Search This Blog

December 9, 2008

Winter Update

And now.. an overdue update!

The 2nd Annual Angels Ridin' 4 Taegan motorcycle ride was another great success, despite hurricane Ike threatening to put a damper on the event. It was wonderful to see so many familiar faces at this years ride. Taegan had so much fun this year!!! She was able to lead the riders to the first stop and then joined in the festivities on the last stop of her ride. Many of you commented on how much healthier she seemed this year compared to last year. HBOT is one of the therapies we have to credit for Taegan's improved health. Boosting the immune system is one of the many benefits HBOT provides. We're hopeful that Taegan can receive another 40 hours of HBOT this spring.

Hopefully, I'll be able to start planning another benefit for Taegan soon. I'm hoping to resume plans for the spaghetti dinner benefit that we'd originally planned for last spring. My grandmother, who was very ill last spring, is doing much better these days. I'm so thankful, and count my blessings every day for her miraculous turnaround.

While we are overjoyed with the improved health of my grandmother, we are deeply saddened with the recent loss of Taegan's grandmother, Shawn's beloved mother. Sadly, on November 13th 2008, she lost her 2 1/2 year battle with ovarian cancer. While we are grateful for the many ways she has blessed and enriched our lives, it's still difficult going through each day with the realization that she is no longer with us to share in the joys and hardships we all face. The holidays are going to be difficult, probably for a good while to come. I try to take solace in knowing that she is no longer in pain, and that she still remains with us in our hearts.

On October 24th, Taegan was formally diagnosed with Autism by Riley Children's Hospital here in Indianapolis. I've known in my heart for quite a while that she was autistic, but seeing it written on paper makes it somehow, more ... real? The official report came in the mail last week. Just reading through it made my heart ache, not only for Taegan, but for all of us. It seems that God wanted to make Taegan especially special - LOL

This is a journey of learning - Taegan is teaching everyone she comes into contact with - but perhaps I'm the most difficult student she'll encounter. Or perhaps I have the most to learn? Whichever the case, I know the road is long, and it's a path less traveled for sure, but we're walking hand in hand... and I have faith that we'll end up in the destination that was intended for us in this life.

I've come to realize recently that I've never really grieved for the challenges Taegan faces, or the ones I have faced with her. I'm not sure that 'grieved' is the accurate term, because I celebrate her life and the joy she brings every day. I haven't taken the time to reflect back on all of the things we've gone through since her premature birth. It's really been quite a whirlwind. It never stops. There's never been a time of reprieve before the next onslaught of issues/diagnoses manifest. Sometimes I find myself wondering, when will it end? How much is going to be enough? Do I really want an answer to that question? I just keep pushing ahead, trudging forward, researching and problem solving for the issues she faces in my spare minutes. If I stop to think about her challenges - my hopes and dreams for her - and how they inevitably will be altered, I'm afraid the tears might never stop.

So instead, I choose to stop and reflect on the challenges she's overcome thus far, and the remarkable progress she's made in 2 years. We began this website and the fundraising efforts 9/11/06. In that time, we've been able to provide Taegan with a life altering therapy called HBOT! Because of the kindness of our friends, family and complete strangers, Taegan has been able to receive 120 hours of hyperbaric oxygen therapy! Her tight muscle tone continued to decrease again with her last round of HBOT - she still has to undergo serial casting occasionally, especially after growth spurts, as well as Botox injections to help manage some tightness in her left hamstring and calf. Her muscle tone on her right side is so much better now, she has started to train in a smaller brace called an SMO. This is excellent news!!! The AFO's that she's always had provided support for her knee as well as her ankle and foot. An SMO provides support only for the ankle and foot. Our goal is to progress Taegan to an SMO on her left leg as well. I know we'll get there!

She continues to LOVE hippotherapy (therapy on horseback) each week. She often asks "Horsies?" or "Horsey Monday?" She knows that Monday is hippotherapy day. It fills my heart with joy to watch her smile and clap her hands while she's riding the horses.

Her weekly cranialsacral sessions with Mary are going wonderfully. She's having some great releases and is more calm and able to relax afterwards. It seems to be carrying over for longer periods of time. Sometimes I think it works too well, as often times it's a struggle to keep her awake on the car ride back home! Sleep for Taegan continues to be one of her biggest nemeses. It's hit or miss with her as far as a consistent sleep schedule. Some weeks she is sleeping 3 hours a night, and others she'll sleep up to 6. She saw a developmental pediatrician at Riley during the Autism evaluation. He wished me "good luck" with the sleep issues, as he said it appeared I had tried everything he would recommend to achieve a more consistent pattern. The Dr. explained that with PVL as well as with Autism, the sleep centers of the brain are often affected. I should be so lucky! :-)

Taegan is doing very well with her occupational therapy sessions. They've really been working hard on her sensory and oral motor issues. The OT utilizes the horse for treatment with Taegan, which is awesome for sensory integration.

Speech is coming along well for the most part. It seems she has consistent set-backs. We take 2 steps forward and 1 step back pretty regularly. I'm amazed at what she knows, and is just not able to consistently express. For example, the speech therapist will show her two picture choices and will ask her to identify "Which picture shows an item that is crunchy?" (i.e. potato chips and pancakes for the two cards). Taegan answers abstract questions like that pretty consistently. There is so much locked inside her head, I just wish I could find the right key to unlock my daughter. One day, I will find it.

Physical therapy is going great! She still receives private PT two times a week. We're focusing on strengthening her knee control and hamstrings in order for her to be able to wear the SMO brace on her right foot consistently. She has another physiatry appointment this month - the Dr. will evaluate her progress and decide whether more Botox injections are needed at this time.

Taegan tries to see our chiropractor on a monthly basis. We've gotten a bit off our routine, as over the summer I had a surgery which has needed a lengthy healing time. She just loves Dr. Combs and his staff. He gives out suckers after all! :-)

School is going well for Taegan this year. It's hard to believe the year is half over at this point! Taegan loves to ride the bus, and often sings to the drivers I am told. She really enjoys her teachers and comes home saying the funniest things some days. Frequently I'll hear "Be quiet!" or "Sit down." and "Get your backpacks!" from the next room. It really does make me smile.

As this year comes to a close, I'd like to say thank you again, to all of Taegan's special angels here on earth. I know I've said it before, but it simply cannot be stated enough; without you, she couldn't have accomplished all that she has in the past two years. Thank you for supporting her at her ride each year and for all of your kind donations throughout the year that make HBOT possible for Taegan. Thank you for taking this journey with us... Until next time ~ Brightest Blessings to all of you, and may 2009 bring you happiness and good health.