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..

Catching up...lots to share!

First off Grandma went in search of shoes (high tops) that were girly, but yet ones I would "not" take off constantly. She finally found them and they are way too cute! I will debut them on Monday as this is my first day of Summer School classes. Yes, I am going to Summer School! We are going to focus on my socialization skills so that I will play more with my peers as opposed to on my own. If daddy & grandma read my schedule correctly, I am going to be having a lot of fun this month. :-)

I am saying a few things as of late; da-da, na-na & goo grl. I am also exercising by stretching my hands above my head then bending over to touch my toes! And best of all I don't lose my balance while touching my toes. Grandma taught me this and it is way too much fun. I do it with Tori, grandma and Mikayla and we all laugh and giggle while doing this. Who ever knew exercising could be so much fun? I sure didn't.

This month I took on a few new chores around the house. I can now toss trash in our trash can when asked to, put my dirty clothes down the laundry shoot and I get to help with dishes too. Of course doing dishes is the MOST fun of all. Water and bubbles.....I love them both! I have to admit while learning the trash and laundry shoot chores I have put a few extra items in both places. But then what did anyone expect? All part of the learning game I say. Daddy finds an occasional toy in the basement laundry basket while sorting laundry to wash and just brings it back to Tori and I laughing and shaking his head at me. Why is it he just knows that I dropped it down the shoot? Better yet how does he and Tori know I threw away my cup or a particular toy? Are they both psychic? Hmmmm....

Learning to potty is not the easiest thing right now. I am much more interested in going outside to play. So interested that I can now open the front storm door and walk out all by myself. This is the one trick my daddy and grandparents ARE NOT overly happy about. But my PT therapist would be thrilled to see me open that door and step down that little step all by myself without assistance. Miss Rita would be grinning if she had seen me in action. It appears this is one milestone my family did not appreciate my mastering. New locks proved that to be true! Ugh!

July is my month to celebrate. First July 4th, then comes my 5th birthday on July 13th, then this is the month of my first year anniversary of being diagnosed as an Angel. It was 1 year ago this month that I was diagnosed with clinical AS. I was not confirmed UBE3a until December of 2007. So I celebrate both months! July is also the month of grandma, Uncle Brian and Aunt Nicki birthday's too! What a month for our family. :-)

Well for now I will let you go. I will fill you in on Summer School and all the fun things I learn soon. I hope you like my shoes. Grandma will let you know if I actually keep them on or not. Me, I will let you know if I find it frustrating that I can no longer take my shoes and socks off in the car or on the school bus. LOL

Father's Day with my daddy...

For Father's Day daddy went golfing then took us to a picnic with lots of friends and a swimming pool. Tori was a bit scared but not me! I was as happy as any angel could be floating about in the water. Whoa....how I love the water!

Here is a short montage of our water fun! Enjoy!


Father's Day with my Daddy

My world is full of miracles..one day at a time.

Meeting my first Angel Friends

You know,just when we think life is good enough it seems to just get even better. My grandma (who I now call na-na-na)met some wonderful families of angels like me a couple months ago. Yep! I am not alone in Ohio. There are more angels than we knew about.

Anyway, we were invited to a picnic where I met other angels like "me" for the first time face to face. How cool is that? Well my na-na-na will tell you it was the greatest night of her life. When we met we all knew we were similar and connected instantly. Hugging and oh yes, a few sloppy kisses passed amongst us. It was way too cool to describe. I met Mitch, Caleb & Jordan and we all played in the sandbox together until the rain came. Then off to eat and play inside due to the rain.

What an awesome time was had by all. The grown ups got to talk and my daddy finally saw he is not alone in raising me. He actually has other parents now to turn to and talk to when ever he is challenged by the many changes yet to come for me.

Grandma was pretty busy with being around my new angel friends so she did not do much in the way of capturing lots of pictures. Anyone that knows her knows that IS NOT the norm for her. But meeting other angels took her breath away and she simply was more in tune to enjoying them then snapping shots for later. And its okay. Leslie, Mitch's mom is going to share some she took with us soon. :-)

Make sure you pay attention to me riding the horse imatator! Jordan's mom Jan is the lovely woman assisting me. Do I look like a pro or what? I am not sure which one of us was laughing harder, Jan or me????

I am doing lots of new things. Vocalizing more, expressing my wants more vividly and enjoying the summer break from school. I will be going to summer classes in July. We are focusing on my ability to interact more with other children rather than play alone such as I do. My family is already working on this with me so all should great in summer classes.

I love playing outside and ask often to go out there. But as we all know I have to pick and choose the times that the heat is not too high because of my intolerance to it. I never seem to drink enough fluids on my own to stay hydrated so this creates problems for me. But again. we are working on this too. Na-na-na is teaching me to like water! Never been one of my favorite things to drink but it sure does hydrate my body much faster than juices and milk. And when I appear really over-heated she lets me play with frozen vegetable bags out of daddy's freezer. LOL Hey, she told daddy whatever cools my body temperature down and works she is using and playing with bags of frozen veggies does help a lot.

I will be spending the day with my daddy for Father's Day and we are celebrating it with his some of his friends. A picnic, swimming and lot of love and laughter to be had for all. And guess what? I loved the swimming pool. Go figure!!!!

Grandma wanted everyone to know how well I am doing at taking directions from everyone. I seem to listen far more and actually do things asked of me. Still getting put in time out for pushing, hitting and messing with daddy's TV. But hey, no kid is perfect now and that is okay with me. I am an adventurer and they all know this well. :-) So I now have a red chair just for time-outs. LOL And did you know the whining and shedding a couple of tears does not get you out any sooner? I tried them all and I still had to do my time! Ugh!

I guess what it all boils down to is I am going to have to learn what I can and cannot do or pay the consequences and be placed to sit if I do not. So....trust me I am not a sitter but a go getter.....So I am working hard on behaving and knowing what I am permitted to touch as well as what I am NOT.

Until the next time love to all.

Miss Emma meets Elmo face to face...OH MY! :-)

Hi everybody! Been a busy week for me and my big sister Tori. We are coming to the end of our school year so lots of fun with our field day activities. We both have been sharing our school events with each other nightly over dinner. Too cool....

It has been 3 weeks now since I started going potty at school and I have been successful every single day! How is that for a beginner? Don't misunderstand as I am still having an occasional lazy moment at home. Hey what can I say? When I get busy playing I really do not want to take time out to sit on the potty so sometimes I just don't cooperate by sitting long enough. Then you guessed, I have an accident. Daddy and grandma seem to think this too will pass as I really like being dry more than walking around in a wet or dirty diaper.

