Announcement:

My younger sister, Jennifer, has started a new blog! I am so thrilled because it will be a way for me to keep up with her daily happenings...even though we live so very far apart.

So pop on over to her blog and welcome her to the blogging world!

http://www.jenncoats.blogspot.com/

To My Brother...

Happy Birthday

David!

A birthday wish for you:

May you live your life and be free.

Smile!

Good news! In the past 3 days we have noticed a significant decrease in infantile spasms and a huge increase in personality and interaction. We have never seen Elisabeth smile and giggle like this before...ever! It was one of the most heartwarming and joyous experiences that we have had in the past 11 months.

The First Day

She smiled ear to ear...from morning till night.

The School Years

Here I am, ready to send my eldest off to kindergarten. It is a day that I have dreamt of since childhood. I always knew that I would be a mother. It's what I aspired to be. And I often imagined what motherhood would be like; preparing precisely cut peanut butter sandwiches, keeping an orderly home, going on walks to the park, driving back and forth to music lessons, and most of all...sending my children off to school with a kiss and an 'I love you'. It's that day, I'm there.

My dear Alexandra, whose name I picked out when I was still a young girl myself, has been a dream come true. She has long brunette curls, and deep brown eyes. She has her mothers love for the violin. She is smart, determined, and a bit of a perfectionist. She is my first born, and today she begins her formal education.

So hair will be combed, and she will dress in freshly pressed clothes. She will wear her backpack filled with sharpened pencils, soft pink erasers, and box of crayons. I will drive her to school and watch as she takes a step towards the future, towards discovering the world, towards discovering herself. And I will smile, enjoy the moment, and hope that the next 13 years don't go by too fast. But just in case, I'll have my camera...

Hot Off The Press

This is a brand new book that was just published about Disney imagineers. Word has it that my grandfather has an entire chapter to himself. I can't wait to get my hands on a copy!

Also in the works...a website that will sell prints of my Grandfather's (Claude Coats) artwork. When it's up and running I'll put a link to it on my sidebar.

Cardhouse Architect

This Hospital Stay Brought To You By...

The letter

K

Ketogenic, Ketosis, Keppra, Ketones, Ketotic....words that I have heard over and over and over throughout the past 5 days. Words that will hopefully lead to Elisabeth's epilepsy being controlled. Unfortunately, we have failed to see any change yet. Her neurologist is a little discouraged by this, as are we. It seems that with every new treatment we try, we are sure it will be 'the one'....the solution to stopping the seizures and spasms. It is still too early to give up on the diet, but I hope that we start seeing a reduction in her seizure frequency soon.

We have started to notice Elisabeth backtracking developmentally. This is stereotypical of infantile spasms. For example, she won't hold a rattle in her hands, she smiles less, she struggles with eating solids, and she can't usually push the keys down on her piano hard enough to make a sound. It's sad to realize that Elisabeth is not progressing developmentally and even sadder to watch her lose skills that she once had. Please, oh please let this diet kick into gear and put an end to these devastating spasms.

Here are images of our hospital stay. A lot of nonsense...but that's what you get when you leave me in a small room for 5 days with a digital camera and rechargeable batteries.

*** You'll notice one picture with Elisabeth and a stuffed dog. This gift was sent to Elisabeth from her friend Owen, a little boy in Virginia who also has hydrocephalus. Thank you Owen and family!

It's Birthday Time!

Have a most lovely day

Heidi!

Still Here

As I suspected, Elisabeth earned herself an extended hospital stay last night. They are trying to figure out exactly what is causing the vomiting so that we can put an end to it.

On a happy note, we found out today that our insurance will in fact cover Elisabeth's new formula. KetoCal, as it is called, is not available in any store and needs to be shipped to us monthly at the price of $400. 00. Ouch. At first our insurance provider said that they would not cover the cost because it was a food product. Luckily, after some negotiations they agreed to pay for 3 months worth. At that time they are requiring documentation showing that the formula is helping control her epilepsy. Fair enough!

Elisabeth is resting right now and I am going to sneak downstairs for a quick snack. Then I am going to curl up with a book (Harry Potter 5) and lose myself in the world of Hogwarts.

Nevermind

Elisabeth started vomiting again. She is absolutely miserable. I have a feeling that this will delay our departure tomorrow. But that doesn't seem too important right now...I just want Elisabeth to get well.

Doing Better

What a difference a day makes. Elisabeth is tolerating the diet much better today. Hopefully she keeps it up so that they will let us go home tomorrow.

In the mean time, I have been getting some reading in. The dietitian gave me a very informative book on the ketogenic diet. It has great stories about other children that have been on the diet as well as tips for parents and recipe ideas. I have also been enjoying the gift shop downstairs. What a delightful place. I would even go so far as to say it's the nicest gift shop that I have ever seen....and I work at a Hallmark store, so I know gift shops! They have the most lovely merchandise and beautiful displays. I could spend all day browsing their store.

My sister-in-law, Heidi, has kept me well fed. She is a talented cook and has been kind enough to have me in their home each night for dinner. Not only is it great to have a delicious meal, but I have enjoyed visiting with her and her family. Yesterday her two girls and I went on a two mile walk around their neighborhood. The fresh air did me some good!

Well, I better get back to the baby. Thanks to everyone for their thoughts and prayers.

~Lisa

Poor Little Elisabeth

They have successfully put her body into ketosis, but she is not responding well. She has been vomiting...major, major vomiting. It breaks my heart to see her so uncomfortable. More updates tomorrow...

8 Years

We did...

...we still do.

Happy Anniversary

to

my love.

Hello From Spokane

We've been busy...going through the whole admissions process...doctors....dietitians....getting blood drawn (multiple times). I have been on information overload. I am trying to take in all that they are telling me and teaching me. So far so good. Elisabeth is busy trying to listen to her music - and not her rumbling tummy! They are making her fast to get the diet started properly. But she's a trooper, she hasn't even made a whimper.

Right now I am over at my sister-in-laws for dinner. I feel guilty about leaving Elisabeth behind, but I desperately need a few hours away from the hospital - for my sanity. Elisabeth will forgive me...I hope.

And I'm Off...

Here we go, just me and my baby. She will be admitted into Sacred Heart Medical Center this morning to finally get the diet started. I am so hopeful that this will be our answer. It has been painful for Donald and I to watch her have spasms for the past 15 weeks, especially knowing the damage they were causing. So keep Elisabeth in your thoughts, and say a little prayer for her. We need this to work.