Proud Mommy!

I am Proud of my girl, she was diagnosed with a Seizure disorder (C.A.E Childhood Absence Epilepsy) over 2 years ago. Every time we spoke of it she'd walk away or cover her ears :( she just didn't want to hear it. But she wanted to raise money and awareness. But I don't think she fully came to terms with her disorder,what it is,how to treat her and how it really affects her.
She's Brilliant in dance, she can remember a whole dance/steps/routines in a matter of minutes, but when it comes to remembering numbers, retaining info or spelling her brain fails her. It takes her longer to figure things out and she has to read something over and over to really get it, but she does it.
We can only speculate what these seizures are doing to her Brain and even more so what the medications (Depakote and Keppra) are doing to her too :(  We already know the Depakote was making her hair come out (though not as bad as it could have been) it lowered her Blood Platelet Counts last Summer and weakened her Muscle Tone.
This past week we started talking about "Seashells for Seizures" The Fundraising Awareness Project that we've been working on. She wants to go beyond Seashells, maybe Sheep (LOL Colleen/Greer and Tina) hey it starts with an "S" too and baby sheep are comforting and cute. Maybe even some Bracelets in Purple the Color of Epilepsy Awareness....  She wants to maybe even start a Blog!
And just last night on Twitter she Tweeted- "I have Epilepsy"

A big step for her considering she used to say I have this "thing".
January 15th, 2012 was her 2 year Anniversary of her 1st Seizure. In 20 days, June 15th (Yes eerily 5 months to the day after we had her 1 yr Anni she had her second Outward) we Celebrate her 2nd Anniversary of being Seizure Free (meaning no OUTWARD Seizures requiring an Emergency Hospital visit)  Every year that passes that she does not have an Outward Seizure is a step Closer to a seizure Free Life!(Of course no seizure activities on her EEGs Help too!)
I am so proud to have this talented Little Burrito as my Daughter!


 Absence Seizure - the occurrence of an abrupt, transient loss or impairment of consciousness (which is not subsequently remembered), sometimes with light twitching, fluttering eyelids, etc.; common in petit mal epilepsy
Absence Seizures are commonly mistaken for Day Dreaming.

What is Childhood Absence Epilepsy?
Absence seizures are generalized seizures that occur in school-aged children usually between the ages of 5 and 9. (Baylee is @ 2 years behind in Growth which may explain her getting C.A.E at the age of 11) Sometimes CAE can be inherited, but it can also occur as a sporadic event. Typical absence seizures consist of sudden cessation of movement, staring, and sometimes blinking. Sometimes, there may be a mild loss of body tone, causing the child to lean forwards or backwards slightly. Unlike other types of seizures, absence seizures occur without an aura or warning. When diagnosing CAE, typical absence seizures need to be differentiated from atypical absence seizures which can occur at an earlier age. An EEG of a child with CAE will show a typical pattern known as 3-Hz generalized spike and wave complexes.
Many children with CAE have normal neurological examinations and intellectual abilities. However, some children may have developmental and intellectual impairments and may have other types of seizures including, but not limited to, tonic clonic seizures. (Baylee's 2nd Outward Seizure was Tonic Clonic  lasting about 10 minutes it was SCARY!!!!)

May Madness

Catch up Time!!!!! 

We are in the midst of Dance Recital Madness which means are nerves are set on High! (This year will also mark her 2 year (outward/no Hospital Visit) Seizure Free Year!) Add on 2 dental visits (deep Cleaning and removal of the last 4  very stubborn baby teeth) major loss of blood, a Hip Hop dance that requires an Army Crawl resulting in Bruises on Knees and Elbows, preparing for end of the year testing and making sure the girl doesn't get over worked/overtired.....yeah things are a lil hectic. BUT the girl's dances are AMAZING the Costumes are BEAUTIFUL,her teeth look FABULOUS and Cavity Free, she's doing really well on testing reviews and we are making sure she is getting extra rest. 

This year's recital theme is 80's music it's pretty exciting to hear some childhood Faves ;) :D Ok maybe not so much "child"hood and maybe more "teen"hood haaaaaaaa! Trying not to date myself here ;)

Ohhhhh the most exciting news is that we met Bay's Fave Actor from the Disney Show Shake it Up- KENTON DUTY  at Planet Hollywood in the city! She was beyond thrilled (but a little nervous). Such an amazing young man, great personality,sweet and very Tall!