Tori and I have been playing a great deal outside. We both love the outdoors and my trampoline and swing set. And we love when daddy takes us for rides in my big red wagon. I sure wish the winters were shorter in Ohio. It is so neat to have sunny days and between you and I am not a big winter baby. Don't get me wrong, I do so love eating snow but it is simply too cold for me to play outside for any length of time. I love Spring and Fall best. They are my seasons. Summer is nice but I don't do so well in the heat as many already know. So I spend a great deal of time in the air conditioning of the house!

Oh yeah the topic of the week with my family.... As everyone knows I am a huge Elmo fan. Well guess what? I like him better on TV!!! Grandma took Tori and I to meet him recently and I was totally shocked to see how big he was! Six feet tall? What is up with that???? My buddy Elmo as I know him is NOT that big! I am still trying to come to terms with the size of Elmo. So while I am working on this little dilemma grandma is including a video to show my not so great first time meeting with the character of my dreams. I sure hope you all enjoy it as Tori and grandma are still talking about the entire encounter. It was not at all what they anticipated and definitely not what I remember my Elmo looking like. :-)

Grandma is coming over tomorrow so who knows what will happen this weekend? You just gotta love the things she gets Tori and me into. It is never a dull moment for us. Well off to take my tubby and get ready for bed. Sweet dreams to all my family and friends.

I hope you enjoy the silly video more than I enjoyed meeting Elmo face to face. What a shocker!




Emma meets Elmo Montage 6/1/08

So much to share....

So much to share with you.......I am not sure where to begin.

I am going potty at school these days! Yep! You are reading it correctly. I have been going potty everyday for 2 whole weeks at school. I still have an occasional accident at home, but for the most part I am doing really good. How is that for a surprise?

I am also drinking from straw cups regularly now and always eat with a fork and spoon and scoop plate. My how I have grown up this year. I have mastered all of my IEP goals this year at school and Miss Cathy is already working with me on my colors which I was going to start next Fall. She thinks I am pretty smart. I think she and grandma have been talking...LOL Both of them seem to think I can do just about anything if they work with me. Funny, but I think they are right on this one. I have learned so much this past 9 months. More than anyone ever imagined I would. I guess it is because they believe in me. You gotta love that don't you think? I know I do!

I have had good health overall, if you skip past the seizures starting in January and the many sniffles I caught on and off this winter. No flu bugs came my way so that is really cool when you think about all those that did catch that yucky flu. My appetite has been awesome and I continue to eat lots of veggies, fruit and yogurt. My favorite drinks are strawberry milk and pear juice. And once in awhile I like apple juice too. I am wearing pulls ups instead of diapers and I have grown about 2 inches and gained a few pounds since last Fall. Did I mention for the most part I sleep all through the night? Yes, I know that is not the norm for an angel but then again my family claims I am all but the norm when it comes to being me! :-) They are a bit on the prejudice side of things but hey, they love me to death. They all say I am contagious! LOL Not sure what that means, but I think it is a good thing.

I have been out playing on my trampoline when the weather has been nice. How I do love to be outside. Swinging and trying to run about. I like this time of year. Its not too hot and its not too cold. Kind of perfect weather for an angel, don't you think?

Did I mention daddy took Tori and I to the hair salon again? Yep! We both got our hair done last weekend. I even got my bangs "feathered" a bit. That was grandma's idea. Not sure what it means but she thought it would be better for me. All I know is everyone thinks my new haircut is cute! So...what the heck? I like cute...LOL

Well guess I have shared all that I can think of for this week. Till next time have a great Memorial Day and enjoy spending time with your loved ones!

Angel hugs and sloppy kisses to all,

Weekend at my house..

Miss Emma on Trampoline

Great weekend at my house! Papa and I played on the trampoline! There were times I got to laughing and giggling so hard at Papa that I could not stay on my feet. He can be so funny at times.

This was our pamper the girls weekend too! Daddy took Tori and I to the salon for haircuts. I got my bangs and top of my hair textured. Whatever that means? It was one of grandma's ideas! All I know is Daddy and Papa said I looked really cute when they were finished. I love hearing that folks. But then most girls do. LOL

Well not much time for sharing things but Grandma says we will get everyone caught up soon. We still have to share how our IEP meeting went and what Miss Cathy has planned for me next year. :-)

Angel hugs to all,

My big sister Tori's school year and how she has grown up..

Tori's Kindergarten year 2007-08

Happy Mother's Day..

Hi everybody! We had a tea party today at school and Miss Cathy invited Grandma to come with me. What a wonderful time for all. It was a wonderful way to honor Mothers Day for all the "mommy's" or in my case "grandma."



I want to wish all the Angel Mommy's and Grandmothers a very Happy Mother's Day from me to you. xoxoxoxo

Still chatting...

Grandma was so disappointed that I wasn't calling her nana yet...so this morning when Daddy took us to pick up Tori I said na-na twice! She heard it the first time and said she did not just say nana did she? Everyone nodded yes! Then I sat there loving on her and said it a second time. Ha Ha! Now she is feeling pretty darn special with this said and who knows what will come next? I said ma-ma too this weekend to a family friend. I know she is not my ma-ma, but she sure does lots of mommy things for me. And she said she would rather spend 24 hours with me than with any other person! She says I am all about having fun and such a easy one to be around.


The girls want to do this or that or want something all the time. Me I am content being me! Besides I will dance till the stars come in if someone will let me. I am definately a dancing queen. I love music and shaking my booty about. And I can twirl too. My versions of play are much less complicated than the other girls.



And of course one of my favorite buddys is still Elmo. He loves to dance too! :-)

I'm back...Let's see if I can catch you up on things!

Well its been a long couple of weeks. First we had to prepare for my IEP meeting and that was not easy. Much to do to get ready for next school year. The IEP meeting went well but long. I went too but no one planned on me being there for 3 hours plus! Grandma and daddy said I don't have to go next year if I don't want to. :-)

It was decided that I will keep my 1:1 aide for various reasons; safety being the main reason, followed by my need to be overseen as I am still too friendly with others. I just cannot seem to get it that others don't want to be kissed and hugged by an angel all the time! I thought everybody liked my hugs and kisses, but I guess not. :-(

Ms. Cathy is my pre-K teacher and she had such positive things to say about my progress this year. She even told everyone that I understand what they are saying to me and will follow directions. How is that for cool? Poor grandma thought only she, daddy and papa got that part of me. Well.....turns out others do too. So my teacher is going to work on teaching me my colors and shapes this upcoming school year. And I am going to extended school in July for 4 weeks. My goal for the summer school is to focus on interaction with my peers. I guess its not good for me to not know how to play with other children and they want to teach me a little bit about how to do just that. Between you and me, I bet I try kissing and hugging them. After all that is what we angels do best. We give unconditional love to all we meet along life's journey. And we do it so well.

