Monday, November 30, 2009

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.

Sunday, November 29, 2009

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.

Saturday, November 28, 2009


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-

Tuesday, November 24, 2009

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."

Monday, November 23, 2009

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.

Sunday, November 22, 2009

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.

Friday, November 20, 2009

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.

Sunday, November 15, 2009

My, my, my....

a little attitude issue, no? Well, in the words of Will Smith in my most favorite movie of all time, "I could have been at a BBQ".


Saturday, November 14, 2009

What I know for sure

We were completely shocked by the lay off. It wasn't as if we didn't suspect something could happen. It's just that we weren't really believing it could happen to us. We've been blessed by people's generous nature. God provides for His people through his people. I'm amazed at all the details in our lives that are falling into place. Even the tiny, tiny details.

Thursday, November 12, 2009

Epilepsy is a nightmare

Emily has been struggling since she was four. Struggling to learn and struggling to be a normal child with a normal life and normal worries. Her seizure activity has been up and we're struggling to find an answer. The medicine is not working and the side effects are not acceptable. Right now we are waiting for the dotor to call back. Very curious as to what our next steps will be for her.

Sometimes I hope beyond hope that this unemployment thing will lead to a move to another state, to another doctor, to another source of information and help. Texas would be a great choice as far as Epilepsy or even California. We are willing to do and go anywhere. Whatever it takes to find an answer.

My poor girl is suffering and there isn't anything I can do to help her.

Sunday, November 8, 2009

Staying in the middle of it

"Jesus asked His disciples to do something that clearly was impossible. There were five thousand men, along with their families, and they were famished. There were only five loaves of bread and two small fish -- obviously not enough to feed a multitude. The cost of food for even a portion of the crowd would have far exceeded the disciples' small budget. It may have seemed absurd to the disciples that Jesus should ask them to distribute the paltry amount of food to the massive crowd. Yet that is exactly what Jesus asked them to do. Because Jesus had given the command, the disciples obeyed and witnessed an incredible miracle.
Christ will lead you into many situations that will seem impossible, but don't try to avoid them. Stay in the middle of them, for that is where you will experience God. The key difference between what appears to be impossible to us and what is actually possible is a word from our Master! Faith accepts His divine command and steps out in a direction that only God can complete. If you only attempt things that you know are possible with the visible resources you possess, those around you will not see God at work. You will be the one who receives the credit for a job well done, but God will have no part in it.
Take inventory of your life and the decisions you are presently facing. Have you received a word from the Master that awaits your next step of faith? If you will proceed with what He has told you, no matter how incredible it might seem, you will experience the joy of seeing your Lord perform a miracle, and so will those around you."

Health Care Bill

I heard it passed last night. The Democratic Senators and Obama gave a news conference. Put on your seat belts America. I hope that this bill does what they "advertise" it will do and not all the "fine print" items that are actually in the bill. Time will tell.

My favorite (sarcastic) line from Obama is, "Congratulations to the Senators who (made the decision, voted for the bill) despite the fear of not being reelected next term". Isn't voting how we as the American people tell those in government that we are or are not approving of their decisions in DC? If the Senators voted with the knowledge that their constituents were not going to be happy with them.... are they really doing their jobs?

Does God care what goes on in the USA? Does he care about NHC. I think not. I think that what he cares about has aways been the same. I think Christians see this as the eroding away of our democratic republic which could lead to an eroding away of our freedom to worship. Like the eroding away that December 25 is Christmas..... Not a hoiday. It's Christmas.

"If you were of the world, the world would love its own. Yet because you are not of the world, but I chose you out of the world, therefore the world hates you." (John 15:19)

Thursday, November 5, 2009

Time for my blog

Today the carpet people are here trying to relay the carpet correctly. The "flood of 09" made the carpet wavy and pull back from the baseboards. So, I'm sitting on the couch waiting for the work to be finished. Emily is taking a nap. Jackson is watching some cartoons in my room. I have a few minutes to update, no, record the happenings of the last few days.

Les is back at his old job. Don't get too excited. Just for about 25 hours a week and it's temporary. It could end this Friday. It's all up in the air but that provides another opportunity for us to trust God and lay his worries at his feet. He is big enough, faithful enough and willing enough to handle it. In the meantime, Les has had a few phone calls from other companies regarding possible job opportunities. One of those jobs is at Lockheed Martin. While these positions are in Denver it's possible for us to stay here in this house and let Les commute. While commuting would be so hard on him it would be doable for a few months.

If the contract job turned permanent we would have to move. Denver isn't a bad place. More expensive than here but still we would be able to take our time selling our home, etc.

The next few weeks will prove to be interesting. Would like for this chapter in our life to be over. Really want this chapter in our life to be over...

Tuesday, November 3, 2009

You have got to be kidding me.....

Sometimes a question is answered with a "wait and see". I know that and have experienced that on numerous occasions. Les got a call from his previous employer asking him to work a part-time, temporary schedule doing what he was doing before. Here's the "clincher"..... for much less an hour. Seriously? Same job.... This man, while visionary and entrepreneurish, is not a good business man. He just doesn't make good decisions and it cost his company financially. So now we are in a wait and see if you have a job mode- everyday. Hopefully, this is what is going to tie us over until a full time job comes open.

I love though how God answers prayers. While I would have worked a part-time job, I was not looking forward to it. I was dreading it in fact. This job will let Les work for a few hours a week at a much higher rate and will help tied us over. Now I need to focus on getting some more students.

Monday, November 2, 2009

Our refrig....

is leaking somehow somewhere. Don't know how. Don't know why. On the phone with Sears trying to get in touch with their repair department. I've been on hold for 40 minutes.