Please Pray for Zoe...

First I will say that Maddie is still doing great...Actually is doing amazing! We are thrilled that we have this new child and she is amazing us everyday with what she is now doing! We were told that we can continue her treatment for a few more weeks before having to switch to something else...She will need to switch as the pressure in her eyes are almost certainly already starting to rise.


Maddie is babbling like crazy! She is repeating words randomly again too! Yesterday she said, "bu bu" and waved for Bye, bye! She has such a wonderful new personality it is amazing! We will go to Boston on Monday of next week (Rob is going with me) to have her Cardio testing and then Kidney testing. That should also give us an even clearer answer for Tuberous Sclerosis. I am no longer anxious of these tests though. All along I always had this gut feeling that there was something else wrong...I was right about that and now I no longer have that feeling. I think it is good to get the testing over with to confirm that she does not have this, but I really am convinced that she does not.
On another note, I wanted to talk about a family that I have connected with along our journey of searching for answers for Maddie. Little Zoe is about the same age as Maddie...Like Maddie, Zoe has had a life full of mystery symptoms that has taken control of her life. Unfortunately, Zoe is not getting any better and seems to be suffering more each day. Her parents have spent the last year and a half searching for the answers that could save their little girl. I know they are feeling like they are running out of time, running out of possibilities, running out of answers. I know this because we have felt this same way at times. I am sharing this with you all as I know you all prayed for Maddie and continue to. I also know your prayer have certainly been apart of our finding answers for her. I am asking that you read a note written about Zoe, by her father, one year from the day she began having seizures, and pray for her too. Her family's encouragement helped us stay strong and keep searching. They need this more than ever now. ..
A note from Zoe's Daddy:
Never did I think, 1 year ago as we sat in the hospital with Zoe having uncontrollable episodes for the first time, that a full year later these episodes would be just as bad - if not worse. I would not have believed that at least 2 dozen doctors, specialists and therapists would be completely unable to help her in any way for a full year. In my wildest dreams, I couldn't have imagined that Zoe would not be saying "mama" or "dada"; that not only would she be unable to walk, but still unable to even crawl, or get up into a sitting position on her own, or laugh, or see something she wants and pick it up...
And yet that is where we find ourselves today as Zoe approaches 14 months of age. I'm not writing that out for everyone in a search for sympathy for Sara or I. I'm writing it out because I find this perspective staggering. I wanted to point this out to everyone who's following Zoe's story. Even though we are taught to think otherwise, there is not always a treatment. There is not always a medicine that can help. There isn't always a diagnosis that can explain. In the 21st century, Zoe is proof that humans still don't know anything when you get down to it. We are still in our infancy with regard to medicine. Hell, we're newborns.
So I write this note as a challenge to myself, and to all of you. Where you're able, when you're able, please apply yourselves. It doesn't always have to be like this. There are answers for every question. There are cures for every condition. They simply haven't been found yet. In your corner or your world, using whatever resources you have, please do what you can to help us, as a species, move forward, so that our future generations need not suffer the way Zoe suffers everyday.

-m
Zoe's progress can be followed on facebook as well...If you want to follow you should request Zoe Lain Nicholas as a friend and send a quick note that you would like to follow her progress.
Thanks you all for your prayers!!!