I will be spending more time next year with non-disabled peers at school. Something my daddy and grandma really wanted for me. What they did not know is Ms. Cathy was already borrowing kids from another class to spend time with me. LOL That will teach them not to ask me things!
Oh yeah, I am going to start focusing more on my communication skills too. I use a big mac button but it sounds like we may be advancing me towards a ACC device. You know I got a really nice Talk & Speak sent to me by Emily & Tyler. And my school has the board maker program so they can adapt it to specific pictures that interest me day to day. Just one more neat thing happening in 2008-09 school year. (I told you I was going to be busy).

This week was my 2 month neurology appointment. All was well with me and no seizures since January, so I don't have to go back for 6 whole months! How is that for good news? And other than a wee bit of the sniffles I have been quite healthy. Grandma is just sure it is all the supplements she has me taking. I just thinks its good fortune and the fact that I love to eat fruit and veggies like I do. If its green I like it. Broccoli, spinach, green beans and peas. They are all high on my list of yummy foods.

Did I mention that I am a carb junkie too? Well I am! I love pancakes, waffles, bread/rolls, oatmeal, pasta (no red sauces) and dairy. Yoplait kids yogurt (banana) is one of my daily staples. I also like when grandma and daddy take vanilla yogurt and add chopped fruit. Mmmm ...

OH MY GOODNESS! I almost forgot to tell you. Not only have I mastered using a fork and spoon to eat, I am now using straw cups. How is that for progress? Geesh, the things I have learned in the past few months. I know I should be exhausted with all the work I have put into these milestones but I'm not. I love learning new things. I really do. I think I take after my big sister Tori, as she is really really smart and doing awesome in school. Her teacher sends home such wonderful notes about her. I have to try to stay with her on learning cause we sisters are after all very competitive little females. LOL

Here is my new cup from Grandma in celebration of my latest success!

My biggest and best new milestone is calling my daddy by name. I have it down pat now...Da da rolls off my tongue so easily now and my daddy just lights up when I call him by name. (I do know how to win his heart).

Well for now I have to go as grandma is really busy helping out a friend of hers. She is extremely ill from what I overheard and grandma and a few close friends have been taking turns staying with her. As a matter of fact Tori went to keep papa company tonight so he would not be all by himself. That's my big sister for you! She keeps papa company and gets a wee break from her little sisters hugs and kisses. But she knows I will save her bunches of kisses for tomorrow. I always do.......

Angel hugs and sloppy kisses to all,

IEP week is over and all went well...

IEP week has come and gone and all is well. Grandma and daddy worried themselves for nothing. My teacher Miss Cathy gets me too! She sees that I understand what everyone is saying to me and that I do respond to directives. How cool is that? I will post later this week and fill everyone in on things...grandma and I have a full week ahead of us right now so this has to be short and sweet. (Like me).

My IEP Map for Success for 2008-09 (draft)

Hi Everybody! Grandma prepared a "map for success" powerpoint to share with my school during my upcoming IEP meeting. Below is a link that should take you there to see it.

Wish us luck...as with so many others I too have dreams for the best education available. :-)

http://docs.google.com/Presentation?id=dhb3tp3x_0c9c3g3h5

Playing catch up on my posting... :-)

Well if it is not enough for me to be such a busy little angel, now grandma too is running about helping care for a dear friend of hers. I think she and I have that in common, like to be busy and running about. :-)

Spring break was nice, but I was ready to go back to school. Lots for me to learn as of yet and I don't want to fall behind on things that I have accomplished. My IEP meeting is coming up and I am working with grandma on sharing the things I like to do, what motivates me and a few of my body signals and what the mean when you see them. Grandma is hoping it will assist in others understanding me easier if they know what certain actions mean like when I want a drink or am hungry. I tend to get dehydrated and my cheeks get really pink if I am not consuming enough fluids. Most don't know that my body temp is out of whack so we are hoping to share that with them at school.

I caught a cold again at the end of Spring break. Geesh! I guess I cannot complain as that has been about the worse for me this winter unlike others. It must be all those supplements I am taking. Daddy and grandma give me lots of healthy things to make certain I stay healthy. And since I love veggies and fruits so much we all think that my eating is assisting in keeping illnesses away. So everyone do eat your fruit and veggies like me! They are very good for you, honest. :-)

I just outgrew my shoes again and we had a difficult time finding shoes narrow enough for my long slender feet. Finally grandma bought a pair and had her friend alter the straps a bit so that I could wear them. It seems everything that she found that was fairly narrow had velcro straps and they all tend to be too stretchy for me. So her friend cut the straps shorter and sewed them back together for me. Pretty cool huh?

Oh yeah, I got my report care too and have mastered almost ALL my goals for this year. Yippee! That means new stuff is coming for me to learn. How cool is this? My reports seem to get better and better all the time like my big sisters. I think we are competing with one another now. LOL

Well I have to get ready to go to Aunt J's house. She is our daycare provider and is really a sweetheart. She does lots of things with Tori and I when we are there. We ever have tea parties! Aunt Sherry hooked us up with a wonderful care giver and we are so fortunate to have her.

Have an angel of a day!

Busy week for me....Spring Break and what a hoot!

Well it was Spring Break for this angel and Aunt J my new daycare provider found me to be quite a treat. :-) My sister showed me how to topple the dining chairs over and Aunt J being of the artistic nature quickly found a way to tie them together with ribbon so I could not continue to topple them! I just love that woman and so does my family. She IS a Godsend to me and Tori. And we all thank Sherrie for finding her for us!

Aunt J has been reading up on Angelman Syndrome so she understands me better as we go along our journey together day to day. My grandma is so thrilled that she has fallen in love with me and sees that though I may be a bit of a challenge at times, I AM A LOVING LITTLE GIRL WITH SO MUCH MORE TO ME. That is the hardest point for my family to get across to others, but Aunt J has managed to see it rather quickly and we like that.

