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.

Just a Spoon Full of Sugar...

As I have mentioned, I spent the last week sick. Well, due to said illness, I could not bring myself to keep the pace that I usually do. So I had to let some things slip....like the play room.

Here is how it looked yesterday morning (not a dramatization):

This was beyond anything my little ducklings could repair on their own....so I conceded and began cleaning. However, I was not a happy Mama. So I entered the play room with two bags; one for give away items, and one for trash. After an hour alone in the room I am pleased to announce that I pulled a Mary Poppins and order was restored:

I then called the girls into the newly organized space and had a big talking-to with them about the importance of treating their belongings with respect. We also sat on the floor together and read this:

I think it made a big impression on them. We have read this book many times before, but this time they could relate so closely to the story. A little while later I walked by the room and saw them playing:

The best part is that last night, after I had tucked them into bed, gave them hugs and kisses, and whispered countless 'I love you's', I went and peeked at the play room...and it was still clean!

Updates (of all sorts)

My Health:

ugghh...I have been sick for a week, and while I am not deathly ill, it's still a nuisance. I've had it all, pink eye, aching from head to toe, stuffy nose, sore throat....need I go on? I'm on the mend though.

Soccer:

Alexandra scored her first goal yesterday. Woohoo! You can't even imagine how excited Donald is about this! One very proud papa.

Parent/Child Swim Class:

Donald and I just finished a two week swim class with Lorelai and Elisabeth. Unfortunately, Elisabeth missed several days due to my being sick, but she still benefited from the experience. She went from being frozen with fear on the first day, to kicking and splashing on the last day.

Deal or No Deal:

Still waiting to hear from the producer. I emailed him last week to see if they had made a decision yet. He wrote back and said, "I want to do everything in my power to use YOUR school". Apparently he attended the reunion for the other school and they did something that really angered him. So hopefully one day soon I will get the call to fly on down to SoCal for the taping!

Kindergarten:

It's just around the corner. Yesterday Alexandra received a letter in the mail from her teacher telling her when her orientation day is....exciting! We have been having fun shopping for school clothes. One of my favorite outfits we have put together:

Infantile Spasms:

Still going strong :( . You never know when she is going to have them. One day I was helping Elisabeth play the piano when all of the sudden she had a spasm and her head went smashing into the keys...ouch! She will be in the hospital all next week to start the Ketogenic Diet. More on that later.

Eating:

Speaking of Elisabeth and her diet, I can't get her to eat....solids, that is. She refuses. It could be a result of the spasms. They take a child backwards developmentally and cause them to lose skills that they once had. Well, she will not eat, and I can find no other explanation. I try putting food in her mouth and she just lets her mouth gape open until it all dribbles out. Thank goodness she still takes a bottle.

Enjoy your weekend! Since I'll be out of town with Elisabeth all next week, I will spend the next few days getting my household in order. I want to know that things are running smoothly on the home front during my absence! I will continue to post during our hospital stay....trust me, I'll be bored out of my mind and searching for things to do. Till then...

Let There Be Light

Donald got a spotlight and lantern set for his birthday. He spent last Saturday installing them into the front landscaping. I love the extra sparkle it adds to the front of the house!

Craniofacial Report

Our trip to Seattle Children's Hospital ended up being quite discouraging. We arrived with a full morning of appointments planned and were looking forward to meeting her doctors and surgeons. Elisabeth is a new patient there and they had literally no medical history on her. So we started at the beginning, telling them about her different conditions, hospitalizations, etc. Of course, they were interested in seeing her most recent CT scan, and I had it in hand. Unfortunately, the people at Inland Imaging in Spokane had not properly loaded the scan onto the disc and the doctors in Seattle could not view the images of her brain that they needed.

"Can't you just call and have them send it to you electronically?" I asked.

"No, the systems don't connect, we have to have a disc hand delivered." says Mr. Plastic Surgeon.

"Well, why can't we send her in for another scan right now? They only take a few minutes." I suggest.

"We like to avoid giving these little ones too much radiation, and since we know a recent scan exists, we would rather wait to see it." replies Mr. P.S.

So no scan, no decisions. But they proceeded to examine Elisabeth's head anyway and concluded that yes, her skull has fused. No surprise there. So isn't that enough? Isn't the knowledge that the sutures have closed enough to schedule a date for surgery and resolve the problem? No, it's not that simple. The good doctors at Seattle Children's have a concern, and that concern is that they don't believe Elisabeth's brain is going to continue to grow. If they perform the surgery, they will enlarge the skull to provide adequate room for brain growth. If the brain does not grow, they have created a whole new problem.

Donald and I don't believe that this is the case. We have noticed her head growing in a very pointy and cone like shape towards the back. If her brain isn't growing, why has there been a change in head shape? Donald brought this fact up with the surgeon, and he agreed that it was a valid point.....but....we have to wait for the scan to arrive.

Wait.

Wait.

It seems to be such a common theme with Elisabeth. Ever since she was diagnosed with hydrocephalus when I was 16 weeks pregnant, everything has always been "wait and see". Sometimes I just want to know everything now. I want to know what to expect, I want to know how she will develop, I want to know if she'll learn to walk, I want to know if the seizures will stop, I want to know something now, I want to know something for certain.

One simple word, one wise word. Patience. I will be patient. I will take this one step at a time. Everything will happen in it's own due time. Patiently I will wait....

A smile as we wait for the doctor.

Lorelai found Mickey Mouse...she was in heaven.

Donald and Elisabeth.

There was a lot to look at, including beautiful gardens.

My favorite part of Seattle Children's...a supervised sibling play room. The girls made Olympic torches while we were in appointments.

A total MySpace shot, cheesy, I know.

You've got to love modern travel.

Warming my toesies.

The princess in her new throne...I mean carseat :)

Under the Weather

We made it back from Seattle, but I don't have the energy to go into details. My eye is still pink....very pink. And I'm aching all over. I'm going to take a day to mend, and then I'll fill you in on our visit to the craniofacial clinic.