sister.I’m thankful for all of my family, friends, helpers, teachers, therapists, and especially for the doctors who are helping make me the best I can be.Our whole family hopes that each of you have a successful, healthy, happy, and giggly 2009.With love and peace- Arianna Manning
Go Philly! It’s snowing.
So baseball season is wrapping up.Both mom and dad’s teams failed to impress me this season so I have moved on to HS football (much cuter boys and a little more accessible).My cutie neighbor Austin is a senior this year and he is totally rocking up the football field.We’re going to root him on this weekend!Go Vikings!I’m talking tailgating, green and white gear, war paint, and of course the band!I’ve been watching the drum line practice all month.Boy you think they’d be able to keep up with my beat by now, but of course I march to the beat of my own drum!
Since we last met, I’ve started school again and added some major excitement to the regimen. My talkie computer has arrived and the team is experiementing before letting me get to it. I’m getting very impatient, it’s so cool and it’s pink. I can’t wait to share my thoughts will all my friends.
It’s snowing here today, you heard me right, it’s snowing.
I got to see HSM3 in the theatre last week with Cooper, it was awesome (except for the adults who sat right in front of me so I couldn’t see- nothing a little hair pull couldn’t fix though). I’m gonna go again this weeking with the gang from school. Mom is jealous since she has not been to a movie is 4 years but now I’m draggin her again…oh well.
Uncle DooDah (Bobby) turns 31 this week. Big shout out to you… I hope that means we are having cake this weekend with lots of food. Make sure you tell mom to bake cake.
Mom is gonna post some new pics on the website so you should stop by and check it out.
Don’t forget to vote next Tuesday - Peace out- Ari
08-08-08
Whooooa that was an awesome trip to Chez Maggie! We had such a rocking good time with Maggie and Ella at their Canadian abode. Although the oasis wasn’t completed yet, we had plenty of other things to keep us busy, like High School Musical. Maggie doesn’t love Sharpay as much as I do (I think she has the hots for Zac) but her and Ella definitely got into it with us. Maggie is the coolest ever, she totally gets me. From hair pulling to binky stealing, and bouncy house to lots of great food we just partied! We have a ton of pictures to post (cmon mom get with it, before summer is over PLEEEEZE!).
So since we were in Canada we didn’t have an opportunity to watch the opening ceremonies of the Olympics live, but we have it on TiVo and low and behold… we were watching it and Bella’s dad’s song came on (Time of My Life). How cool was that! She’s from China so it was super duper special.
We’re out for summer break right now so I am sans therapists, but mom says that we have some big ole meeting to plan to get me a voice in class. Something about my own computer that I can make talk. WOW that is soooo cool… i wonder if it will look like Momma’s iphone? I hope so, I totally love messing around with that thing!
My cousin Aiden is leaving this weekend to go back to Chicago, I will totally miss him. He is wicked cool and knows how to build super awesome forts. We’re going to have one last romp in the back yard and bouncy house before he goes. He starts school next week, can you believe it… at least I have two weeks left to go (but only mom is counting).
Next week Bubbe gets to finally come and visit. I think I should take her school shopping with me to get some cool new duds. Maybe some more Hannah Montana shirts and a HSM lunchbox.
Did mom tell you I’m a big on the potty girl? I have gone at least 1 x a day on the potty and once we get the schedule down right it will be easier. I’m even telling momma when I have to go. Yeah, I’m pretty cool huh?
Before I sign off… I have to say a special thank you to my teacher Janelle who will be gone this fall. She just had a cute little baby boy and she needs to stay home and take care of him and his big sister. Thats a big job. I gave her some grief last year, but it was fun and she helped me learn a lot. So thanks Miss Janelle for sticking with me and making me do my work.
So check it out… have a great rest of the summer. Look at our website and pictures… TTYL my BFFs! - Arianna
Summer Lovin!
So the month of June held some pretty high society events, as the Duchess Miss Amelia Eve Manning turned 1. We had a big bash in the back yard with lots of friends, food, and cake. Mia even got her own cake, but she did share with me since I’m the coolest! June marked the end of school (for most kids) but just a little break for me. I kept the peace in class while my cohorts raised the chaos (I can’t do it all by myself you know). It’s bike season so my ride is all souped up to go and I’m riding in style.
July is a huge month for partying at the Manning compound. We started off with the independence celebration of fireworks (which of course the Duchess slept through) complete with hokey pokey ice cream and snacks (which mommy ran out of!) Then it was off to the race track to hang with the Indy Car drivers. I got to test drive the Ethanol Car (it was awesome!). Then nana took Mia and me for the day so mom and dad could party it up for their anniversary. Mia and I gave nana a run for her money. I think she needed a vacation by the time mom and dad got home!
I have to give a big belated HAPPY BIRTHDAY shout out to my cuz’ns AJ & JJ who celebrated the big ONE. Mia and I sent them our favorite toy (water table baby!) We hope they cause as much havoc as we do with ours!
Happy birthday to my Mommy too! She said that for her birthday she wanted to sleep in, but she didn’t say that she wanted to sleep in alone!
Mom took me to get my newest bionic legs last week. These new and improved robotic devices make me run super fast (I tried em out in Target!) and they should help me climb better too!
We also spent the day at Aunt Jean’s pool and had a picnic with the rest of the Perkins family. I was soooo loving the water and the company. Mia even floated around the pool a bit. Of course in truest Ari fashion I had to pull a half nighter and got momma up at 3am this morning. Besides I wanted to spend some time with her before she had to jet to the big NYC for an overnight work thing. So tonight it’s just me, the duchess, and daddy! Can you say PAR - TAY! I’m sure Nana will be over to make sure that Mia and I don’t tear the cupboards off the walls or flood the 2nd floor.
We went to the Styx Concert on Friday and it was way cool. They played my favorite song, come sail away, and mom, nana, Ariel, & Miss Lisa and I rocked out all night. I even made some friends with cute boys!
I’m also on the big High School Musical kick. If you haven’t seen it, you should come over and visit. I can promise either HSM1 or 2 will be on while you are there, since that is the only thing I will let anyone watch. Who can pass up the coolest gang in the world. I just love Sharpay and Zac is dreamy!
So in the coming weeks we have lots planned, our cousin Aiden is out for a visit, Bubbe is coming to see us (Grampa came a week ago and made great fun with balloons and silly games), and then the closer of the summer is the big ole trip to Canada to spend the weekend at Chez Maggie!
We have to give a happy day shout out to our newly wedded and favorite PT- Miss Jess, we can’t wait to see pictures. Also Miss Janell had a little baby boy, congrats to her and family!
26 days til school starts!
Mom said she’d post some photos on the blog as well as the website so make sure you check em out. Till next time, if you can’t be with the one you love honey, love the one you’re with! Rock on baby! - A