I "get it" more than most realize. And though I do not speak like others do, I do my best to let you know what I want or need. You simply have to pay more attention to my actions. Remember the old saying; "Actions speak louder than words." Well, I AM speaking just through my actions! Please take a few extra seconds to watch me and you will see that I too have wants and needs. That I AM communicating constantly to you, I just express them differently because I cannot vocalize yet. Key word is yet~my grandma is convinced one day I will speak. May not be perfectly but I will speak simple words and get my desires across to others. I love that so many have faith in me. :-)

Aunt J's hubby, Uncle D is already planning our summer time with them when school is out. Aunt J told grandma and daddy that he is planning to fence a section of the yard for us to play in. Grandma was delighted of course to hear that as they have a pond that we all know will draw me to it. After all water is my game and Miss Emma is my name! LOL

Tori was challenging Auntie J a bit in the beginning of our change to a new daycare provider. But it did not last long as daddy, papa and of course grandma sat her down and explained that it would not be tolerated to misbehave or argue with Auntie J. So, needless to say they are nipping that it the bud accordingly and it appears she is catching on fast. The remainder of the week she was a good girl and that pleased all of us greatly. Aunt J even curls her hair for school. How cool is that to have our own stylist???

Oh, I have to share something really neat with you. Grandma and Papa went to dinner Saturday with several parents of Angels in our area! Yes, your reading this correctly. Finally we have found a few angels to introduce daddy, Tori and I too. How cool is this????? They were lovely people and quite joyful to be around as grandma and papa told us. They too see hope for all of us in various ways and Andrea and Matt have created a foundation that will one day build a special home for us to live in when grow up. Can you beleive that? To know for the first time that I too will have a place of my own to live in when I gradudate from school. (And I WILL graduate from school one day). Daddy and grandma will see to this.

My family clearly wants my education to be all that it can be in my situation and intend to fight for such. After all, no child left behind is what the law says. I too have a right to a proper education that meets my individual needs just like my big sister Tori does. Only my needs are a bit more unique than the average child. And that is okay. WE all have our own individual weeknesses and with those we also have our special areas of strength. So we have to include and share both sides of the spectrum specific to me and open up our IEP this year to address all of them more agressively. Especially my communicating with others.

Not going to be an easy road, but one we beleive that can be done with those educating me at this time. Miss Cathy would like to keep me one more year with her so we are leaning towards this if the IEP is directed at offering more challenges than in the past to help me prosper more as a 5 year old and that is what I will be this summer. And personally five years old is an interesting time to move forward with new challenges and goals beneficial to my needs. To be able to communicate and thrive in the real world. Wish us luck as we should be getting our IEP appointment soon.

So as you can see........what a week we had in Miss Emma's world. We even got sent home early from visiting our mother as she called daddy and said she wasn't feeling well and wanted to cut the visit short. Some days it is like riding a yo-yo with our visitation time. We go, we want to go home and now she wanted to cut it early. I hope this does not go on like this forever. Its no fun being tossed about and me I like my routine too much to be jolted about like a doll. I must have a routine to thrive and daddy and I know this to be the best thing for me. I am a creature of habit and consistency. I like 'repeatition" in my daily life and have proven to all who work with me and live with me that it is my best attribute. I am thriving these days and healthier than ever before because I finally have consistency in my home, my school and now in my daycare Aunt J.

Life is good and I hope yours is also. Miss Emma signing out. Big hugs to all the familes of angels tonight.

P.S. My bus aide had a great term for indentifying my personality. She said I am "contagious" and grandma told everyone that says it all....Contagious. I kinda like being contagious to others. Opens a whole new world of freinds for me. LOL

This weeks update. :-)

This past weekend my big sister Tori finally got to have her birthday sleepover with our cousin Olivia. It was suppose to happen last weekend but we got hit with a big snow storm and it had to be canceled. But for those that live in Ohio, we all know if you stick around long enough the weather will change . LOL And it did.

The best part of the canceling of the sleep over birthday celebration was Tori got not 1 but 2 birthday cakes! Woo hoo! I just found out that I like Dairy Queens ice cream cakes! I turned in a bit early the night of the sleep over as I came down with the change of weather cold and stuffy nose thing. Boy do I hate having to have my nose wiped so much. :-( Daddy rubs me down with cherry Vick's vapor rub and off I went to sleep. I guess they had a pizza party without me? Hmmm. That is okay, I don't like pizza anyway!

My cold is on the downside now and I am starting to feel better but I think I passed it on to Tori. Oops! Kinda hard to keep it to myself when I am all about hugs and kisses. Sorry sis......but it comes with the territory of sloppy kisses and angel hugs. Well off to bed for me as I have school tomorrow and need my rest.

Angel hugs and sloppy kisses to all,

Congratulations Miss Jordie and family. :-)

Congrats to my classmate Jordie. She has finally been given a diagnosis and she is more rare than we angels. She has CFD (Cerebral folate deficiency) which is an extremely rare disorder and her parents are celebrating finally having a name to her syndrome. Strange as it may sound to some we know what it was like not knowing for 4 years precisely what my diagnosis was and how thrilled my family was to finally know. And then to find out that I was an angel was just too cool as it led us to the Angelman Forum.

So please, all my angel friends and family celebrate with Halle, Bill and Jordie's family as we do tonight. :-) And please take a look at just how beautiful my classmate Jordie is..her mommy let me share her picture with all of you. Take a look to the right column of my blog page and meet Miss Jordyn. :-)

Look what my teacher Miss Cathy sent Grandma!

Hi everybody! If its not enough for my grandma to get all excited about my recent milestones, check out the pictures below. My Pre-K teacher Miss Cathy is taking pictures of me at school too! She snapped a few shots of me while I was busy at our classroom work station. Don't I look studious? LOL

I am putting a 4-piece puzzle together in the first picture, then picking up pennies and placing them IN the honey bear bank. Miss Cathy put a towel down for me so the pennies would not slide around on the table. But that is me picking them up and placing them into the bank slot!

Before starting the Clonidine and Omega 3 (Nordic strawberry soft gels) I would just throw the puzzle pieces, never even thought about actually putting the puzzle together. Now look at me go! Grandma says she isn't sure which supplement is helping me most but I can assure you she has no intentions of ceasing either of them at this point. And truly, the Omega 3 gel caps are kinda fun to eat. The "pop" in my mouth when I bite down on them and I giggle when I hear the sound inside me mouth. :-)

I've been practicing my fine motor skills... :-)

Well once again grandma thinks I have mastered the world. Who am I to tell her differently? She brought me erasable markers Saturday and a little book to write in thinking I might draw for her. Silly grandma, I was far more interested in the marker itself.

Adults want us to do one thing and as usual we angels want to do our own thing!

Well, lo and behold....though I wasn't overly interested in drawing for her she got the biggest charge out of my ability to place the cap back on the marker! I am not sure why..... but hey I am going to let her enjoy the moment. It takes so little to make my grandma happy and let face it, happy is what I am all about! :-)
Reminder: these are erasable makers and I AM being monitored at all times.

