Wednesday, September 30, 2009
Tuesday, September 29, 2009
Before long, Lorelai, who is never one to sit on the sidelines, joined in the fun. (even though she isn't quite school-age yet).
She and Alexandra ran hand in hand. Team purple.
And then they decided to walk a bit.
The finish line.
A success indeed.
Monday, September 28, 2009
Flower pom-pom's decorated the gazebo.
All the children helped open Elisabeth's gifts.
(Elisabeth is never one to hog all the fun).
And then they were off again to play....
Sunday, September 27, 2009
Tonight on CBS @ 8:00
The Amazing Race (along with Gilmore Girls and The Patty Duke Show) is one of my three favorite television shows - of all time. Seriously, I have watched every episode of every season. I sometimes fantasize about how much fun it would be to be on the show and race around the world....then I come back to reality and realize that I would never make it. My sister, Jennifer, however....she would do great. (hint, hint Jenn....turn in an audition tape). Anyways, enjoy the show tonight!
If you want to join my group on The Amazing Race Fantasy (at CBS.com) just email me.
Yes, I'm obsessed.
Friday, September 25, 2009
Because Elisabeth doesn't understand much about birthdays and presents (much less how to tear into a present), her big sisters so generously offered to open her gifts for her.
They were careful to show her each and every one.
(which touched my heart)
I sang 'Happy Birthday' to Elisabeth a gazillion times yesterday.
And I pampered her.
And she was treated like a queen.
I wonder if she wondered what all the fuss was about?
Thursday, September 24, 2009
It's been 2 years since Elisabeth entered the world. That was the greatest day of my life. The joy I felt was so incredibly strong that I am quite sure I will never find words to describe it.
You see, I [emotionally] lost her once. They told me she would never live...and I believed them. At only 16 weeks gestation the ventricles in her brain were almost the size of a full term baby. Keeping with that rate of growth her survival was inconceivable.
I remember during one of those first appointments, the heartache I felt when I asked the doctor if there was a chance things could change for the better; if perhaps her body could correct this problem. And I'll never forget him looking at me and saying, "I believe in miracles, but...." and he let his voice trail off to nothing.
At that moment I felt the most agonizing pain that I have ever experienced. For the first time, I understood what heartache was. And with a heavy heart I carried on....finding a careful balance between acceptance and hope.
So on the morning of September 24, 2007, when I saw my baby for the first time, and heard her cry, and felt her soft skin.....the joy I experienced.....is simply indescribable. There was no sorrow that day; no worry about surgeries or handicaps or other things that the future would hold for her. That day was pure and good. It was a day where hope became a reality. It was the day I witnessed a miracle.
Happy 2nd Birthday
Wednesday, September 23, 2009
So the girls went as they were.
And I thought they made a darling pair.
Also....guess what? Elisabeth's new medication is being delivered to our home tomorrow! I can't believe how quick this is all happening. I got a call yesterday from S.H.A.R.E. (Support, Help, And Resourses for Elipepsy - we had to register with them in order to start Elisabeth on the Sabril) Anyways, they recieved all the paperwork and are sending out the medicine ASAP. Elisabeth's eye exam is scheduled for October 7, which falls within the 4 weeks of her start date, so everything just fell into place. We are so, so excited!
Also....a happy birthday to my sister, Kristin!!!
Tuesday, September 22, 2009
I've been meaning to post these pictures for some time now; I snapped them on our drive home from California last month:
I was left with one question:
And then I found the answer: click here
Monday, September 21, 2009
First, some background:
Elisabeth was diagnosed with Infantile Spasms in May of last year; she was 7 months old at the time. Up until that point she was doing quite well with her development (considering the significant brain damage from the hydrocephalus). Milestones were being reached; sitting up, rolling over, and starting on solids. Things were going well.
But then the dreaded spasms started. Infantile Spasms are a devastating form of childhood epilepsy. While they don't look like much from the outside, they cause great damage to the brain.
Elisabeth soon began to regress. All the milestones that she had hit became a distant memory. We desperately began searching for a cure; going through a long list of medications, treatments, and diets. Nothing worked.
And then last fall we started her on her current epilepsy med; Depakote. We immediately saw a reduction in seizure frequency and as the seizures slowed she seemed to come back to life. She went over 50 straight days with no spasms, and oh the progress we witnessed in that time period! Because her brain had a chance to rest and to heal, she once again began to smile, and laugh, and eat yogurt, and roll, and sit up. It was during those 50-beautiful days that she gained her first bit of vision and saw the world around her for the first time.
Unfortunately, the seizure-free streak didn't last forever. The spasms returned; not with the same frequency as before, but they are a part of everyday life for Elisabeth. Elisabeth has continued to progress developmentally, but at a very, very slow rate.
But we settled with the Depakote anyway, for we had hit a dead end. There was nothing left to try....until now.
Several weeks ago, on a Saturday morning, the phone rang. It was Donald's Aunt Cindy who lives in the Seattle area. She was calling to tell us that she had read an article in the paper stating that the FDA had just approved a new Infantile Spasms medication. My heart leapt at the news. There was a new hope.
As it turns out, I had read about this medication, Sabril, before. It has been available in other countries for years and years, but the FDA had never approved its use in the US.
This past Friday, Elisabeth and I drove to Spokane to meet with the neurologist about starting her on Sabril. He agreed that this is definitely something that we should try for Elisabeth.
So that's the good news.
Now for the bad news.
Sabril comes with one very severe side-effect; vision loss. This side effect is what kept the FDA from approving it for so many years in the US. And because of this severe side effect, we have to jump through major hoops to get Elisabeth approved for its use. Trust me, it's not as easy as driving down to the local Walgreens and waiting for 20 minutes. Basically, I had to sign my life away; 'yes I understand that there will most likely be vision loss; yes, I know that it is permanent vision loss; yes, I have tried everything else; no, I will not come back and sue the manufacturers of Sabril; yes, no, yes, yes......' (There was a lot of signing to a lot of statements)
Elisabeth's doctor also had to complete a stack of papers to become an approved prescriber and Elisabeth will be required to have an eye exam, as well as follow up eye exams every 3 months.
Donald and I aren't too concerned about the vision loss. We strongly believe that the benefits will outweigh the risks. Based on the progress we saw during those 50 spasms-free days last fall, I know that Elisabeth would improve leaps and bounds developmentally if we can rid her of this horrible form of epilepsy.
Elisabeth already has severe visual impairment, so that made it easier for Donald and I to make the decision. Not to make it sound like we don't care about her vision, because we do. But I have the comfort of knowing that I am not taking something from her that she already had. It's true that Elisabeth is no longer blind, but her vision is far from normal. I would say she doesn't see anything past a foot or two. And while she has gotten quite good at spotting most objects placed in front of her, I am not sure with what clarity she sees them.
It will be a few more weeks (or months) until she is given the go-ahead to start the Sabril. I am so grateful that the FDA approved this medication. I hope that this will finally be the answer and that Elisabeth will be able to live seizure free at last.
Saturday, September 19, 2009
I'm going to get some housework done now....
Peace out. (Alexandra and Lorelai's newest phrase)
Friday, September 18, 2009
Have a lovely day,
Thursday, September 17, 2009
Alexandra's soccer team, The Smoothies, played their first game of the season on Saturday. It was hot. I brought along a squirt bottle filled with cool water and sprayed it all over Alexandra's face when she had a minute or two.
She wasn't so fond of the yellow team (The Monkey's). Apparently they were a little braggy every time they scored a goal. Alexandra told me that she wanted to turn them into snickerdoodles. I think that was meant to be a threat, but it just had me thinking of cookies the rest of the day.
That's so Lorelai.