Monday, September 29, 2008

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!


Friday, September 26, 2008

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?

Thursday, September 25, 2008

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...

Wednesday, September 24, 2008

Thoughts From My Other Half

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

Letters to Elisabeth


I wrote many letters to Elisabeth during my pregnancy; from the week I learned I was pregnant, to the day she was born. I thought it appropriate to write her one more on this, her 1st birthday. But first I will share with you just one of those letters from the past.

May 15, 2007

Dearest Elisabeth~

So much has changed since my last letter to you. On April 24th I went in for what I thought would be a routine ultrasound. Well, it wasn't routine. I heard the word hydrocephalus for the 1st time in my life. Now, 3 weeks later I can't imagine not knowing all I now know. They have told me how serious your condition is. I have had 3 ultrasounds. Each time your hydrocephalus has gotten progressively worse. They say that most likely you will not survive all of this. I have cried, worried, and wondered...but now I am at peace with what is happening.

I have faith in Heavenly Father and Jesus Christ. If you are meant to be here on Earth with our family, you will make it, no matter what the doctors predict. But I also know that perhaps you have work to do on the other side of the veil. If so, I bid you farewell for now. I am honored to be your mother and to have carried your sweet body and spirit within my womb. We are an eternal family Elisabeth. We have each other forever ~ how wonderful that is! I love you Elisabeth. Regardless of what the future holds, you are my miracle.

Your mother,

Lisa

*****************************************

September 24th, 2008


Dearest Elisabeth,

One year ago today you entered this world. It was the most miraculous day I have ever experienced. I relive those first moments of your life over and over in my mind. I felt joy beyond measure. You were alive, you were beautiful, you were mine.

As our 3rd daughter you completed our family in a lovely way. I often look at you and wonder how I got so lucky. Of all the mothers in the world, you came to me. A blessing so pure, so innocent, so perfect. I feel honored to have been chosen to be your mother and I promise that I will always care for you, protect you, and be your advocate.

You have taught me many lessons over the past 12 months. Lessons of bravery, persistence, self-confidence, service, and patience to name a few. But the greatest lesson you have taught me is in the simple joys of life. When we take you outside you kick your feet with excitement, and I realize how exhilarating it must be for you. The cool air on your face, the birds chirping, the smell of freshly cut grass. In the modern day in which we live these small moments are often lost, but you have reminded me to slow down and enjoy it all. Sometimes the biggest lessons in life are taught by the smallest people.

This past year has brought emotional highs and lows ~ but each unique experience has helped us grow and learn. And now I look forward to the years that await us. Years of discovery, growth, accomplishment, and love. I will be your eyes and help you navigate your way through life. We will travel this journey together, inseparable as mother and daughter.

Happy 1st Birthday little one.

With devotion,

Lisa

Tuesday, September 23, 2008

Celebrate!

Growing up I always wanted to be like my big sister...


...some things never change.


Happy Birthday Kristin!!

Monday, September 22, 2008

I Ran...

2 Miles!


I wanted to stop, take a break, catch my breath, rest my legs....but I wouldn't let myself. My motivation was knowing that I would run in the door and be able to say "I did it!" to Donald. So I kept going.

It was worth every exhausting step. Donald greeted me with cheers and a lovely rendition of the Rocky melody. "I always knew you could do it," he said.

Now I work towards 3...

Friday, September 19, 2008

The Love Between Sisters


Elisabeth had a very strong seizure this afternoon. There were several times during it that Alexandra said she was scared for her sister. After it had gone on for 10 minutes or so we decided it was time to pull out the diastat. It is a single dose medication that her neurologist had given us for situations like these. It is the same thing she would have been given in the hospital, but it saved us a trip to the E.R. Within minutes, she calmed down and returned to her normal self.

A little while later Alexandra came up to me while I was getting ready for work. I was incredibly moved by what she told me:

"If we weren't born yet, I would take her place so that she didn't have to be blind and have seizures. I am not joking Mom, I would take her place."

"I know you would," I replied with a smile.

Pure love.

Tagged

My dear friend Yasmine tagged me. The idea is to go take the following pictures, as is. That means no cleaning or fixing up. So here we go:

1. Kitchen Sink


2. Toilet (I opted for the children's)


3. Laundry Room


4. Refridgerator


5. Kids right now (after school snack)


6. Favorite Shoes


7. Favorite Room


8. Dream Vacation (Scotland has always been on my list)


9. My closet


10. Self Portrait



Happy Friday!

Thursday, September 18, 2008

A Few Updates:

11.5 months old

The call finally came. And it was the doctor himself, not a nurse passing on information. That was a good decision on their part. Finally some real communication.

