Monday, October 26, 2009

Charge it for CHARGE!!!

Help us help kids like Alexis smile each and every day!!!

Alexis and our family have been blessed by the extended family of the CHARGE Syndrome Foundation and their online support group.

With your support, the Foundation can continue its publications, funding of research and biennial international conferences. As we know with Alexis, individuals with CHARGE syndrome face many challenges. Here is a picture of Alexis at 4lbs in February 2006. And then a picture of her from last December, doing fabulously!

We are hoping to raise $250 to celebrate Alexis and her CHARGE syndrome friends!

We thank you for your contributions!

Monday, October 19, 2009

Steve Cahill is this AWESOME dude at Philips who is a TV Director. You all may remember that he filmed Alexis' surgery in April and we shared the video with the "world" in June.
In July, one of my colleagues collapsed returning from the Philips gym. The "Red" phone (which is actually one of those old style heavy big ringer phones) kept ringing. Each person on the Emergency Response team has a Red phone and a pager. On this day, it was ringing and ringing, which is quite concerning.
The story has a great ending, so you won't be disappointed to watch the video. It shows Joe's experience, what he remembers, what happened afterwards, how the Philips Emergency Response Team members jumped into action and how his heart got repaired with 2 catherization procedures.
Joe's story is a warm story about how important the heart is to the body. Joe is truly here today because the best medicine was applied at the best time. Alexis is our little miracle, but Joe is also a miracle!
Here is the video link to Joe's "Shocked Back to Life" video:

And if you missed it before, here is the video link for our dear Alexis:

P.S. For the curious, there is also an excellent video on the Heart Catherization procedure and how the doctor placed stents in the heart arteries after Joe's heart attack. (GREAT TRAINING MATERIAL FOR US TO BE PREPARED FOR ALEXIS' CATH PROCEDURE)

Thursday, October 15, 2009

EEG Day...

Smiling at the camera, what a Ham!

Curious if Mom got the flash setting right this time....
Busy working at school with her glorious hairdo!

Exploring the orange paint!
Checking out the feathers and look feathers stick to wet paint!

Getting her full costume ready!

Chilling at the hospital to get the hairdo and decorations off (it says Alexis in the letters)!

The end.
As Paul Harvey would have said, "The rest of the story, we will find out in 3 weeks when the Doctors review her EEG". That is most definitely HOSPITAL TIME. ZZZZZZZZZZ.
Hope you enjoy Alexis EEG day as much as she did!

Wednesday, October 14, 2009

Bumps in the Road... Upsetting the Apple Cart?

So, over the past couple of weeks we've had some roller coaster rides. They are minor in the scheme of the big picture -- but we all know that minor bumps along the road can upset the apple cart just as well.
Alexis has numerous doctors, nurses and "followers" of her medical care. We have seen Neurologists throughout her very short life but they have always been "come-and-go" doctors. What I mean here is that they descend on her in the hospital, do some test and then give her a "clean" bill of health. She's had a Neurologist when she was in the NICU in 2006 and in the ICU in 2007.
Over the past year, Alexis' sleep studies have shown SPIKES. Our Sleep Doctor from Children's was quite alerted after he saw two sleep studies showing these SPIKES.
What are spikes? Misfirings of the brain.
Are these concerning? Well, not necessarily. But our sleep doctor is also a Neurologist. To understand what is going on more thoroughly, he 'ordered' an EEG for Alexis (this was a daytime EEG and the leads were on her head for 20mins). The results he saw were spikes all over the brain, a lot of activity and a lot of curiousities to what could be going on. His recommendation was that Alexis should get a 24 hr EEG to watch more closely the brain spikes.
Why the concerns about the spikes? From Alexis' Neurologist/Sleep doctor's experience, he has never seen a kid with these spikes that doesn't have seizures. His direct quote to us, "It's almost a guarantee that Alexis will have seizures based on her abnormal spikes in her brain".
Hence, the bumps in the road. Today Alexis is geared up with her 24-hr EEG to determine if she's already having seizure activity.
In the mix of everything else Alexis has going on, it doesn't really surprise us.... but we had been "safe" (if that's a fair word) from Neurology up until this point in her life. Naturally though it does frighten us as we are anxious that eventually Alexis will catch a break.
So, in short, we've added another specialty to regularly see Alexis every 3 months and challenge us to figure out what is really going on and how it affects her daily life.
We'll keep you all posted on the status of Alexis' EEG results,
Catherine & Matt