Who would think eating yogurt would be such a big deal? Only my grandma.....

Hi Everyone! Grandma wanted to show all of you how well I am doing eating on my own. I am not sure what the big deal is but she certainly is proud so bear with her on this. She really does work hard with me so when I do something well she likes to video it to show all our family and friends.

If you listen carefully you will hear me say "goo grl" for good girl. That is what grandma always calls me so I guess I thought I should praise myself this time as I was eating my yoplait yogurt with such finesse'. Did I mention I am only eating yoplait kids now since we found out it has DHA added and grandma is all about Omega softgels with DHA and thought the extra would just be additional "brain food." The things my grandma tries to assist me in reaching new milestones. :-)

Off to a good week at school...

Grandma got a lovely email for Miss Cathy, my teacher. It appears she told her how I am putting a puzzle together correctly, placing pennies in a bank all by myself and learning to stack cubes! The email has grandma flying high tonight!

I even drank from a straw 3 times last week! Look out world, Miss Emma is on the move in more ways than you can imagine. And more yet to follow. :-)

What a great week...

Hi everyone! I do not know where to begin reminiscing of my week first. I guess I will start with Tuesday's visit to the neurologist. We chose to see one affiliated with Dr. McBride's practice locally in Medina. His name is Dr. Enlow and he is just as nice and attentive as she is. Grandma took me in so she and he talked for about 45 minutes or so. All the while he was checking me out, letting me play with his stethoscope,tear the paper off the exam table and laughing with me rather than at me. :-) He is so cool. I even grabbed his glasses and he didn't even get angry about it. Gotta love a doctor with a sense of angel-humor inside him.

Anyway, he asked grandma how the Keppra was working out and she told him no seizure break through noted, but that I was definitely a bit on the hyper/agitated side since we began using it. She told him that she chose to go with Keppra as she didn't want to see me poked for regular lab work if we could avoid it and he seemed to understand. He suggested adding Catapres/Clonidine at bedtime to my list of meds/vitamin supplements. Grandma immediately responded; "Isn't this a blood pressure medication?" He told her yes, its an older b/p med that has many uses and works well for ADHD. He suggested we try it as he and grandma did not want to use any other ADHD meds like Ritalin if we could find a method to slow me down a bit and allow me to get back to focusing better like I had before the seizures and Keppra became a part of my life.

Well......guess what? It worked! Not only am I more focused but I am more vocal and my left hand tremor/shakiness is totally gone. Can you believe this? I have had this shaky hand thing for as long as anyone can remember and its gone, totally disappeared. Woo hoo! Now this is totally cool if you ask me. I can eat and drink without my hand shaking and am steady as can be. And I only take 0.05 mg of Clonidine to achieve this. I also started my Omega 3/DHA soft gels this week and only eat yoplait kids yogurt with DHA and 25% less sugar now. I cannot even tell the difference with the less sugar and its far easier to scoop with my spoon as it is whipped not creamy! Grandma told daddy its all about brain food. She is so funny about this and feeding my little brain these days. Always on daddy to cut back sugars and foods with lots of coloring added to it. Poor daddy, grandma does tend to read him the riot act at times but deep down we all know she is only looking out for my best interests and keeping me healthy and on track.

Speaking of on track, let me share this one. I have become quite independent with my mealtime and using of my utensils too. Daddy still wants to help and I have been rejecting his assistance most of the week now. Grandma laughs and tells him if he wants to help, just hold my bowl or plate but give me back by spoon/fork cause I want to do it myself. So.....he finally gives in and away I go. You cannot begin to imagine just how fast I can feed myself till you actually seen me in action. :-) I am one speedy little eater these days and have become quite the pro eating with a fork and spoon. I think daddy is having a hard time seeing be grow up these days. Grandma and I have been chatting about that. He loves being my hero and taking care of me as he has done for so many years now. And I do love him for this, but like grandma keeps telling me we will just have to bear with him as he adjusts to my new found independence and give him extra hugs and kisses along the way.

Saturday daddy took Tori and I for new hairdo's. I got mine a cut a wee bit shorter this time to keep it out of my way while I eat. Daddy told grandma I sat like a big girl almost all the way through this salon visit. Of course we think that is also related to the Clonidine medication I am taking now. Tori wanted a new hairdo too. She wanted hers cut like Miss Robin's. Daddy told the stylist to cut it to her shoulders so she did. Tori looked at it and told the stylists it wasn't short enough and asked her to cut off more. Daddy looked at her, looked at the stylist and said do as she wishes. Now she has the cutest hair cut and it has a wee flip on the ends like a grown up. She looks like she is going to be older than 6 years old in 2 weeks! Everyone loves our new haircuts!

This morning was a shocker for me as grandma spent the night. When I got up this morning she took me to the big girls potty and sat me on it. I wasn't too sure why, but I went along with this little game. The next thing I knew I was going pee-pee on the potty! Yes, your reading this correctly. Don't worry, I was stunned too. I looked at grandma, looked down between my legs at what was happening, looked back at my grandma and she was hooting and carrying on telling me what a big girl I was. I am still not quite sure what that all means, but something tells me this is the beginning of a long journey to potty training. At least I thought that is what I heard her telling daddy this morning. Uh-oh, here we go with yet another lesson for me...... Gee whiz, do the lessons ever stop for angels? The don't at my house!

Here is a picture of the potty chair system grandma is buying for me! I had to sneak on her computer and snatch this so you could see what I mean about her and daddy's latest conversation. Looks like I better get prepared for this one!

Did I mention Grandma has been reading Maddie's web page posts and is trying to come up with more lesson ideas for me? Something to do with ABA-ish, PROMPT and spelling? I think I need to angel-fix her computer to keep her from doing so much reading. All she does it get new ideas to try on me and that means more work for one of us namely me! If you could have seen her face this past week when she read how I put a puzzle together at school and that I sucked from a straw 3 times in OT, you would have thought I ran a marathon. Grandma just goes crazy when my teacher and therapists send home these notes telling her and daddy how my day went and what I did at school. I don't know what the big deal is but they sure think its something. Hey, if it thrills them to read about my day at school, I say go for it. But it generally adds to my lessons at home. Like since Rita (my PT therapist) and grandma met, I get to do my exercises 3 more times a week. :-( Since she taught grandma how to do them I have to sit on the floor and watch PBS kids and exercise while watching my cartoons. No rest for this angel that is for sure. Who would have figured my cartoon time would turn into an exercise program? Certainly not me!!!!

Well folks, its a school night so gotta go to bed and get my rest. Who knows what this week will bring for me....but you can almost bet it won't go without a lesson of some sort. LOL

Angel hugs and sweet dreams to all.