We began the conversation by discussing my disapproval of how things have happened over the past month. He agreed that this must never happen again. I have his word that "this event will lead to something on [his] part" and that he will "make it [his] mission". And yes, those are exact quotes (I was taking notes). So hopefully no one else will have to go through the frustration that I faced. If some good can come of this, than I suppose it was worth it.

Now for the results:

The coronal, and sagittal sutures are not closed as they previously thought. This is a good thing. However, the metopic suture is sealed (but that is not completely uncommon for a baby her age). He also reported regression of the frontal skull bones and that the right half of her brain is significantly larger than the left.

What does all this mean? It means that nothing has to be done immediately. Even though her skull has not grown since birth, her brain is not under any pressure. They will repeat the CT scan in 4 months. If there has been brain growth but not skull growth (meaning that her brain would be getting a little cramped in there) they will operate. If there has been brain growth and skull growth....then we go out and celebrate!

The Ketogenic Diet:

Sadly, it appears that we will have to add this to our list of failed treatments. My post a few weeks back was a bit premature. She had a few good days and I jumped to the conclusion that the diet was working. I was sure it was going to work, absolutely sure. But alas, I don't think it was meant to be. Donald and I do believe that there has been a slight reduction in spasm frequency, but they still occur regularly.

We return to the neurologist in a few weeks to report back on her progress (or lack of). At that time I assume we will start discussing the next plan. I know that there is another medication that he wants to try, but Donald and I are hesitant to go with it. It has a 40% of reducing the spasms, but a 30% of making them worse. I don't like those odds. I am beginning to feel that there isn't a medication or treatment that will work. We face failure after failure. There is an epilepsy surgery, and I believe that it might be our best bet. I will start researching it today.

In other news:

We got the evaluation report back from the speech pathologist who came to our home several weeks ago. Elisabeth failed. Big time. For receptive language (how well she understands/responds) she is equivalent to a 2 month old. For expressive language (how well she communicates her wants/needs) she was equivalent to a newborn. She will be having a speech therapist come twice monthly to work with her.

This seems typical of what we are seeing developmentally from Elisabeth. She is somewhat stuck. At home she seems normal. But when we are out and about and observing other children her age it becomes apparent how far behind she is falling. Other 12 month old children are starting to walk, talk, explore, and feed themselves. They are leaving behind babyhood and entering the toddler years.

Sweet Elisabeth is just content. The calmest baby ever, with no ambition to learn of the world around her. Someday she will get there. I know that. Slowly but surely she will figure out that she can move, that she can talk, that she can eat. Someday.

But until that day comes I will hold her close. I will watch her sleeping soundly in her cradle. I will sing her lullaby's and take pictures of her cute little toes. I will enjoy folding pink onesies and take her on walks in her stroller. I will cherish having a baby. I will cherish the moments where she just wants to be cuddled close. After all...cuddly babies are my favorite kind.


Wednesday, September 17, 2008

Unacceptable

Seattle Children's Hospital has dropped the ball....and I will not stand for it. I feel sorry for the person that picked up my call yesterday. Usually I am mild mannered, but when it comes to the well being of my baby, I can be a bit outspoken. Here is my story:

If you will remember, we took Elisabeth to Seattle Children's on August 11th in regards to her craniosynostosis. It turned out to be a wasted 4 hour drive because the CT scan wouldn't load onto their computers. They wouldn't call and have it sent electronically because they claimed the computers weren't connected to other hospitals in the state (turns out they were wrong about that). So I asked them to send her in for a new CT scan. They would not. They insisted on waiting for a new disc to arrive from Spokane.

It is now 5 weeks and 2 days later. The surgeon still has not viewed her scan. I am frustrated! This is my child's brain we are talking about!!! Why are they being so negligent?? I call and call and it is near impossible to get these people motivated. They are the 8th ranked Children's hospital in America and the #1 on the west coast. How can they be so great....yet so terrible?

Yesterday I had had it. I called and spoke to a lady in the patient relations department. Miraculously (spoken with sarcasm) I received a phone call from the craniofacial department less than two hours later. Funny, they won't return my calls, but they sure do respond when the right people get on their case.

So anyways, when I talked to the nurse from the craniofacial center I pretty much let her have it. Being aggressive isn't one of my strong points, but I couldn't hold back. I told her that their lack of communication was completely unacceptable. She apologized and told me that the surgeon would be in surgery for the day but that she would have him look at Elisabeth's scan as soon as possible. "Does that mean I will hear from him by tomorrow?" I asked. "Hopefully" she replied.

