Monday, June 30, 2008
And now I'll humor you with a picture of me. Note: That was a very thick, heavy skirt, not the best for a hot summer day.
Sunday, June 29, 2008
This morning Alexandra said,
"There is something that I know about Elisabeth."
"What's that?" I said.
"She is not ordinary."
To which I replied, "You're right, she's extraordinary."
Susan, over at Non-Linear Thinking just posted a "bloggers quiz". Go take it and see how you score.
Friday, June 27, 2008
Where is the most lovely place that you've traveled to??
**I enhanced this post by adding some songs from The Sound of Music to my playlist. After all....they are singing about the hills of Austria! Also, The Sound of Music happens to be one of my two FAVORITE movies - but that's a whole other post.
Thursday, June 26, 2008
Tuesday, June 24, 2008
Three little girls are bathed and tucked into bed.
Now I have a few hours to work some magic.
Clothes will be washed, dishes will be scrubbed, toys will be picked up, tables will be polished.
When we awake tomorrow morning, the chores will be done and my three little girls and I will play.
It took the girls about 45 minutes in the ER to become completely bored and they started begging for me to call Grandma. So we did, and Grandma arrived shortly thereafter. To read about their adventures at Grandma's click here.
Elisabeth is fine. Usually I would not have rushed her to the hospital. I have become quite accustomed to seeing seizures, and even more so, the spasms. But both together, and for almost half an hour....that was too much to ignore.
Now for the happy news...
She will spend her day doing two of the things that she is most familiar with. A photo shoot, and a trip to the doctor. She won't mind the pictures, but I do think she'll mind the pediatricians office. Because of the ACTH therapy she has to get all of her immunizations over again! Not in one day of course, but still, that's a lot of catching up to do. Poor baby girl.
Keep a happy thought today!!
Monday, June 23, 2008
It was just about time to tuck her into her cradle for the night. She was getting slightly fussy....a sure sign that she's tired. Donald was watching TV and saw that the movie Amadeus was on one of the channels. So he switched over to it and our family room was filled with the sounds of Mozart's The Magic Flute. Immediately Elisabeth stopped fussing. Not only did she stop fussing, but she started dancing around (in an almost-9-month-old sort of way). And she listened. You could see her focused so intently on the sounds she was hearing.
I am a proud Mama!
So, of course I had to pick out something composed by Mozart as her musical selection of the week. Enjoy listening to Eine Kleine Nachtmusik......I know Elisabeth will!
Saturday, June 21, 2008
Friday, June 20, 2008
- The girls enjoyed watching The Secret Garden together yesterday. Well, the older two watched and Elisabeth enjoyed snuggling between her two big sisters. Nothing brings me more joy than seeing all my daughters together.
- Donald got busy grilling last night. Needless to say, our dinner was scrumptious!
Thursday, June 19, 2008
As I have mentioned previously, the ACTH therapy did not work for Elisabeth. This was a bit of a blow since there was an 80% success rate. Her neurologist wanted to see her again immediately to discuss our next treatment plan, so we traveled to Spokane on Tuesday.
After a bit of discussion we decided to start Elisabeth on a medication called Zonisamide. Zonisamide has not been studied much and is only believed to stop the spasms 30% of the time. It's not a very encouraging number, but it's worth a try. The other option we discussed is something called Topimax. Topimax has more severe side effects than the Zonisamide and a 43% chance of reducing (not stopping) the seizures. Also, Topimax has a 30% chance of making the seizures worse. As you can see, we want to postpone that medication until there are no other options available.
Right before I left, the neurologist handed me a stack of papers that he had copied. It was a current review by Dr. Donald Shields, who is known for his knowledge of infantile spasms. I took the time to glance through it before I started on my drive home. There were a few lines that Elisabeth's doctor had highlighted. It said this:
"Infantile spasms is associated with a significant risk of mortality and morbidity. Nearly one third of patients die, many in the first 3 years of life."
I cried the whole way home. This was way scarier than the 1 in 20 number that I had read on the Internet a few weeks back. And the fact that Elisabeth didn't respond to the most successful treatment available (ACTH) makes her odds of survival much, much smaller.
I am trying not to let my worries get ahead of me. We are just starting the new treatment, and while it does not have a high success rate, I will not give up on it just yet. Elisabeth has changed my life in a most beautiful way. She inspires me to be a better person. She encourages me to be brave. She helps me identify the simplest joys in life. Elisabeth is the truest meaning of the word blessing. I will continue to cherish my time with Elisabeth, each and every moment. Families are forever.
Wednesday, June 18, 2008
For those 2 hours I could think of nothing but this man, his sweet wife, their 2 sons, and their daughter on the way. I don't know if Sean will make it back to my blog again...but in case he does, this is for him.
Let me start by expressing my sincerest condolences on the loss of your little boy. My heart aches for you and your family. I cannot imagine any greater pain than that of losing a child. It is a feeling that I have not felt in its entirety, but I have felt the anguish of being told that my child would die. That pain alone is enormous, but I am sure no where near what you have felt during the past 7 months.
