Tuesday, October 14, 2008

We're still having fun ...

even though some days are tougher than others. Gorgeous Indian-summer weather (and a respite from her nearly endless nausea) allowed Jenny to enjoy a Sunday excursion to the Richmond Marina, with soft ocean breezes, picture-perfect views of the San Francisco skyline and an ever-changing panorama of sailboats entering and exiting the harbor. She adored basking in the sunshine while sharing a deli sandwich with her dad. But, Jenny was equally pleased when she returned home to discover her mom decorating her room with Halloween tinsel, replete with orange metallic jack-o’-lanterns that sparkle whenever the sun catches them. She’s already planning her Christmas decorating scheme – and looking forward to Christmas visits from family and friends.
All of this is possible because Jenny’s condition has stabilized. She is still able to eat (but needs extra nutrition via her g-tube to avoid losing any more weight) and to breathe on her own (although she uses a “sip-and-puff” respirator during the day and a different one at night). And, she is working hard with her physical therapists to preserve and improve the use of her left thumb and forefinger, exert some control over other muscles and retain her range of motion in all four limbs.
Through all of this hard work – on top of the schoolwork she resumed with an at-home tutor in September – Jenny remains amazingly cheerful and optimistic. To be sure, there are hours and even days when the constant challenges seem too much to be borne. But, with a little help from her friends, Jenny always bounces back. And, perhaps, with a little help from a new experimental treatment that she began about a month ago, Jenny will bounce back physically as well. At least, that’s what we’re all hoping and praying will be the case.


Mahendra said...

You're awesome Jenny! You are an inspiration to us all to fight the good fight.

K Fuller said...

We have Jenny's picture on our vision board. I think a prayer and thoughts for good health to return whenever I see it.
Bless you all

Bill B said...

Sorry if this has been asked before. Have you ever had her tested for Lyme disease? The tests for Lyme are only about 50% accurate at best. It would be best to talk to a Lyme literate doctor. You may be able to find some through the http://www.lymediseaseassociation.org. I have seen stories like yours on the Lyme blogs. Lyme is considered the great imitator and can cause all of the symptoms I have seen mentioned.

Bill B

jacqueline said...

hello Jenny and her family! i was so happy to see a new post here. "stabilized" is good, right? a nice word to see regarding your condition. i hope the new experimental treatment reveals some progress towards recovery. i just wanted stop by and let you know that i was thinking about you and wish you the happiest of halloweens!!!

ps. did you know the Twilight soundtrack will be in stores November 4th? i was just on the website (thanks to reading your profile again). you can see the details here http://www.stepheniemeyer.com/ (i'm a late bloomer- YOU may already be aware of this stuff:) ...the posters are pretty cool too.

pam p said...

I am not a healthcare professional, however, I was searching the internet and came across the website bacteriality.com
This websit has enlightening information on many degenerative diseases and their curability through Marshals Protocol. It may be of some assistance to you and your family. My prayers are with you.

nicemiramar said...

Hi Jenny,
I found your blog when researching the Gardasil vaccine. I see that you and your family might be interested in alternative medecines.

I suggest you look at www.naet.com
It may sound wierd but I assure you I have heard and witnessed amazing results with this technique. I have no interest in this organisation whatsover, but reading about your case I instantly thought of NAET.

You could contact Dr Nambudripad in LA and ask her to recommend an EXPERIENCED ADVANCED practicioner in your area.

My thoughts are with you.