Search This Blog

December 11, 2009

Another Year Comes To An End.. and What Have We Learned?

So, I haven't done the best at blogging in 2009. Perhaps not much happened that was blog-worthy... or perhaps life just left little time to blog. Ahhh, whichever the case may be, I'll make a resolution for 2010 to be a more timely blogger. :-)

Not much happened in the way of fundraising in 2009. We weren't able to have the 3rd Annual Angels Ridin'4 Taegan motorcycle ride benefit this summer. I wasn't able to get everything organized and put together by myself in the limited time I had to prepare. I scrambled to find volunteers to help, but resources were limited, and no volunteers were to be found. It was disheartening, to say the least. This year, hopefully if I begin organizing in early spring, I can get something put together by end of summer. The biggest hurdle I've encountered is finding a place for all the motorcycles to meet/register. I was turned away by countless churches due to insurance reasons. If anyone knows of a place where 100 or so motorcycles can gather for Taegan's ride, please contact me. ( )

The motorcycle ride is the event we count on most each year to bring the bulk of the funds in for Taegan's medical fund. Needless to say, we weren't able to provide her with anymore hyperbaric oxygen therapy treatments in 2009. Without the HBOT, physically she has had a rough year and a half. She's had 2 rounds of botox injections followed by serial casting in the past year. Serial casting lasts between 6-8 weeks, depending on the spasticity of her leg muscles. Next Friday I will take her to the surgery center again, where she will undergo another series of botox injections. Hopefully she will not have to be sedated for this series. When she was receiving regular HBOT, she did not need botox injections to manage her muscle tone. She has had to have botox injections every 3-6 months to manage spasticity. It's frustrating to see a treatment as natural as hyperbaric oxygen not being utilized to treat cerebral palsy, when it's so blatantly obvious that it WORKS! So many things in our government are corrupt... don't even get me started.

Progress has been quite slow in the last year. Often with Taegan it is two steps forward, one step back. And sometimes, it's two or three steps back, in her case. She continues to regress in gross motor skills during periods of illness. She is currently being tested for possible mitochondrial disease, which is one possible explanation for this phenomenon. Taegan had some preliminary blood work done, and all the tests came back negative, thankfully. As I understand it, the next step is for a muscle biopsy to be done. I'm not sure if I want to put her through such invasive testing or not. It's quite a large chunk of muscle they would remove from her thigh. The treatment for mitochondrial disease is management with supplementation with things such as COQ10 and carnitine. I've already got her on so many supplements, why not add in some others that are known to help with mitochondrial disease as well?

Taegan started kindergarten this year in a special needs self-contained classroom. I think she enjoys school pretty well. It's hard to know really, as she cannot communicate about her day etc. It has been quite an adjustment for her though, as they do not offer PM kindergarten to the special needs students. So, she has had a rude awakening this school year, having to wake up at 7:30am 5 days a week. She's still adjusting, but doing better with the new schedule, overall. I do know she absolutely LOVES to ride the bus.

Taegan continues to have PT, OT and Speech at school, as well as privately throughout the week. She also has hippotherapy, music therapy and cranial sacral therapy weekly as well.

In September, Taegan began music therapy with a wonderful music therapist named Christine Barton. To anyone looking for a good music therapist in the Indy area, Chris is worth her weight in gold!!! Taegan absolutely loves her and asks at least 50 times a week, if not more, "Chris? Music? Chris!! Guitar? Piano? Chris???" We have a 'countdown to Chris' just as we do for "horsey Monday." Ha ha ha! It really does fill my heart with joy to see her so excited about music and horses. It's the little things... right?

Christine Barton's website link below:

I'm still treating Taegan holistically to manage the symptoms of autism. She's been on the Yasko protocol for nearly 2 years now. It's the best decision I've made in regards to managing it and helping her to live a more functional life. The Yasko protocol focuses on the methylation pathway in the body, as it relates to your body being able to utilize nutrition properly. It's based on genetics and specific mutations in the pathway of each individual. To learn more about the Yasko program, click the link below:

This summer I took Taegan to Nashville, TN to see a highly recommended and respected homeopath named Carole Krones. She did an amazing assessment of Taegan and put her on a remedy that has helped calm and focus Taegan quite a bit. I think working with a homeopath complements the Yasko protocol immensely.

Whilst in Nashville, Taegan was able to meet up with one of her very special earth angels...Jan Pulsford. We had a nice lunch with Jan and her son. Jan is a dear friend, as well as a veteran musician. Since 2006, she has performed several live shows on Taegan's behalf, with all proceeds benefiting the Angels 4 Taegan fund.

And for those of you who'd like some cool tunes to help get you through your day, Jan has her music streaming 24/7 at the url listed below:

As Taegan celebrated her 5th birthday this year, it was difficult not to recognize the obvious gap in social development between her and her peers. I'd be lying if I said it gets easier to deal with each day, week, month, or even year. I opted out of having a traditional birthday party for her this year. Hopefully next June she'll be able to experience the joy and excitement of having friends and family gathered together for a party in her honor.

My wish for her in 2010 is that she will be able to experience the magic and joy of childhood.... that she will be able to use her imagination and dream magnificent dreams... and on a selfish note, I'd love for her to be able to share her dreams with me.

So Santa, if you're reading this - I'm pretty sure my name isn't on the naughty list. When you slide down our chimney on Christmas Eve, please leave some imagination seeds and dream dust. :-)

No comments: