Whew...

*3 Daughters*

*3 Birthdays*

*3 Parties*

*3 Weeks*

After hosting 2 pastel parties in a row, we decided to change things up a bit. So we threw a Halloween Bash for Lorelai's 4th birthday. Take a look:

The birthday girl in her Halloween best.

We hung these paper lanterns in place of traditional balloons.

Cupcakes for everyone.

Party goods in black and orange.

Goody bags filled with glow sticks, pencils, and stickers.

This enormous spider added just the right touch of Halloween fright...the children loved him!

A prize bucket filled with an assortment of Halloween treats.

Elisabeth was festive in her candy corn cap.

A fun game of pin the nose on the pumpkin.

Followed by a jack-o-lantern pinata.

Almost all the kids had a whack at it before it split.

Lorelai was spoiled with wonderful gifts.

And made sweet wishes as she blew out her candles.

A perfect day

for a

perfect 4 year old.

4 Years Old

She loves the color yellow,

is devoted to her baby sister,

and has ringlets that rival Cindy Brady's.

This girl's got it all!

Birthday wishes

to my sweet Lorelai Leigh.

3 Miles

Harold M. Abrahams: If I can't win, I won't run!

Sybil Gordon: If you don't run, you can't win.

~Chariots of Fire

I did it. Oh the feeling of accomplishment! Now I think I'll go rent Chariots of Fire. I haven't seen it in years! And maybe, just maybe, it will inspire me to work towards 4 miles. Do I dare?

Yes.

Quality Control

Remember my rant about Seattle Children's Hospital and the 5 weeks that it took the surgeon to view Elisabeth's scan? Well, my complaining did make a difference. Here is an excerpt from a letter I received in the mail yesterday:

First, I want to apologize for the unfortunate experience you had regarding the problems with Elisabeth's CT. Dr. Cunningham carefully documented your concern and I added notes from our conversation. I will briefly outline the steps we have taken to address your concerns.

It was determined that the data had been transferred electronically to Seattle Children's from Spokane, but the physicians were not notified. This matter was forwarded to Chuck Fritz, Director of Radiology and Ray Ramoso, Quality Improvement Operations Manager for Radiology. They are investigating ways to improve their system to avoid errors like this from happening in the future. We apologize for the delay and any undue concern it may have caused.

Now if I could get them to stop scheduling emergency surgeries 2 months in advance...

So enough about that...on to my drawing. There were multiple people interested in winning the symphony tickets. After putting all the names into a hat we had Lorelai pull the winning name. And the winner is Tiffani!

Congrats Tiffani! Send me an email with your address and I'll pop them in the mail tomorrow (I am picking them up at rehearsal tonight). Enjoy the concert!

Tickets Anyone??

I have returned to play violin with the Mid-Columbia Symphony after a 1 year leave of absence to care for Elisabeth. Rehearsals started up last week for the new season. It was wonderful! I was reminded of just how much I love the violin and how grateful I am to be a member of the symphony. It's a welcome change to my day to day life of laundry, cooking, and changing diapers.

As a seated musician with the symphony I am given comp tickets for each performance. In the years before we were parents, Donald would take one and come watch the show. But alas, those days are long gone and my dear husband will be home tending to the children while I play some Gershwin.

Which leads me to the following question: Do any of you want 2 silver tickets (a $50 value) for our upcoming concert? If so, just leave a comment letting me know you are interested. If more than one person request them, I will simply draw a name out of a hat.

Here are the concert details:

Celebrate America

October 25, 2008, 8 pm

Three Rivers Convention Center, Kennewick, WA

Ives: Variations on "America"

Barber: Knoxville: Summer of 1915 ~ Soloist: Kari Ragan

Gershwin: Preludes 1, 2 & 3

Copland: Rodeo: Four Dance Episodes

Sibling Rivalry

To read a very heated and quite entertaining debate between Donald and his sister, click here, and then scroll down to the comment section. Enjoy!

"Why Am I All Blue?"

We were out visiting a friend last night when I looked down and noticed that I was covered in blue. Wet...drippy...sticky blue.

"What is this???" I ask, a bit confused.

"Uh oh," replied Donald.

Apparently he heisted a popsicle from his parents freezer and stashed it away in my purse. An OK plan...except that he forgot about it.

We bought...

We took the girls out this weekend and loaded the van up with pumpkins. An assortment of fat ones, skinny ones, tall ones, and short ones. Some will have the honor of being transformed into jack-o-lanterns in just a few weeks. Others will decorate our front porch for the Thanksgiving season. I always hide those ones away the night of Halloween to save them from the dreadful fate of being smashed....so sad.

In other news, Alexandra enjoyed both birthday parties on Saturday. We decided that the best choice was to have her attend the first half of one, and the second half of the other. Both parents were quite understanding, as were the children. Thanks to all of you for your wonderful suggestions!

Happy Monday!

Making a List

It's time to start shopping. A little early, I know...but that's the way I function. When December 1st rolls around I aim to have all of my purchases made. That way I can spend my holiday season baking, singing carols, trimming the tree, wrapping gifts, and watching my favorite old Christmas movies without the stress of a huge shopping list weighing on my mind. And better yet, I still have my job at Hallmark (9 years now!)...which means I can enjoy a taste of the Christmas hustle bustle, without actually being a part of it. Make sense??

Ready, Set, Shop!

Minor Dilemma

Alexandra came home from school yesterday with 2 birthday invitations. Both girls are in her class, both are having parties this Saturday, both at the same time, and both came to Alexandra's party last Saturday.

So what do I do? She can't go to both, but it seems rude to choose one over another.

Any ideas???

It Arrived!

Elisabeth's birthday present was a BOB Revolution Stroller 2008. It is complete LUXURY! I am already wondering how I ever got along without it! It rides smoothly, maneuvers effortlessly around corners, and has a weight capacity of 70 lbs. Sweet Elisabeth will enjoy her new jogger for years to come.

The good life.

Seattle Strikes Again

I received a call from a scheduler at Seattle Children's Hospital. Here is how our conversation went:

S.C. ~ Hi, this is Mary calling from Seattle Children's Hospital in regards to your December 1st CT scan and appointments with Dr. Cunningham and Dr. Bergfeld.

Me ~ Hi.

S.C. ~ As it turns out, Dr. Bergfeld has just been scheduled for an emergency surgery that day and will not be able to meet with you. However, Dr. Cunningham can still see Elisabeth.

Me ~ {slight pause} An emergency surgery?

S.C. ~ Yes

Me ~ That doesn't make any sense. {another slight pause} Wouldn't an emergency surgery need to be happening now????

S.C. ~ Well...it's emergency in that it can't wait till January or February.

Hmmm...it can wait nearly 2 months but not a half hour more so that I can keep my appointment?? I chose not to argue. Needless to say, we won't be seeing Dr. Bergfeld that day. Strike two for Seattle Children's Hospital.

**To read about 'strike one' click here.

Paper Dolls

Who am I kidding...these girls are WAY more fun than paper dolls!

And for the record, birthday party #2 was a smashing success. We decorated with lots of pink and green, and kept 15 little girls entertained with games, cake, and a treasure hunt.

Sunday Afternoon

The Birthday Girl

Alexandra

This darling girl made me a mother 6 years ago today.

She is everything I ever dreamed of...down to the knee high socks.

Happy Birthday sweet daughter of mine.

Hats From Ohio

The Internet has been a tremendous resource for me as I have dealt with Elisabeth's many medical issues. Not only can I research anything...but I can connect with others who have walked in my same shoes. I have met the most incredible women who have lent me support, advice, and understanding. What a blessing it is to live in a day and age when advanced technologies allow us to come together from around the globe.

One of the people that I have met online is my dear friend Kristen. Her daughter, Cayman, was born this past March with hydrocephalus. Her strength, faith, and intuition as a mother always inspire me. You may remember this post from earlier this year. Kristen had mailed me the most beautiful hat that she had knitted for Elisabeth. It was gorgeous! Well, lucky me, she sent another package in the mail yesterday. And guess what was in it??? 4 lovely handmade hats for my girls. Take a look:








Kristen just recently started up a new blog called Just Five More Minutes where she gives tutorials on crocheting flowers and displays her handiwork. Go check it out!

Thanks Kristen!

My girls LOVE their new hats!

(picture of Elisabeth in the candy corn hat to follow soon...she was just so sleepy!)

Happily Into Autumn

It's here...October. My favorite month by far. The cool, crisp air. The vibrant colors. Trick-or-treating. Decorated pumpkins. Baked goods in abundance. Fall. I am cherishing it.

Last week I baked these Twice-Baked Sweet Potatoes. I found the recipe in Kraft's Food and Family magazine and they screamed Autumn to me. I served them with warm ham and green salad. Yum. Donald and I enjoyed them...even if our children did not.

For those of you wondering about Elisabeth's appointment yesterday, here is the update:

We have decided to start her on a medication called Depakote. The only serious side effect is the possibility of liver damage. A bit scary, but a risk we have to take at this point. We will begin the medication now, but wait 4 weeks to begin weaning her off of the ketogenic diet. Her neurologist didn't want her little body to go through too many changes at once...and I agree.

