Halloween 2008

Pumpkins were carved...






We visited our friends at the retirement home...










They giggled with cousins...

The front walkway glowed...

"And they're off..."

Trick-or-Treat!

It's a magical night to be a child. Dressing up, exploring the neighborhood after dark, and collecting an enormous load of candy. Dorothy and Glinda are excited (and so is Donald)!

As for me and Elisabeth...we will stay home and enjoy the warmth of the fireplace along with a good Halloween movie. And of course we will greet all the ghosts, goblins, cowboys, and fairy princesses that come knocking at our door. I can't wait!

So Long, Farewell...

I am having issues. Last night we sold Elisabeth's baby carrier/stroller combo. It wasn't needed anymore. She outgrew the carrier months ago, and the stroller hasn't been used since Elisabeth got her new jogger. So it made sense. But I am sad...and this is SO not like me. I have never been sentimental or clingy. My theory is "if it isn't being used...get rid of it".

So what's my problem? Let me tell you. Selling the stroller meant that Elisabeth {my final baby} is growing up {fast}. And that my friends is the real issue here.

But life moves on and so must I.

I will title this chapter of my life The Baby Years and always look back on it with the fondest of memories. And I will continue to cherish what time I have left in The Baby Years before the chapter comes to a close. I will sing her lullaby's as I gently rock her cradle {she's still not in a crib}, I will enjoy holding her close as she drinks her bottle {no solids for this one}, and I will be happy that my last baby gets to be a baby a little longer than most.

"Don't cry because it's over, smile because it happened."

~Dr. Seuss

**Elisabeth and I are heading over to Spokane today for an EEG and visit to the neurologist. I will be glad to report all the progress she's made, but sad to tell him that we still haven't resolved her epilepsy issues.

Ruby Red Slippers

As Alexandra lined up with her schoolmates before the bell rang I saw her proudly pull the legs of her pants up so everyone could get a good look at her new sparkly footwear. One girl crouched down low for a close examination. Oh the fascination!

I don't think those shoes will be leaving her feet anytime soon.

Shhh...don't tell

It's 5:48 am. The girls are snug in their beds, sound asleep. I have quietly tip-toed into their bedroom and carefully laid their much anticipated Halloween costumes next to their beds {I have been secretly getting them ready this past week}.

In about an hour I'll hear squeals of joy as they wake up and discover their surprise. These are the moments I cherish; watching my children experience the magic and whimsy of childhood.

Want a preview of what my sweet darlings will be dressed like on Friday night???

Can you guess who will be who?

Update:

It was an innocent murmur. Hurray!

**smiles**

Next test on the agenda: EEG for Elisabeth this Thursday.

Results Today...I Hope

Brave little Lorelai getting her EKG.

Also...she is going to the audiologist later this week in regards to the holes in her eardrum.

Saturday's Schedule

Yesterday's field trip to the pumpkin patch.

• Early morning run.
• Photo shoot with the symphony.
• Rehearsal for tonight's concert.
• The girls have a practice for tomorrow's Primary Program.
• Neighborhood Fall Festival.
• Halloween Party at a friend's house.
• Autumn festival at the elementary school.
• Symphony concert.

We'll be busy...how about you?

Back on Track

Nearly 3 weeks ago Elisabeth started a new medication called Depakote. It has worked wonders! Here is a sampling of how she has progressed over the last few weeks:

• Started smiling and laughing again.
• Uses her left hand {never used it before}.
• Blows raspberries.
• Discovered her voice {she rarely made noise previously}.
• Re-learned how to roll.
• Can sit upright for 10-20 seconds before starting to tip.
• Puts pressure on her legs.
• Can find a toy next to her on the ground and pick it up.

We are still seeing clusters of the infantile spasms , and quite a few absence seizures, but regardless, the medicine seems to have stimulated major brain activity. Yippee! Oh yes, one more thing...Elisabeth is 13 months old today!

Thank you Depakote!!

Notice how she puts her hand on Donald's face...this is her way of 'seeing' who she is with.

Letter to the Editor

My husband reads the newspaper. From the front page to the last. Me, never. So I count on him to keep me up to date and informed. Well, a few days ago he came home and read me a letter to the editor that he knew I would find interesting. Here is what it said:

I was extremely disappointed to see the Herald's editorial of Sept. 28 supporting Initiative 1000, the so-called "Death with Dignity" initiative.

Physicians have accepted a calling to provide care, healing, comfort and compassion. Assisting in suicide is a complete reversal of the proper physician role toward patients. We are in deep trouble when we must choose our physicians and healers on the basis of whether they will enable us to live or enable us to die. Once patients are allowed to commit suicide, there is decreased incentive for physicians to provide the care that can result in true death with dignity.

Interestingly, studies have shown that physical pain is often not the predominant motivation for patients opting for assisted suicide. Rather, understandable fears such as loss of autonomy, dignity and enjoyable life events are high on the list for people choosing assisted suicide.
Regarding any type of pain, let's emphasize killing the pain and not the patient.

I would agree with the Herald on one point: Initiative 1000 is certainly mislabeled. It's not a "Right to Die," it's a right to kill, and it's a horrible idea.

We as a profession should never participate in it, and we as a society should never condone it.

A well written letter. A letter I agree with. So why is this letter so interesting to me?? This letter happens to be written by the same physician who I was referred to when Elisabeth was diagnosed with hydrocephalus at 16 weeks. The same physician who said many parents aren't prepared to 'deal' with a child like Elisabeth. The same physician who asked if I wanted to continue on with the pregnancy knowing the baby was destined for a life of handicaps and surgeries. The same physician who thought I should terminate Elisabeth.

Does anyone else see the contradiction here??

More Medical Worries

I took Lorelai in for her 4 year wellness exam yesterday. You know...temperature, weight, height, lollipop, and 'see you next year'. Nope. Not that simple. She has a systolic heart murmur. She is going in for an EKG and chest X-ray today that will be sent over to the cardiologist in Spokane.

This totally threw me. There is not supposed to be anything wrong with Lorelai. I already have Elisabeth. Isn't there some sort of 'one child per family' rule when it comes to children with health problems?

I know that it could be nothing. I hope that it is nothing. But I also know that it could be something...and that is what worries me.

But I mustn't get ahead of myself. She'll have her test done and we'll wait for results. Wait, wait...a common theme as of late...

***Oh yes, Lorelai also has holes in her right tympanic membrane {ear drum}. I don't know what that means yet. I'm going to focus on the heart issue first.

Autumn Cleaning

Once every season I make a clean sweep through my house. I deep clean, organize, and simplify. When done quarterly, the task doesn't seem too overwhelming. And I love the way it makes me feel. An organized home is a happy home.

So I am dedicating this week to getting things in order. I have something big coming up {more on that next week} and I want to have everything running smoothly on the home front.

Off to work I go...

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.