The waiting game continues....but they are dealing with an angry Mama now. Poor them.

Tuesday, September 16, 2008

No Opportunity Wasted

I am a huge fan of The Amazing Race on CBS. So for Christmas a few years back my brother gave me the book No Opportunity Wasted written by the shows host, Phil Keoghan. The book is a motivational tool that inspires you to conquer your fears, tackle your goals, and live life to its fullest. At the end of the book it asks the reader to create their own N.O.W. list. So I did.


One of my goals on that list was to be able to run a mile. To many that is no big deal. In fact, I have several friends that are avid runners. They run two and three times that much every day. But me, I have never been physically fit, I have never played sports, and I most certainly never ran.

In May my older sister asked if I would run a half marathon with her next Spring. I quickly agreed, realizing that this was just the motivation I needed to get moving. For the past 5 weeks I have been diligently participating in a 'Couch to 5K' running plan. I was pitiful at the beginning but have been amazed at how quickly my body has adapted to the routine.

Now for the exciting news: a few days ago I ran a mile!!! No walking, no stopping. And it wasn't even that hard. I feel a great sense of accomplishment. And even more so I feel a drive to keep working, running harder and running longer.

So that's one item I can cross of my N.O.W. list, and boy does it feel good. On to the next goal...

Monday, September 15, 2008

One Word

I decided to think of a single word to describe my brother...


...and I came up with the perfect one.

Happy Birthday
Michael!

Friday, September 12, 2008

An Invitation

Elisabeth is turning
1 year old!

Please join us to celebrate on
Saturday the 27th of September.

Please call or email me for time and location details.

**No gifts please.
However, Elisabeth
will be accepting
hugs and kisses!

It's Party Time!

I have 3 little girls.
My 3 little girls have 3 birthdays
within 3 weeks of each other.

That means that this Mommy has 3 parties to plan.
Time to start brainstorming...

Thursday, September 11, 2008

Attention Musicians:

Mid-Columbia Symphony
Announces 2008-2009 Auditions For:

Violin I
Violin II – Principal (one year substitute)
Double Bass
Oboe II
Bassoon II
French Horn – Principal
French Horn III
Trumpet III
Harp

Saturday, September 27, 2008
At the Three Rivers Convention Center 7016 W. Grandridge Blvd.
Kennewick, WA 99336


The Mid-Columbia Symphony presents four regular season concerts from October 2008 through May 2009. Compensation is on a per-service basis. Orchestra members traveling from outside of the Tri-Cities area may be eligible for partial reimbursement of travel expenses.

To schedule an audition appointment time, please contact the Mid-Columbia Symphony concert manager Justin Raffa at 509-943-6602 or cmgr@midcolumbiasymphony.org

Visit http://www.midcolumbiasymphony.org/ for more information

Wednesday, September 10, 2008

Penmanship

My grandmother had the most beautiful penmanship. Elegant, sophisticated, fluid. I always admired it. Some of my most precious keepsakes are the cards and notes that she gave me. She died a month before Lorelai was born, but she hand wrote a little note to her before she passed away. I know that Lorelai will grow to treasure that little piece of paper.

I can remember my Grandma telling stories of her grade school years. She always emphasized the fact that they taught actual penmanship back then. Do they even care much about that anymore? Sadly, I don't think so.


My own penmanship has begun to slip. I've noticed it getting sloppier and sloppier. It's not that I am unable to write in a beautiful fashion, it's just that I don't take the time to do it. So my new goal is to leave behind the scribbles and start writing pretty. There is something about beautiful handwriting that I admire, so it's worth it to me to make the effort. Pen and paper...here I come.

Tuesday, September 9, 2008

Elisabeth ~ 11 months

These were actually taken a few weeks ago, but there were some problems getting the pictures sent to us. So here they are...better late than never!







Only 2 more weeks till the big '1' !


Monday, September 8, 2008

Thoughts on Contentment

The secret of
contentment
is knowing how to
enjoy what you have,
and to be able to
lose all desire
for things beyond your
reach.

Author: Lin Yu-t'ang

What a blessing it is to be content.

To be thankful for what you have.

To be appreciative of your many blessings.

I firmly believe that happiness is found when contentment is reached.

Saturday, September 6, 2008

Thanks For The Memories

After 2 1/2 years of dedicated service to our family, our camera has sadly gone kaput. We estimate that it took somewhere between 20,000 and 30,000 pictures. Here are some of my favorite photographs that our little Polaroid took:










Cousin Peter or Benjamin (twins that I can't tell apart)

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