School rocks!

Well as you know I am now going to public school just like my big sister Tori. And it rocks! Daddy is so proud of me as today Mrs. Maloney sent home a note telling him that during story time while she was reading to our class about a penguin family, when she mentioned the daddy penguin I began saying "Da-Da" too! Hey, what can I say. When you mention my main man daddy, I simply cannot keep to myself. I soooooo love my daddy!

It appears my teacher and aide are quite taken by my ability to comprehend what they are saying and asking of me. I get it, I just do not quite know how to tell them so. But that is why I am there....so they can help me find my voice. Whether it be sign language, PECs or a communication device I so need to be able to express myself to others. Its hard having thoughts inside that I cannot get across to daddy, momma Niki, my sisters and of course grandma and papa. Not to mention everyone else.

My classmates seem to be receptive to my joining them. It feels good to be welcomed and to have others around me talking so much. I hope to pick up a few words along the way now. I know that is somewhat of a big dream, but as well all know nothing is out of reach if we work towards it and believe hard enough. And Lord knows I have plenty of believers around me. :-)

Well its is past my bedtime and I do have school tomorrow so I am going to say "goodnight." Angel hugs and sloppy kisses to all. xoxo

First week at public school....thought I would share a brief update.

Well I am officially in inclusion classes at Lodi Elementary. Yep! You are reading this correctly.

What a wonderful group of people at this school. Mrs. Maloney is my teacher in pre-K, Heather is my personal aide (to keep me out of mischief) and Mrs. Licursi my resource room teacher. And here is the best part of it all. Besides the fact that they are all amazed at my receptive skills and that I can and will follow directives, Mrs. Licursi knows about ABA. Is that not the coolest thing? Finally someone besides the listserv parents of Angels who has heard of ABA and been to several seminars on it. Who knows....I may just get to experience this program after all as Ohio never seems to have studies for me available to participate in a ABA trial nearby.

Anyway, back to how my week went thus far.... If you have watched the weather Ohio like many other states has had a cold weather week. Freezing temps that none of us wanted or like to go out in so school was closed a couple of days already. I did however go M-T & W. So short week there and not a great deal to report. I can share with you that I have many steps to go up and down at school and the teachers were totally taken by my ability to do them by myself. Grandma chuckled and said; "I told you we have been practicing at my home by Emma going up and down the basement steps with me in front or behind her to stop a fall if necessary. But she never faltered once." (Thank goodness we did practice at grandma's, as it made me look good at the new school). LOL

Daddy is hoping for a bit more daily correspondence from school as we begin my second week. It is all so new that we have to come up with a form of "what I did today" sheet so daddy is more privy to my accomplishments or studies each day. I am sure that can be arranged soon. Well, gonna close for now as I am going to be going to grandma and papa's today so daddy can have a wee break from Tori and I. I think he is going out to dinner and a movie. Ahhh..he deserves it doesn't he? Besides, personally I am NOT a movie watcher. Too busy for that dull sitting and watching one of those!!!

Angel kisses and hugs to all.......xo

Sharing a few of my favorite pictures from New Year's at Grandma's.

Here are just a few pictures of me New Year's Eve and New Year's Day. You will love Mikayla and my venture of doing cut-out cookies. I liked eating the icing far more than putting it on the cookies we made. Grandma laughed at Mikayla for not watching where my hands were going...if you snooze you lose when it comes to my speedy movements. I am good..... LOL

Lots to catch up on...it has been awhile since I blogged. :-)

Well for starters let me wish everyone a Happy New Year! Can you believe its 2009? My how 2008 has flown by the past few months. It seems like since grandma & papa moved into their new house and moved daddy, Tori & I into their other house no one has had time for anything! Geesh! I had no idea how busy our lives would become but that is precisely what has happened. So....my hope is for grandma and I to get back to blogging at least once a week like we use to so everyone knows what is going on in the life of me; Miss Emma. :-)

I have so much to share with you so I will first tell you that we had a wonderful holiday season. Santa was very good to both Tori and me this year. And God has been looking out for me health-wise as I have been healthier than in the past winters for some reason. Grandma and daddy think it is the change in homes. Our other house was drafty and this one is not, and we no longer have hardwood floors but carpeting throughout so no cool floors for me to tend with. Maybe this is why or maybe it is simply because I am getting a wee bit older? Who knows? All I can say is that I AM the healthiest (knock on wood) I have ever been for the winter to be upon us. And my family is so thankful for this little miracle.