I did ask about the possibility of epilepsy surgery. Unfortunately, he does not think that she is a good candidate. Here is why:

There are two ways of performing this surgery. One is to do what is called a corpus callosotomy. This type of surgery disconnects the two sides (hemispheres) of the brain. The corpus callosum happens to be one of the parts of the brain that Elisabeth is missing, so she very well can't have this procedure done.

The second method is one where the surgeon removes the specific area of brain tissue where the seizures begin. The problem is that Elisabeth's brain is abnormal in its entirety, and the chances of pinpointing one particular spot that is causing the trouble is slim.

So Depakote it is (for now at least). Keep your fingers crossed...maybe this is the one!

Losing Ground

May 4, 2008 was the first day that I noticed Elisabeth doing something odd...almost like a hiccup. It was a Sunday and we were at my in-laws for dinner. I called a few people in to watch her, but everyone was quite sure that I was creating something out of nothing. Well, those 'hiccups' grew and grew over the next few weeks. She was diagnosed with Infantile Spasms at the end of that very month.

Since the spasms began we have seen her progress very little. This is to be expected of a baby with Infantile Spasms. But even more characteristic of these devastating spasms is that children move backwards developmentally. It is heartbreaking...especially for a little baby like Elisabeth who has fought so hard to hit each milestone.

Sadly, it occurred to me last night that I haven't seen her roll over lately. I asked Donald about it and he hadn't either. I've thought and thought, and I can't remember the last time I saw her roll. It must have been a week or so...maybe longer.

Looking back in my blog archive today I found a post that I had written on May 5 titled 'Rolling Over'. How ironic that it was the very day after the spasms started. Now, after almost 5 months of searching for a cure, the spasms have robbed her of the ability to roll. It is tragic.

Elisabeth and I are off on a trip to the neurologist today. I think it's time to officially call it quits on the ketogenic diet. I cannot waste time hoping that it will miraculously start working when my baby's brain is being destroyed. Think of us today, and pray that her doctor may be guided towards the right solution. Time is of the essence.

The Celebration

We hosted an Open House in honor of Elisabeth's 1st Birthday. Many friends and loved ones joined us to celebrate her sweet life. Here is a peek at her party:

We went with a lavender and green theme and used keepsakes from her first year to create displays.

I hung her blessing gown (which was also worn by me when I was an infant).

A guest book table adorned with her baby booties and ultrasound pictures.

Delicious fruit punch.

Flowers.

Lavender plates and utensils accented with 1st Birthday napkins.

A scrumptious buffet.

One of my favorite decorations: I took all of her bibs and hung them in the windows with clothes pins.

More fresh flowers (my house still smells lovely).

A game for our guests: We hung all 24 of Elisabeth's 1st year portraits on the wall...

...and people tried to put them in order from birth to today (not so easy!).

The best part of the whole weekend was having my Mom visit from California. She completely spoiled my girls and we loved having her stay with us. As soon as we dropped her off at the airport Lorelai said, "well that was fun having her come to our house".

Come again soon Mom!

We Laughed and Laughed...

I ditched out of my orchestra rehearsal 30 minutes early last night to make it home in time for the season premier of The Office. I am so glad I did! We invited over some of our favorite friends, ate a yummy dessert, and enjoyed reuniting with Dwight, Michael, and the rest of the gang.

What did you think of last nights episode?

Yesterday

So her first birthday was spent in a place she is very familiar with...the hospital. Ugghh.

I noticed early in the day that she was doing something very strange. She would go into a non-responsive state and then her eye lids would close and start rapidly blinking and twitching. It would last for anywhere from a few seconds to 15 seconds and then she would snap out of it and be totally normal. The first time I thought it was just weird, and then it happened again...and again...and again. Some new type of seizure I was sure.

So we went and got her one year pictures taken, and then we made it home in time for her therapy session. Finally I had a chance to call the neurologist. He recommended I take her straight to the emergency room...where I spent the next 4 hours.

She is OK, but the new seizures are still happening frequently. They are quite different from anything I had seen before. She has an appointment with the neurologist next week. In the past 24 hours she has had severe episodes of 3 types of seizures. I think it's safe to say that the diet is definitely not working.

Aside from the hospital trip we had a wonderful day celebrating our little miracle. Thanks to everyone who left comments of love and support. It was truly a joyous day for our family. I hope that many of you will be able to join us to celebrate this Saturday. Please email or call me for more specific party details. If you didn't see the invitation, click here.

Snuggling with big sister in the hospital bed.

Everything is better when Daddy is there...

Thoughts From My Other Half

To read my husbands recollections of a year ago, click here.