Well folks, big update. I am not deletion +, but actually UBE3A. Poor daddy was so overwhelmed with the genetic specialists phone call at work yesterday that he got a wee bit confused. But he has it all straight now as I was sick yesterday afternoon and had to visit my pediatrician today.
While the pediatrician was making sure I did not have an infection because of my high fever last evening Daddy asked her for a copy of my results from the specialist to read. When we got home he shared it with grandma and my big sister Tori and that is when we found out that I am UBE3A. Oh well, all that matters is it is confirmed once and for all and life can go on as usual.
Anyway to stay on track, it turns out that there is a bug going around the county we live in and it causes high fevers. The good side is it only lasts about 24 hours so I am through the rough patch now and doing just fine. As a matter of fact, I am starting to feel like my old self again. :-)
Daddy took really good care of me last night. He gave me cool tubby, some pear juice and my tylenol. Grandma rocked me for a bit then laid down with me and rubbed my forehead till I went off to sleep. I slept for over 9 hours! Can you believe that? I mean I know my sleep has been really good the past few weeks but 9 hours is a bit much for even me!
Now I am wondering what I missed out on last night? :-(
Daddy stayed home from work today with me. I even took a morning nap after a wee bit of breakfast. Yes, your reading correctly, a morning nap! The little girl who never naps took one this morning. But not to fret as I am feeling more like myself right now and I am thinking about getting into a little mischief. Gotta keep daddy on his toes now don't I?
I sure hope he got some rest last night just in case I decide to pull an all-nighter. You know we angels are really good at the all-nighter's and I cannot have one without inviting my daddy to join me.
Wishing you all good health tonight....xo
Wednesday, December 19, 2007
UPDATE...I am an Angel...but not deletion +. I am UBE3A.
Tuesday, December 18, 2007
Diagnosis is in, I AM AN ANGEL!
Hi everyone. Just a quick note to let you all know Daddy received the phone call today and I AM AN ANGEL!
If daddy understood what the doctor tried to explain, I am deletion +. He was a bit taken back by the phone call at work today but that is how he recalls the genetic specialist explaining things to him. I guess paperwork is coming in the mail too just to confirm everything in writing.
So no more "clinical" after my name......I am the real deal. xoxoxo
Sunday, December 16, 2007
Guess what Tori & Grandma did?
I am gonna have daddy get a picture of our tree to grandma so you can see it too. Oh yeah, daddy took us to see the Christmas light display at the fairgrounds last night. Wow! I did not know there could be so many lights in one place. I think all those lights hypnotized us as we both fell asleep on the drive home and poor daddy had to carry both of us into the house last night and tuck us in. I can't believe I missed my tubby-time! That NEVER happened before. I guess there is a first time for everything isn't there? Sweet dreams....
Friday, December 7, 2007
First they say I don't sleep enough, then when I do they go and wake me up. Silly grown ups...do they know what they really want from we angels? Grandma taught Tori and I to play ring-around-the-rosie this week. And I got it. I know how to drop to my knees at the perfect point when she sings ashes, ashes, we all fall down! I just loved the look on all their faces when I did that. Hee-hee.
Oh yeah, got to put in a plug for my big sister. She got her kindergarten report card and got really good marks daddy said. The teacher says she is bright and doing very well in school. I already knew she was smart as she looks out for me. She always tells daddy if I want a cookie or a drink. I really like that part about big sisters. We don't have to say a word, they take care of getting the goodies for us.
Jennifer sent Grandma and Daddy some ideas to help with my constipation problems and I am getting much better. Who would have known canned pears would be so good and work so well at relieving my problems? And...........I get to drink the juice (watered down of course) afterwards. I gotta admit, grown-ups are smart aren't they?
Well grandma is coming over tomorrow morning early to sit with us for a bit so daddy can go to work. Its is 1/2 workday this Saturday. I better get to bed, as she will be expecting me to greet her early.
Angel hugs and sloppy kisses to all,
Miss Emma
Sunday, December 2, 2007
Guess what all I did Saturday?
Angel hugs and sweet dreams to all,
Tuesday, November 27, 2007
Great News!
Daddy got a letter approving further testing for me to try to confirm my clinical diagnosis! I am going Friday. Maybe we will once and for all get the answers we have been waiting for. And a wee bit of help for my daddy with the extra little things I need day to day once my diagnosis is confirmed.
I know I am an angel and so does my family. But sometimes in life we just have to walk that extra mile to prove things to others. Wish me angel luck....
Peaceful sleep and sweet dreams to all the other angels tonight. XO
Sunday, November 25, 2007
Well, they almost goofed today!
Grandma and Uncle Jimmy tried to add music to my blog page and in the process Grandma got the bright idea to change my template too. Bad move!!! They lost over half my posts and pictures and we never thought we would find the original again. Luckily she found it tonight (or should I say this morning?) and we are back on track. ."
Too funny how adults always come up with such silly ideas, isn't it? Sometimes its just best to laugh to myself at what they can get into. And they all worry about me getting in to trouble? Hmmm...I think I will remind them of tonight the next time I hear "no-no Emma
P.S. Sending a special "thank you" to Steph & Brady for sharing their blog page song with me, as grandma never did figure out how to include one on her own. Angel hugs and sloppy kisses to you both!


