As She Starts her Journey Home

********UPDATE********

Apparently, Miss Elise is quite the fighter and has bounced back a bit!

I just checked her CB site @ 5:45pm, EST:

SATURDAY, AUGUST 16, 2008 03:54 PM, CDT
And so, Elise's journey right here with US continues. She hasn't required oxygen since yesterday, she's having a few scattered seizures, her bowel sounds are back in full force, her respirations are normal, things are looking stable.
This was the biggest scare we've had with Elise in a few years. It's normal for her to get sick, go on an antibiotic, get extra respiratory treatments, then get better. Everything is usually status quo. This time was different - she was presenting lots of new symptoms that we haven't seen before. This past week has NOT been fun at all - now I know what an emotional rollercoaster is. I don't want to go on that ride again.
The EEG showed that Elise has very little brain activity. Evidently, you don't need lots of brain function to feel how loved you are. Elise can feel the love that surrounds her and she's not ready to leave this lovefest just yet.

I am extremely sad to announce this news:

It seems another precious Tay Sachs Angel

is tiring and losing

her fight against this awful disease!

Please PRAY for Big Elise as she starts her journey!!

Here are some posts on her CB site from the last few days:


TUESDAY, AUGUST 12, 2008 03:40 PM, CDT
This is the update I've been dreading. I think Elise is getting tired.
We will see the neurologist tomorrow. When I spoke to him yesterday he said that he was worried. I am worried too. I will try to update after our appointment with more details.




WEDNESDAY, AUGUST 13, 2008 07:03 PM, EDT
I wish that I had better news to update. The neurologist wanted Elise to have an EEG (a test that measures brain activity) today during her appointment and we agreed. The results were not good. At this point, she has very little brain activity.
A quick reminder about what Tay-Sachs is...Elise is lacking an enzyme called Hex-A. This enzyme breaks down naturally occurring fatty desposits in the brain. Without this enzyme, the fatty deposits accumulate in the brain cells and gradually turn off each body function.
Over the last few days, there have been a few significant changes with Elise. For a few days in a row, her respirations (breaths per minute) were shallow and were 13-14 (normal for her is about 25). This is not due to MRSA, it's probably due to what's going on in her brain (ironically, the MRSA is the lesser of the evils right now). The most noticeable and worrisome change is the lack of seizures. That might sound like a good thing but it's actually not. Her brain cells are so filled up with fatty deposits that her brain can't even have seizures anymore.
We are so thankful for the family, friends and food that have been pouring in. It's been a good distraction for Caroline, she loves all of the attention. Thank you for the kind words and positive messages that everyone has been leaving in the guestbook too.
I asked the neurologist for a prognosis but he couldn't say. For now, we will do our best to continue to treat Elise like she's living. We'll love her and enjoy her presence every minute that we get. That's what we will do until she takes her last breath.




FRIDAY, AUGUST 15, 2008 09:18 AM, EDT
Elise had a good day yesterday. We were able to get her off oxygen for about 10 hours. She had a couple of seizures yesterday and she just had another one this morning (that's a good thing). She looks beautiful, comfortable and peaceful. We have morphine on hand if needed.
For now, we keep plugging along and taking things day to day.
Thank you for all of the support - whether it was a message in the guestbook, a phone call, a visit, an e-mail or a kind thought. I can't believe how many people have been following Elise's story. Thank you.

Please send Big Elise your prayers & best wishes!