Missed a couple weeks of blogging...So let's play catch-up!

As you can see I fell behind in blogging. Been a long 2 weeks as I caught a virus going around the schools/daycare and have been on antibiotics and I am finally like myself again! :-)

To catch everyone up, grandma is doing excersises with me to keep my ligaments and tendons loose in my legs. I will share the video of Rita (my physical therapist) teaching her how to do them. Rita and grandma also got permission from Dr. Fleissner my ortho to add a 1/8" foam insert under my right shoe insole. You should see me go! I walk straighter and twice as fast as I ever did. I even tried running from daddy and grandma. It was too funny seeing the look on their faces as I darted to the counter to get a treat that they did not want me to have till after dinner. I just don't understand why I cannot have my mini marshmellows before dinner! What is up with that? Grown ups have far too many silly rules if you ask me!

Oh yeah, they are still slipping mickey's in my food. The latest is the Omega 3 in my pudding cup and I heard grandma ordered strawberry DHA softgels from LuckyVitamins.com as she read Nordic offered the purest quality and they are suppose to taste good. Hmmmm...imagine a fish oil gelcap that isn't suppose to taste like fish. (I will beleive it when I see it). I think she is going over the edge with all this but since my neurologist suggested Omega 3 there is not a chance I will ever convince grandma to skip this supplement being added to my diet. Wish me luck as I hope these strawberry fish capsules taste better than they sound. LOL

School has been great and I am eating like a little horse or so they say. :-) My appetite is back to normal and I am getting plenty of veggies, fruit and yogurt. Oh yeah, get this....Yoplait kids yogurt now has DHA added to it. Leave it to my grandma to find this out and that just happens to be the one that daddy bought without even realizing it. Grandma says to check it out for yourselves if your interested.

Here is the website:http://www.yoplait.com/kids_nui_dha.aspx. It appears to be very healthy for my brain, my muscles, has added calcium and vitamin D and so on. Good thing I happen to love yogurt and Dora the Explorer or I might have turned my nose up to this one! LOL

Oh yeah, for Valentines day I gave all my friends Tinkerbelle valentine cards. They were so cute! And we got lots of goodies from school. Grandma & Papa got us valentine fruit roll-ups and fruit snacks. Always thinking of healthier ways to keep up away from all the candy. Grandparents seem to have an issue with kids and candy. Why is that? :-(

Daddy is looking at a different daycare setting for us as of late. There is a lovely woman who lives fairly close to us and we went to meet her yesterday. She said we can call her Aunt J. That was Tori's idea but her name is Miss Joyce. She sits for her 3 grandchildren and has a huge playroom! And most importantly she liked me! That is the special part as she is not afraid of caring for me or the fact that I have seizures. We really did not know if we would ever find someone who was willing to take on a special angel that loves to explore the world around her like I do. But Miss Joyce appears to be the one! And best yet, Tori can still get on her school bus from Miss Joyce's home without any transportation issues with the school.

God is definately looking out for my sister and I, isn't he? Though we will miss going to see Miss Robin at daycare it is a bit much for her to continue with me as her census is high and she does not have enough helpers to oversee all my special needs. She is a wonderful woman and I love her greatly but I also understand that I can be a bit of work. Not everyone is cut out to care for special children and I understand this. We will just have to go and visit her once in awhile just to let her know how much we appreciated her being there when we needed her. She is an awesome woman and we love her dearly!

I have to tell all of you that I think our little world is in a good place these days. So many loving people surrounding Tori and I. We have clearly been blessed the past few months with all that has been going on in our lives. And daddy seems so relaxed and comfortable in the world we are creating these days as a family. We eat well, we sleep well and we have a daily routine that is uninterrupted with turmoil and chaos. If I awaken at night daddy comes in and checks to see if I am wet or thirsty and attends to my need and back off to sleep I go. I am averaging 9-12 hours of sleep now! Can you beleive this? Never before did this happen! And some nights I sleep without wakening at all. I guess I am just a routine kinda gal. LOL

Well I am going to go find my excersise video and get it ready for posting. That way you can see what Rita and grandma are doing these days to keep me limber. I have a pretty good team of loving people working with me to make my life the best it can be. Even with the time-outs that I have been getting lately for misbehaving and getting into the wrong things. I just cannot help myself sometimes and when I am in the wrong daddy and grandma put me in time-out and I sit until they tell me I may get up. Its a bit boring when it happens and I am now pouting more to see if I can change their minds, but it has not worked so far. Grandma smiles at me when I pout and tells me; "go ahead little one and pout, your still going to learn what you can and cannot get in to." Well for now, special hugs and thank you's to all those involved in making life the best it can be for me and my big sister Tori. xoxoxox

Here is my physical therapy video:

Keeping you current.... :-)

Hi everybody!

Well another week has gone by and boy were we busy! I went to the neurologist for my follow-up visit to see how I am doing on the Keppra and if my seizures have been under control. And they have! As of late I have been a bit agitated and not quite myself. I have also been pushing my luck a bit by throwing things far more than usual. And I was doing really good about this before, especially at preschool. :-(

Grandma tried to play lego blocks with me while we were waiting for the doctor to come in and examine me. Grandma would pick them up and me, I would just throw them across the room. She asked me to stop and I just ignored her request totally. Bad move on my part now that I look back on this situation. I got put in time-out!

Yes, you are reading this correctly. My grandma told me to sit in the little tyke chair and stay there. I could tell by her tone of voice she meant business! So sit is precisely what I did! And I and sat and I sat and I continued to sit in that silly chair until Dr. McBride came. When Dr. McBride opened the door she stopped abruptly and stood there looking at all of us. It was rather funny cause I could see that she was a bit puzzled by what she saw.

She looked at me, the at grandma, across the room to Lisa...back at me again. Then asked grandma if she had missed something? Grandma told her that I was in time-out for throwing lego blocks. Can you believe it? My grandma tattled on me! Dr. McBride smiled and asked how long I had been sitting there and they replied at least 15 minutes, maybe longer. Dr. McBride got an even bigger smile on her face and said "GOOD GIRL EMMA!" Now what was that all about?

Just when I thought I was about to finally be rescued she walks right by me and sat down on her stool. Then proceeds to talk to my grandma. All the long asking silly questions like; Is she still acting overly sedated? How is her appetite? Is she sleeping well? Blah blah blah. This whole time they still have me stuck sitting in that chair! :-( Some fun visit I was having.....NOT!

