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: