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January 10, 2008

Winter Update

Hello everyone! Hope everyone has been staying healthy this winter.

Taegan finished up her 120th session of HBOT on December 20th. She's been doing very well. She again improved with her range of motion in all of her leg muscles by about 10 degrees. That is really WONDERFUL news! Her speech also improved during the treatment sessions. I heard many new words and several 2 and 3 word sentences sporadically. Since we've been home though, the speech hasn't been as fluent unfortunately. We still hear words intermittently and occasionally an "I eat" or "me sleepy" comes out, and that's always nice.

She's finally getting back into the routine of things again...we all are! Things have been so hectic since Thanksgiving, some down time will be nice. Sadly, Taegan's great grandfather McFarland passed away on December 23rd. We traveled to Greensburg, IN for the services over Christmas break. That same week, Taegan's great grandmother Cupp was admitted to the hospital in Pittsburgh, where she still resides at the time of this writing. Taegan, my mom and I traveled to Pennsylvania shortly after Christmas to spend some time with family there.

Taegan resumed her therapy and school schedule this week as well. She really enjoys school from what I can tell. She has been in such a good mood all week. :-) In recent months, Taegan has been displaying more and more signs of autistic behavior. It has been quite difficult for me to deal with actually, even though I am very familiar with the disorder, having taught special needs preschoolers for 5 years. When it's your own child, it's a different reality that no one can prepare you for. She hasn't been 'officially' diagnosed with the disorder, but it has been mentioned several times by various medical professionals over the past 18 or so months.

I have so many emotions... Part of me questions why cerebral palsy/PVL/apraxia/genetic disorder wasn't ENOUGH for Taegan to deal with in this lifetime. But I know these things are not up to me. Still, it's a struggle to put things into perspective sometimes, especially on those challenging days, when all you want to do is fix things for your child, but you simply cannot.

Someone recently said to me, 'This is just how your child is.' as if I didn't approve of who she was, or who she might become. I don't think people who have never been put in the position of having a special needs child can truly understand what it's like and everything it encompasses. It's not that I don't love my daughter just the way she is, it is that I want the best possible life for her. And for Taegan, that means living the least restricted life possible. If there's a chance in hell that her physical limitations can be lessened, you'd better believe I will do everything in my power to provide that for her. There is HOPE out there... I have strength and determination. Most importantly... I believe.

And so it seems another journey is beginning...

For many months now I have been researching how to eliminate toxins from the body. Specifically, heavy metals. There are all kinds of theories out there on the cause of autism, and I don't discount any of them. Who knows what the root cause is, or if it is just one causative factor. I strongly feel her body needs to be cleansed of the metals (which come from a variety of sources, but predominately come from vaccinations/routine shots.) Taegan received the RSV (also referred to as Synagis) shot monthly during her first year of life. That was a total of 9 shots right there. I have searched for the ingredients in those shots, and not to my surprise, the ingredients cannot be found, on-line at least. Back in April, it was found that Taegan had a copper toxicity. The level was alarming, to say the least. I tried my best to remedy that problem as the Cole Center suggested. The diet alteration didn't bode well. Taegan took the supplements without a problem. I've got her back on the supplements for copper elimination. We'll see how that goes.

I'm hoping to have a comprehensive biomedical work-up done on her in the near future. I'm researching several doctors/facilities, with the most promising ones (closest to us) being in the Chicago area.

In the meantime, I'm organizing the spaghetti dinner benefit for Taegan. It will be on March 8th in Madonna Hall of Our Lady of Greenwood Church. More details to follow.

Til' next time. :-)