Finally, Dr. McBride tells me I can get up. Well this stubborn angel did not budge. I wasn't taking any chances that she was trying to trick me so I waited till all of them told me that I could get up before I moved an inch. And when they did, I got up and went straight to Dr. McBride and let her pick me up. :-) Everyone just giggled and that was that. I got my back looked at, my legs looked at and Dr. McBride told grandma I was a really healthy little angel, overall. Yippee! Finally a little positive turn in my doctor visit. Oh yeah, I also gained a little over a pound since January 2nd. I am finally in the 50 percentile for the first time in my life. I didn't grow any inches but I gained a little weight.

It was decided that I would stay on Keppra for at least another 3 months and add Omega 3 as a supplement to my diet. If I understood all the adult talk going on, Omega 3 has been known to curb the agitation/restless feeling I appear to be experiencing. Something to do with fatty acids?So I imagine they will be slipping another mickey into my strawberry milk soon. Funny how they don't think I know they are putting things in my milk. I guess I will just keep that between all of us for now. Why tell them that I know what they are doing? If they find out that I know they will only look at another method to get these supplements in me and personally I like my food just the way it is. :-)

As for the remainder of my week it went on just fine. Grandma met my teacher, my OT and my PT ladies at school after our visit to the doctor. Rita shared a few excercises she would like me to do at home 2-3 times a week. They are stretching excercises and though they are a bit uncomfortable to do I laugh when grandma does them with me. Seeing her sit on the floor with me is quite funny. She makes me laugh so hard that I forget that I am getting a work-out. And thats just fine with me.

Oh yeah, daddy took Tori and I to lunch Saturday at Red Lobster. We were good as gold for him as usual. Going on dates with daddy is one of our favorite things to do. I guess you could say that Tori and I like older men. Hee-hee! Well, that pretty much sums up of another week in my life. I sure hope all of you are feeling well and had a good week too. Though so many of us had a rocky start to the New Year I hope we can move forward now and have a great 2008. I know I am counting on things looking better soon for all the angels across the world.

Don't forget to keep Matthew and his family in your prayers. They are having a really tough time right now and Matthew needs all the support he can get. Grandma says it is times like this that we much all count our blessings as Fay and Matthew's daddy are really in need of all the prayers we can offer. Special thanks goes out to Darren for keeping the listserv up to date. He is one special man and all of us appreciate his being so supportive of this family in their time of need.

Special Angel hugs and sloppy kisses to all....

Had a great week!

Hi everybody! Thought I would share my week with you. I am finally feeling better and seem to be adjusting to the Keppra. And no seizures have been seen lately. I go to see the neurologist on Tuesday for a follow up so I will let you know more after my visit.

This past week Tori and I got our report cards from our schools. We both did AWESOME! One would never know by our grades that we have had so many changes in our lives over the past few months. But then again, when you have the family and friend support we have how could we not do well?

I do not know any details regarding my daddy's divorce or his battle to keep us with him but I think I can tell you this for certain; "God has been very kind to my daddy, Tori and myself over the past few months. He has sent a wonderful group of guardian angels into our lives since September. We have Dave, Gillian, Miss Robin, Lisa and most recently our newest angel Shayne." They ARE taking extra special care of the three of us and we are so thankful to all of them.

Grandma reminded me to thank all of you for the prayers that have been sent our way. She whispered in my ear that God has been listening to them all.

So a special thank you to everyone and sweet angel dreams to all. xoxo

Just a wee update.......

Well folks, I am finally feeling more like myself the past couple of days. Giggling and laughing and definitely a bit more sturdy on my feet. Woo hoo! Grandma is finally relaxing a bit for the first time since this whole ordeal began on January 2nd. I know my daddy is happy to see the worrisome look leave her face. He kept telling her to not let my reaction to the Keppra get her down and he even told her; "Mom you are the one who prepared me for Emma to possibly begin having seizures and now your the one who is not handling it well. What is up with that?" You should have seen the look on my grandma's face when he said that!

Needless to say I don't think grandma found that amusing...but my daddy was merely trying to get her to relax and stop worrying so much about me. You know it isn't healthy for her to worry like this. Daddy is merely worried about her health, just like he does Tori's and mine. You just gotta love that man...

Tori has come down with a cold this week so she is getting the old cherry Vick's vapor rub down and the Children's Tylenol Cold syrup. Sure glad its not me this time! Oh yeah, I see the neurologist for a follow-up appointment on the 29th so if all goes well maybe we won't have to change medications and I can settle back into my routine of meeting more milestones. I was really doing well before the seizure stuff started and I know grandma is wanting to try a few new things with me. :-)

There is no rest for the weary...LOL. Actually all the new stuff she does is kinda fun. And we all know we angels are clearly in to having lots of fun. Did I tell you that I like to sip out of a big persons cup rather than a sippy cup? Not sure why as I sure have a bunch of different sippy cups thanks to grandma and Walmart. I think we must own one of every style now. I just don't like them. But I do like sipping from a big girl cup. I look really grown up when I do it and get lots of "good girl" praise every time I take a drink.

Oh yeah, I almost forgot. Auntie C made me some really neat bibs this week. They are waterproof and great for a drooling angel. I will have grandma take a picture of me wearing one so I can show you just how cool they really are.

Well off to slumber land till next time. xo

Still struggling along....geesh the meds are a downer!

I promised to keep everyone current on the Keppra medication so here ya go! I am dragging myself along day to day fighting to keep awake and on my feet. I get so groggy that it is tough to make it through my mealtimes right now and lately the physical therapists in making notes regarding my not being myself and doing things I once did with ease. So my family is not the only one seeing the changes as of late.

This seizure gig is not fun and I just want to get back to being me again. I hope it happens soon as grandma is really anxious to have me back to running her ragged, laughing and giggling all the time. I might tire her at times but I just found out she really likes all the things I try to get into and all the new milestones I was achieving before this seizure stuff began. She is simply not happy seeing me like this. And we all know that old saying: "If grandma isn't happy then....." (Just kidding grandma, I know you are worried).

Daddy keeps reassuring her to hang in there but lately she is very emotional and hurting inside from my inability to display my usual enthusiasm and joy. Hang on grandma.....I will find my way back soon. I promise. xoxo

Meet my grandma....

Well...I thought is was high time you all got a glimpse of the voice behind Miss Emma. By now you have all figured out how active a role my grandma plays in my daily life. She is the one talking to all of you and learning all the in's and out's of Angelman Syndrome so that her and Daddy are ahead of the game when it comes to me and what to expect next.

Check out this short video of us and note that our camera woman is none other than my sister Tori. Gee she is so smart for only being 5.10 yrs old. She even reads Dick & Jane books now to me and grandma.

