Today my mood is overwhelmed

I feel overwhelmed and I'm not sure which side is up. Emily took another 3 hour nap today. Obviously not medicine related this constant daytime sleepiness. She hasn't had a seizure in 3 days which we are thankful. Not to be the big "butter" on this blog... BUT she still slept for 3 hours. She is much more alert when she is awake but she is NOT awake very often.

It's just a never ending cycle of crap ola.... Dr. W isn't sure which way to go, Children's doesn't think we are important enough, our pediatrician is in the middle. We have two issues- daytime sleepiness and breakthrough seizures. The daytime sleepiness has gotten exceedingly worse as the year has progresses. Time to solve this. Time to move on to the solution and not just provide band-aids.

Check out Sea of Shoes!

The Crillon Ball is over and Jane has posted pictures. The most alarming news so far is that she had to give Chanel back her dress. Emily is very curious as to why she would wear shoes that hurt her feet and Lauren wants to know if her escort spoke English.

Cinderella ball, beautiful gowns, lovely traditions and Paris. Have I mentioned that Paris is on my list of places to take the girls?

Off to Paris in my dreams.

The imag

Christmas Tree! O Christmas Tree

I love decorating for Christmas. Pulling out the ornaments from over the years. Each with an initial or year on them and a special memory attached. Like a ballerina for Em or a gymnast for Lauren. A soccer ball for Jackson. Of course, the handmade ones are my favorite. My goal is to have a boxful of ornaments for each of my children when they leave the house to start their own Christmas trees. A head start if you will. I have one more tree to go but will wait until later in the month to put the tree up. It's a scripture tree with Christmas themed verses on ornaments. I also have a collection of angels and old style church buildings that I put on that tree. I love it. This year I also did a red and white themed little tree, my country tree and of course the family tree that has not only Santa's on it but the family ornaments. Time to get a new tree so that one tree is family ornaments and one tree is just a Santa tree.

Will try to post pictures today of Thanksgiving and then the new trees.

4/6

Emily had a seizure four out of six days this past week. Crummy. She did get a break for Thanksgiving and today is turning out to be a good one. We will be thankful that 2/6 of last week she did not have a seizure.

Posting Thanksgiving pictures soon-

And then there were none

Emily's seizure yesterday left us all disjointed. Emily slept almost the entire day. She had to go get blood drawn for the doctor's so about 3:00 this afternoon I dragged her to the labs, in her pajamas, hair uncombed, with snow boots on her feet. I should have taken a picture. Still quite dizzy I had to hold her up while she walked. We got a few stares needless to say. About 6:00 this evening Emily is finally back to normal. Still a little of center but it's manageable.

The doctor's at children want us to call the next time and every time she has a seizure. They will determine when she goes back in to the hospital based on the frequency of the seizure activity. Hoping, beyond hope, to catch a seizure on the EEG. This information will prove to be the silver bullet in helping us figure out exactly how to treat her. The seizures are so elusive, the medicine so ineffective, that the Dr said we were stuck between a rock and a hard place. Poor Emily. It's a never ending battle, I just hope that we always have one more thing to try. I do not want to ever hear that we have no options left to find answers or to make her life better.

Living Waters

"The glorious Lord will be unto us a place of broad rivers and streams."

10 minutes

after typing the previous post I heard Emily call for me. She had a seizure. A pretty big one. She's still trying to recover. Still very dizzy, lethargic, double vision, nauseated, the works. I'm sure she'll fall asleep soon. Of course, she's going to have to sleep with me until we get this figured out. I will not be able to leave her alone, even for a minute.

Waiting for the doctor to call me back. Epilepsy is like a snake in the grass. It hits you when you least expect it. Although, I feel like we've been building up to this one in a way. Still very sleepy during the day. It seems as if we take 2 steps forward and 3 steps backwards.

Down to 250 and still sleeping

Well, weaning off of Keppra is proving to be- not useful. She is down to 250 which would make you think she wouldn't sleep as much as she did on 1500mg. Wrong. Still very sleepy. Went to sleep around 10:00 this morning. I'm not sure what I'm going to do now. Keep weaning off of the Keppra down to zero and then watch. I have a feeling the sleep specialist is in our very near future. Was hoping to hear back from the doctor about the next steps but it looks like I need to call him myself.

Never ending story with her. Wishing.... Wishing I could make this all go away. I don't want our next step to be VNS.

The Crillon Ball

The Crillon Ball is this weekend in Paris. Why do I care? I follow Jane's blog and she is an invited guest. She's amazingly talented when it comes to fashion. I don't think she's even 18 years old yet and she has a shoe line. Her mom sells vintage clothing and jewelry in Dallas. They are both beautiful.

My life is not exciting like their lives. I don't fly to Paris, New York and London. I do not get invited to fashion shows in New York and honestly, have never worn heels in my life. But something about shoes and high fashion designers is intriguing. It's a break from the grocery shopping I do weekly and the monthly Target shopping experience.

So Jane and her family are going to the Crillon Ball in Paris and I will be cooking a Thanksgiving feast for 10 people. I may go to the Black Friday sales and if we're really lucky might take the family to a movie.

Paris in November. Paris in March. Paris in July. Perhaps one day we'll make it there.

Tis the season....

I love Thanksgiving and Christmas. Not hard to do because the season is so great. Honestly though, this is the hardest time of year for me. I mourn that my parents are divorced, I mourn that my dad is in another state, I mourn that picture of a Norman Rockwell Christmas. I wish it could be different. So, I try to make that Norman Rockwell picture for my family and fail miserably. Part of that picture to me is the perfect meal, perfect table setting and perfect centerpiece. Thus, my complete and utter neurotic behavior during the season. Also, spending habits during this time of year- not so good. All to ease that hole created during this season.

Part of that picture is a generational presence that is no longer an option. My grandmother is in another state. My other grandparents have passed away. Les's mom and dad have passed away.

Since I can't control things about Thanksgiving and Christmas I tend to get a little sad. Depressed is more like it Then I feel guilty because I'm not focusing on the real meaning of Christmas. The real meaning of Christmas will forever be associated with family. Which for me is forever broken.