I have grown a bit these past 6 months and my looks are changing rapidly. Here is what I looked like last year. Many will remember this as my blog page picture if you followed my blog at all.

Now take a moment and look at my blog page picture! See how I am changing? Grandma and daddy say I am getting prettier by each given day. I just laugh as my whole family is quite prejudice when it comes to me. (Hee-hee) And I know this to be true! But I will agree with them that I am changing a great deal. Getting taller, slimmer and definitely looking older than last year.

So now for the big news; I am changing schools! Yes, you are reading this correctly so don't go anywhere till you get the low down. I am going to public school. The same elementary school as my big sister Tori. Is that not the coolest thing you ever heard? Me! Miss Emma in a regular school with typical kids all around me. Kids to talk to and play with and learn beside. My family is so excited they are bursting at the seams over this. And I too am getting pretty excited. Can you just imagine me having lots of other kids to talk to me? I have been popping out with words here and there for some time now, but I don't seem to do it regular enough. Grandma says that seems to be the norm for kids with Angelman Syndrome. We speak a word one day and then forget to say it again for days, weeks and sometime months on end. Is that not strange? Not that I don't believe her, but makes me wonder why I cannot simply say these words over and over again like others do. Oh well, maybe I will figure this all out at the new school and start using more words and signs. I sure hope so.

It is not easy for others to get me when I want something as I still cannot get most to understand what I am hinting for. My family gets it and is good at meeting my needs and desires but I wish the rest of my world could. It would make life so much more enjoyable if people understood my body language or followed my moves more and could see what I want when I want things. I get frustrated like most angels and will throw things to get their attention. At home I am not permitted to do such! I get put in "time-outs" for throwing things. And let me tell you time-outs are not the greatest thing for a busy little girl to have to do. I don't know about other kids but I hate sitting in a chair for too long. I like to be busy, busy, busy. Hee-hee.

Anyway on with the new school stuff. Grandma emailed Maddie's mommy (Emilie) and she has sent a few links to Maddie's videos in which she does her homework and school participation stuff. My new teachers and therapists are going to take a look at them and see that the possibilities for me are endless. Angels are not textbook articles that one reads, but rather each of us are individuals with many capabilities to be nurtured and fed. My grandma believes in her heart that I can do much of what Maddie does given the guidance and support she has in her life. So........that is our hope with inclusion school. Please pray for me and wish me luck over the next few months.

We know many will find my personality unique, challenging yet delightful and energetic. But will they see beyond the obvious traits of an angel and realize that "I GET IT and I GET THINGS far more than most realize? Oh how my family is praying they do. I can and do do so many wonderful yet typical things at home that the school does not get to see. I pick up my own toys and put them away, I sit at the big table and eat my dinner like everyone else. I understand what you say to me and follow directions quite well. Honestly. I may not speak but I am listening and willing to learn if only others are as willing to teach and work with me as my family does at home.

I have come so far in the past year that no one in my family ever thought was possible. My daddy and grandma had the faith in me to push me to be the best that I could and here I am today willing and ready to push myself further. That is what this inclusion education hopefully will offer me. New challenges and milestones to be gained is the game plan for me. And I cannot wait to spread my angel wings and fly..........

Oh yeah...best of all. The Resource teacher at the new school knew what ABA was!!! Can you believe this? The first time my family has met or heard anyone outside of the Angelman Families that actually knew what we were talking about. Apparently she has been to seminars and such for ABA. So I may finally get a chance to participate in ABA like so many other fellow angels have been. Wouldn't that be something for Miss Emma here in Ohio to get a chance to participate in an ABA program like many are doing in the research studies right now? I may not have been able to travel to get into one of the current programs but I may just get lucky enough to get it right here at Lodi Elementary School. Woo Hoo!!!! I will definitely let you know if I do. Promise.

Well for now I am going to close as grandma and I have to get things emailed to the new school for the teachers and therapists to review. Lots to share with them before I start next week. Oh yeah, my first day at the new school is January 12, 2009. So, the New Year is ringing in with excitement all around Miss Emma's world. Wish me well and keep me in your prayers.