I've been still recovering from my wrist injury (a really bad Pinched Nerve)  BUT then injured my elbow on the same arm,then broke a toe, yes I am a HOT mess! Crafting these days consists of Pens/silk flowers/duct tape and pipe cleaners but it's all pretty magical none the less :D

We are REALLY looking forward to Summer and the BEACH and POOL! It can't come soon enough!

More to come soon........

Neurology Update 4/4/12

Went to NEURO this morn- she actually lost 2 lbs since Jan. she lost her holiday weight Haaa... (well she's been dancing so much lately)
she's at 67.6lbs and has grown a 1/2" which puts her at 4'9 :D YEAH
and now the BEST NEWS EVER....EEG Results ........
*~*COMPLETELY NORMAL!!!!*~*! Both in office AND 24 Hr!!!!!
Now before we get overly excited her Neuro did say it could be the Depakote that has made her EEG's normal and since her seizures were so erratic he's starting to wean her down slowly.
With these results she has a 70% chance for another abnormal EEG and a 30% chance of having another outward Seizure/Seizure Activity. If she stays Seizure free before we see him in July he will take her Depakote down some more and so on! :D YEAH BAY!!!!!!!! One Step Closer!!!!!!!!!

Long over due Update....

Oh dear my last update was in September :( I am really BAD at this blogging thing! Ok soooo since September.......I now have a 13 year old! Baylee turned 13 in December! Health wise she's been doing well. Her Blood Platelet Counts have gone up and she's gained some muscle strength! She is still on Depakote and Keppra BUT we are due for EEG's (This Thursday 3/8 and then again Tues 3/13) hopefully we will get some good results and her Neuro can start to wean her off the Depakote!

Back in October I pinched a nerve in my right wrist really BAD :( and wore an Air Cast for over a month. Then I had Tendonitis flare ups in both wrists (yep I was a hot mess!) So I really haven't been crocheting :( too much. But I still managed to do 2 Holiday Fairs and actually did well!
I am now just starting to get back into crocheting a bit, but I have been sewing plush to alleviate stress on my wrists.

I am in the Process of revamping my plush/craft line and hope to post some stuff soon!

Summer 2011 is over :(:(:(:(:(

Well summer is over :( it's been an epic one! Baylee learned to swim like a little Mermaid and she learned to ride a 2 wheeler
But most importantly she's been Seizure Free (no Seizures requiring a hospital visit) for a little over 1 year! (June 15th) Though she is still having seizures they are not outward.

Health wise she's was put on a supplement because her Creatine Levels(Muscle tone) were too low and Keppra was added on top of the Depakote because her Blood Platelet counts went too low also :( The culprit being the Depakote so her Neuro added in 2mm of Keppra and lowered her dose of Depakote to 500mgs. With the hopes of weaning her off the Depakote totally in time!

We went to Valley Forge again and had a much needed weekend in Baltimore Harbour. But our lazy summer days were spent in the pool and the Beach! We went to see The Wiggles and had a meet and greet, we had an Earthquake in which we didn't feel because we were standing in the middle of AC MOORE, then we had Hurricane Irene. Yup it was an epic summer indeed!

So here we are Homeschooling Grade 7 :D year 7 of Dance and Celebrating a 13th Birthday in December YIKES!!!!How many days left till Summer is here again?????

Counting down the days.......

(Tap costume!)

Until Baylee's 1 year Seizure Free Anniversary!!!!
This doesn't mean she no longer has a Seizure Disorder it just means that she's not had an outward Seizure requiring a hospital ER visit in 1 year.
We are 12 days away and counting. We have loads of Dance rehearsals, classes and 1 recital performance to get through first. It's been a nerve wracking few weeks. Each year she gets through without an outward Seizure the better there is hope that she will outgrow CAE (Childhood Absence Epilepsy) and her Neuro can ween her off her meds.


Yesterday at dance she was a little "off" which happened last year right before she had her seizure, maybe I am just being paranoid :( I had asked her to the point of annoyance if she was feeling ok LOL poor kid! This morning she was her cheerful snarky self guess she's doing alright!!!!

Towel Puppies!!!!!

Look what happens when your bath towels get a little naughty! They give birth to a litter of Puppies.......

They are so much Fun to make and are usable as all parts are either rubber banded,tied or pinned! But we have some children safe versions with glued on eyes and noses!

Baylee has gotten into the puppy making act too, here are 2 of her creations that she made all by herself......

I'm so proud of her!!!!