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.