I will be in touch next week to let you know how my first week goes. Angel hugs and sloppy kisses to all.

Hmmmm...Grandma moved and trying to play catch up? Not going to be easy.

So much has happened since July. Grandma & Papa moved into their new house and daddy, Tori and I moved into ours. :-)

I now have about 1.5 acres of yard to roam. Woo hoo! And got a playhouse and little Tykes swing set, slide and tree house in the deal. Thanks Grandma and Papa!!!! Tori and I love our backyard.

Well, we all know school has so Tori and I are both in a new district now. Tori loves her new school and is doing super. I, on the other hand am not having a positive experience this year. Daddy and Grandma as so worried. So we are going to have another IEP meeting to iron things out. I will let you know how this goes once we get through the meeting. Do wish me luck.

I have spoken 2 new words over the past week; "Up & baby." How cool is this? I thought everyone would faint when I spoke these out loud. Hee Hee. Just can't underestimate an angel can they? I have been pretty healthy since the growth spurt and seizure episode in July. My neuro really made a huge adjustment to my Keppra and once I adjusted to it all has been great.

With school and the weather change the sniffles are coming and going. But I am handling them well. I like sleeping in cool weather. :-) My new bedroom is awesome. I even got a dutch door compliments of great grandpa. He came over to the house and installed it before grandma moved out so it would be ready for my arrival. Gotta love my family don't you? They are always thinking of me and my safety. Since it is grandma's house that we are living in she says we can do what we need to to keep me safe and out of harms way. And that is precisely what they have done.

Well, it is a short post but hopefully we are back on track now and I can post regularly again. Sweet angel kisses to all.

Summer School and swimming are 2 of my favorite things....

Hi everybody!

I have been a busy girl this summer. Swimming, summer school, Corn Festival and picnics and shopping a bit to name just a few of the many things I have been up to. Oh yeah, bouncing and jumping on my trampoline too! That is definitely been a hoot. I have even started standing up on it to bounce, but only when by myself as Tori is far better at this and if she and I are on at the same time I cannot keep up with her. LOL

I have made some really neat craft projects at school for daddy and my family. Been to a petting zoo and lots of playground time. Oh how I love the sand and water table. Woo-hoo! My aide Kathy Lee is with me as always and sees to it that I have lots of fun without getting hurt. I so love Kathy Lee. And I know she loves me too.

Did grandma tell you that my PT has paid off? Not quite the way they had all hoped as it added a bit of worry to the day, but I definitely hit a new milestone. I can open the storm door and walk out of my house all by myself and reopen the door and walk back in. I only have 1 step to climb and I hold on to the door jam to accomplish this little trick. Personally, I thought it was a great trick but I could see daddy, grandma, Halle and Mikayla (they are my caregivers while daddy is working) do NOT appear to like the newest trick. Hmmm. Daddy even changed the storm door lock on me! What is that all about? Learn a trick and get a lock change? Grown ups are hard to figure out sometimes.

Tori, grandma and I took up a wee bit of exercising over the summer. We stretch our arms up to the sky and then bend over and grab our toes. It is too funny seeing grandma doing this but don't let her know I said that. (Hee-hee) They keep telling me how good I am at this and how wonderful that I do not lose my balance at all when I come back up to stand and stretch again. It only took them showing me 2 times before I was doing this stretching exercise with them. Daddy thinks its cute, but let me tell you exercising is hard work! Whew!

I have learned so many things as of late that I can do myself. Putting my dirty clothes down the laundry shoot, tossing paper in the trashcan, picking up toys and on yes, the red time-out chair. That tends to be a regular thing for me. Why is it Angels are not allowed to play with TV buttons? If you don't want us to play with them, why put so many there for me to see???

Tori and I have been playing "my little pony's" a great deal this summer. And grandma even angel-proofed a few for me. So...my pony's have no mane or tails. I guess I wasn't suppose to chew on the hair while playing with them. Heaven knows I like to chew on almost anything so I now have a papi to chew on instead. It is clear to me now that somethings are to be chewed and other things are not to be chewed. Boy it is not easy figuring out what adults are thinking! They are a tough group to follow. LOL

Nik and Savannah got me the neatest little pool for my birthday and sent grandma a picture of me playing in it. I get home from summer school and go swimming every single day. I even have little tan lines for the very first time ever. Who knew I could tan like my big sister? She has always tanned easily during the summer and me I never played much outside before now. And now we find out I can tan too. I use a sunblock though....50 SPF but that is because I am fair skinned as opposed to Tori. She has a darker complexion then I do and tends to tan fast like daddy.

Well lots to do and people to see....I hope this finds everyone healthy and having a great summer. Oh yeah, before I forget. I have a few angel friends that need special prayers right now. Megan, Kara and Lilianna (my angel buddy Triniti's) baby sister has Leighs Disease. They have all been in the hospital fighting illness's or seizure control. Please take a moment to pray for them tonight. I so want them all to get to feeling better so they can enjoy the summer like the rest of us.

Oh yeah, I cannot forget to mention Jordyn my classmate and caregivers daughter. She has been doing really well. She is moving her arms about now and we have such hopes of her continuing to progress. I look forward to the day she and I get to play outside with each other. They say there is always hope and miracles to happen. So I am shooting for the stars when it comes to Jordyn. :-)

If I am a bit behind in posting, just know I am swimming, sunning and having the time of my life....

My 5th Birthday! What a day...and another milestone has finally emerged. I am starting to sign!!!!

Sunday, July 13th was my 5th birthday. My how time flies when your an angel having fun day in and day out.

We had a wee party with my favorite people. Daddy, Tori, Niki, Savannah, Halle, Jordyn, Mikayla, Aunt Nicki and Abigail, Papa and Grandma and of course me! :-) Such lovely gifts and love were shared by all.

I will post the link to my montage/video so you too can share my day, but the best is yet to be told. I am now signing "more" and "bath." Can you believe it? Poor Grandma was beginning to think the Signing Time CD's were not catching my attention so I figured I had better let her know that I don't just dance and boogy to the music but actually do pay some attention to what Rachel, Leah and Alex are doing too! :-) I thought grandma was going to cry last night when I signed "bath" to her. Geesh! I had to sign it three times before she realized I was telling her I wanted to take my tubby!!! I think she was in shock or something like that. The look on her face was priceless.

Oh, and wait till Miss Rita at school finds out my latest little trick. It is NOT making a hit with Daddy and those who take care of me but I thought I was doing something pretty darn grown-up. After all the practice in PT I can now open the front door and walk out on my own down the stoop. Yep! And I can also open the door and walk right back into the house on my own. Can you figure out why Daddy, Grandma and Halle my caregiver don't seem near as thrilled about this milestone as I am? I guess they think I am getting too big for my pants now. Hee-hee!

My birthday presents are really cool. Lots of clothes, a Radial Flyer Horse and a swimming pool just to name a few. And just to let you all know, those pink hightop sneakers grandma got me. She was right! I cannot take them off like I use to. They actually stay on my feet till daddy or someone else helps me take them off. So...no more coming off the school bus barefooted or out of the car with daddy shoes and socks still lying in the car seat. Guess I will have to find another form of amusement when I am in a vehicle. LOL

I have one more week of Summer Classes and my the fun we have had. Field trips and art class have been awesome. I have made some of the neatest projects for daddy. We are working on my socialization with peers and I tend to sit off on my own and play as a rule. It appears I need to play more with others rather than on my own. Grown-ups! Can't live with them....can't live without them. They are always wanting to teach me something new! Geesh!

Well, off for now. Its another lovely day in Ohio and you know angels. We don't want to miss out on anything!!! Especially the sunshine and a chance to play in my new pool. By the way...Grandma wants you to pay attention to the end of my birthday video. Apparently I was a wee bit saddened by my daddy holding Savannah while I was sitting in my swing after the party. No one knew it till grandma downloaded the camera but now they do. My face told it all.

Oh yeah, I almost forgot! I wanted to send special love and thanks to all my angel families who took a moment out of their busy day to email Birthday Wishes to me. Grandma is putting every single one in my scrapbook so that one day I can look back on this birthday and read each and every one of them! Thank you all..... xoxo


Miss Emma's 5th Birthday..