I thought I would let you know that I am still a bit out of it with the Keppra dosing going up recently so don't panic. My grandma worries enough for all of us as my Daddy likes to say. It is a good thing he is so collected when it comes to me as grandma is totally the opposite. She is all about emotions when it comes to her grandchildren and tends to take everything to heart. Some of you already know that as you have been writing and supporting her emotionally as she takes this trip with me into the world of seizures. Its been a bumpy trip so far but everyone tells us it will level off soon. So I continue to hang in there with daddy and grandma by my side.

Angel hugs and sloppy kisses to all.

Still adjusting to life on seizure meds.....

Hi everyone! I am still trying to get use to life on seizure medication. It has definitely been an adjustment for all of us. Grandma has been chatting with lots of parents on the Angelman Listserv and getting lots of support from all the other Angel families in regards to all the changes I am having with this new medication. And my Daddy has been chatting with my neurologist too just to keep her current on me and how I am doing.

It appears that this med stuff is a rocky ride for at least a month or so till my body gets use to it. They say that I may even have to try a couple different kinds till we find the one that works best for me. Did you know no two angels are alike? Gee...I thought an angel was an angel but apparently we are all "unique" and special in our own way. And we all react differently to seizure meds and can have lots of bumpy days till we get the dosage just right. Its kinda like the three bears and the bowls of porridge. Not too hot, not too cold, but we want it just right. (Hee-hee)

I have to tell you, my Daddy has been calm and collected through all the changes I have had recently. And boy is he good about my getting my medication on time.... every time and keeping me on a schedule. The doctors said that is VERY important with my seizure medication. I guess you could say I am just a routine kinda gal..... But then most angels are from what we are told by all my angel friends parents.

Oh yeah, I have to share this with you. My big sister Tori finally mastered tying her shoes. We are all so proud of her. She even earns an allowance now for making her bed and keeping her room picked up! How cool is that? Me, I am not into shopping for my little pony's so daddy still makes my bed and picks up after my me. And you know what? I like it that way....lol.

Tori is also reading books now! And to think she is only in kindergarten. Grandma got her this Dick and Jane book and she reads to all of us. Isn't that something? I told you my big sister was smart. Today I found out that Dick and Jane have a dog name Spot and a friend named Sally. And they all like to look-look and run-run a lot.

Well gotta go for now. Wishing all my friends and family good health and lots of angel hugs tonight. xoxoxo

What a New Year so far...

Hi Everybody! Well its been a bit of a rocky start for 2008 so far. Not as rough as some of my angel friends, but rough enough to rock my Grandma's world a bit.

You see, on January 2nd, I got to take a ride in an ambulance. Yep! I guess being an angel is going to have its ups and downs. What was once a possibility is now a fact. It appears that what others thought about me having seizure like symptoms was correct. And they finally presented at daycare! Ugh....Poor Miss Robin (my daycare buddy) got the scare of her life when I went into a full blown seizure shortly after I got there. She had to dial 9-1-1. I never meant to frighten her but I did. :-(

She rode right along with the squad to the hospital with me and was in tears when we arrived. She is such a gem and loves me so. And Grandma and Daddy beat the ambulance to the hospital. Their faces were the first I saw when they wheeled me through the big ER doors. Grandma looked as upset as Miss Robin did and my Daddy was calm and collected as usual. What a great guy. He just winked and smiled at me letting me signaling that all would be just fine. Then he bent over and said; "I love you Peanut." And as usual, he was right......as by the end of the day everything was just fine and we all went home. Such a smart Daddy I have.

I gotta tell you though, I never saw so many people hover over me as I did that morning. Where did they all come from? Doctors and nurses poking and prodding at me. For goodness sake. Grandma tells me that I looked frightened but really I wasn't. I just did not understand what all the fuss was about. I knew Christmas was over and it certainly wasn't my birthday...so why so many people? I knew I didn't plan a party and I know that I sure would not invite all those strangers if I had.

Oh yeah, I almost forgot. Me and Grandma did a CT scan together. You know pretty pictures of my brain but without the photographer and the squeaky toys. Then later we all went to Akron Children's Hospital to meet my new doctors ahead of schedule. I wasn't suppose to meet them until January 30th. But you know angels, we like to do things in our time not theirs. Hee-hee.

The new doctors hooked me up to this fancy television with lots and lots of little wires glued to my head. Now that was a trip if you ask me! Once again, Daddy sent Grandma with me since she was so scared. He knew I was the only one that could keep her from worrying. Leave it to my Daddy to think of her instead of himself. He knew the only way we could keep my Grandma from losing it was to keep her by my side. She is such a worry-wart when it comes to me. Thank goodness that my Daddy is so patient and composed. Otherwise I am not sure how we would have gotten through that day!

Anyway, they hooked me up to that television for an hour and a half. And not once did I see Elmo or any other cartoon. What is up with that? Not to mention that this was way too much laying still for this angel. I was getting pretty darn restless by the time that lady told Grandma she could stop laying her arms over my chest. And to be honest, I was getting a wee bit tired of Grandma singing to me by this point. I mean I do like when she sings to me but enough is enough~ How many times can any one person listen to Twinkle Twinkle Little Star and You Are My Shining Star?

Daddy was waiting for us when we finished that silly TV test and then took us to meet the new neurologist. You know the doctors I didn't want to wait till the 30th to meet. And my Grandma told the nurse that I had missed my snack time and lunch. So guess what? They brought me apple juice and graham crackers! Woo hoo! Now your talking. That put a smile on my face and lessened the rumbling in my tummy.

I really just wanted to go home to my house. So...the doctor came in and looked me over. Told Daddy and Grandma that I had 3 variations of seizures running about my cute little head. Generalized Tonic-clonic, atonic and atypical absence seizures is what I heard the neuro doctor tell them. Wonder what all that means? All I know is it meant I take some new medicine and am finding myself a bit restless and out of sorts. And ........my silly Grandma has added a new vitamin to my daily supplements called B6. At the rate I am going I will be taking every vitamin in alphabet before too long. Just kidding.....but the life of an angel sure means lots of healthy supplements doesn't it?

Oh yeah, you will get a kick out of this one. They are sneaking these new vitamins in my pudding & yogurt. (Like they think I don't see them crushing them up and sprinkling them in my treats?) Wrong........I am way smarter than that. I just don't put up a fuss and let them think that I don't' know they are doing it. After all, if it makes them feel better to think they are out- smarting an angel, hey what the heck. Let them think what they want. You and I know better!

Well it is off to bed for me so sweet dreams and angel hugs to all.