I am also deeply sorry for the results of the recent ultrasound. It brings back very vivid memories and feelings. It was just one year ago that I was in your wife's shoes. Trying to deal with the emotions that come with learning that your unborn child has birth defects. There are so many questions "why?" "what?" "how?" "when?". I remember being so overwhelmed with the feeling of loss...but I still needed to face the reality of the situation. There was no time for mourning.
I gave a great deal of thought yesterday to how I have dealt with my experiences. The ups, the downs, the questions, even the answers. Here were some of my thoughts:
My immediate reaction to dealing with my circumstance was to get informed. I scoured the Internet for answers (like you are). I wanted to understand everything there was to know about hydrocephalus. I wanted to know the best treatments. I wanted to know the best doctors. I wanted to know that no matter what the outcome for my child I had done everything in my power to provide the best medical care available. Research brought a sense of peace as I came to understand my baby and the way that she was developing. Since her birth she has been diagnosed with a number of other birth defects - including the craniosynostosis. I have faced each of these the same....by understanding the facts and learning what I could do to make her life the best it could be.
There was one other aspect of my life that I realized I had control over. And that was control over my attitude. I knew that negative feelings could do nothing to better my baby. I tried keep a positive outlook despite the grim circumstance. At that point I didn't expect her to live, but I decided to be grateful for the time I had with her in the womb. I tried to focus on her just being my baby and to enjoy each and every kick. Since she has been born I have made every effort to fill her little world with peace, comfort, music, love, and a sense of safety. At this point her entire world revolves around our family and we as a family are trying to provide the very best for her. She is a little piece of heaven in our home.
Sean, I know that none of this can take away from the anguish that you and your wife are feeling. But I hope that it helps in some very small way to know that there are others who wish you well. I am so glad that you found my blog. I have chronicled my dealings with Elisabeth with the hope that my experiences might provide answers and maybe even comfort to someone else. Please continue to visit. And please feel free to email me (firstname.lastname@example.org) with any other questions (as well as updates....I want to hear how you daughter is doing!)
Tomorrow I will go into detail about Elisabeth's appointment yesterday. The news that I received has been hard for me to cope with. I think I need another day to digest what I learned. Till tomorrow....
Tuesday, June 17, 2008
"Most people measure their happiness in terms of physical pleasure and material possession. Could they win some visible goal which they have set on the horizon, how happy they could be! Lacking this gift or that circumstance, they would be miserable. If happiness is to be so measured, I who cannot hear or see have every reason to sit in a corner with folded hands and weep. If I am happy in spite of my deprivations, if my happiness is so deep that it is a faith, so thoughtful that it becomes a philosophy of life, — if, in short, I am an optimist, my testimony to the creed of optimism is worth hearing."
It really goes to show that life is what you make it. No matter what trials or circumstances we face, there is good to be found. Oh, how I hope that my Elisabeth will follow the example of this great woman! That she will discover her blessings before her hardships. That she will focus on her abilities rather than her handicaps. I wish for her to realize that her life is full of opportunity. And I hope that she will find happiness all along the way.
Monday, June 16, 2008
A practice twirl...
Lorelai, at the front of the line.
Elisabeth thoroughly enjoyed the warm sun and cheerful music.
After the recital we headed over to the park for Movies on the River. This weekend they were showing "Horton Hears a Who".
Lorelai, looking a bit mischievous....
There were free carnival games for the children to play before the show.
Me and my girls, ready for the movie.
Father's Day 2008.
The girls showered Donald with gifts.
Donald and Baby Cakes out watering the lawn.
Lorelai and Alexandra put on swimming suits and had some backyard fun. Garden hose + Slide = Waterslide
After a delicious dinner at my in-laws, we roasted marshmallows around the fire.
Donald and our 3 daughters.
Now make a funny face!
Sunday, June 15, 2008
Our children are blessed to have you as a father.
Saturday, June 14, 2008
- Finished her ACTH therapy.
- While the ACTH is 80% successful, my dear little one was not part of that 80%.
- We return to Spokane next week to discuss further options.
- She is officially registered for kindergarten!
- Composed her first violin etude.
- Completed her first semester of ballet classes.
- Her recital is today! I'll make sure to post pictures soon.
- The weather finally warmed up and the wind died down.
- I am giddy with excitement as I think towards all the fun that awaits us in the coming months!
- And because it finally warmed up, my dear Elisabeth was finally able to wear this sweet number:
- Thanks again Susan, it's the perfect summer dress for Elisabeth.
- Donald's cousin Jennifer sent a little surprise in the mail. Aren't surprise packages the best? Anyways, she sent a book on CD for me to enjoy during my drives to and from Spokane. Thanks Jennifer! I'll listen to it this week, can't wait!
Friday, June 13, 2008
We played games,