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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.

July 25, 2008

2nd Annual Angels Ridin' 4 Taegan Motorcycle Ride

Taegan's 1st Annual "Angels Ridin' 4 Taegan" motorcycle ride raised enough money for Taegan to receive 60 HBOT treatments in 2007. Taegan's physical therapists were very pleased with how well the treatments helped decrease the muscle tone in her legs! We're counting on God's magnificent earth angels (YOU!) to help us continue to provide this life altering therapy for Taegan in 2008. *~Thank You!!!~*





Our 2nd Annual Angels Ridin' 4 Taegan Motorcycle Ride to benefit Taegan will be on September 13, 2008 from 11am-4pm.

~Poker Run~ *50/50* ~Door Prizes~

Registration begins @ 10am

Poker Run begins @ 11am

Registration is $25 per bike (T-shirt & wrist band included. Xtra T-shirts are $10 each)

The Ride Goes To: That Place, Bugsy's, Fat Daddy's,and Somewhere

Burgers & Dogs @ Somewhere in Bargersville after the run.

Registration on 9-13-08 is at:
Century 21 Realty Group Ruch-Hicks
1680 W Main Street
Greenwood, IN 46142

Please make checks payable to: Angels4Taegan

For questions contact Tammie Lee Hall @ 317-627-7900 or email thall21228@aol.com
Angels4Taegan can be reached via email at angels4taegan@yahoo.com

July 23, 2008

Summer Update

Hello everyone - It's been a few months since I've updated Taegan's blog.
Time seems to be scurrying by as of late. Taegan finished her first year of special needs preschool at the end of May. She really enjoys school and is excited about starting back up in a couple of weeks. She often says "playground friends" which I interpret as meaning she is asking when she will be returning to school to see her teachers and classmates.

It's hard to imagine, but Taegan turned four in June! She is growing up entirely too fast for my liking. She's really gotten tall in the last few months. Unfortunately, her growth spurts cause her more muscle tightness in her legs, and even her back as well. These things are to be expected because of the cerebral palsy. She's on the 'priority list' to receive more botox injections and again will be serial casted for several weeks. Not fun, but it's necessary for her to be mobile. Her braces are rubbing her heels (especially the left) due to the increased muscle tightness that came with this growth spurt. She'll need a new pair of those again as well when casting is completed. It's too bad we don't have a hyperbaric oxygen center close-by so we can get a few hours of HBOT during these growth spurs of hers. :-( I always wonder if she'd even need botox injections at all if we had regular HBOT treatments. (The whole botox issue is one I wrestle with constantly - it's quite scary to me if I'm being honest.)

We've been on the biomedical path for a few months now. In April, Taegan was seen by a DAN practitioner (DAN=Defeat Autism Now) who arranged for a battery of tests, including blood tests and urine analysis etc. The results showed she has metal toxicity, a common finding in children with autism. She's been on a regimen of vitamin and mineral supplements for about 2 years now, but we've recently made alterations to the regimen. We've added B12 shots, which she receives every 3 days. Also, we're doing chelation treatments with her to help pull the metals out of her body. She's on a prescription to help kill the high yeast overgrowth in her gut (another commonality in the ASD population as well.) It really is like a puzzle, finding what works and what needs supplemented etc. We've seen a lot of improvements in Taegan just from the B12 injections, which she's been taking since April.

We've had to put HBOT on hold for a few months while pursuing the biomedical approach. Biomedical treatments are quite expensive, and with ASD will likely be lifelong in order to manage the symptoms of ASD. As I've learned more and more about this disorder and the biomedical approach, it really comes down to an individuals genetic make-up and what the body is lacking or cannot produce enough of to function 'normally.'So you constantly need to be supplementing the body with what it needs, which can be quite a bit in fact!

Once chelation has done its job and pulled out metals that shouldn't be in the body, I'll continue with HBOT treatments. I'm hoping this can all happen in 2008-09. We're planning several fundraisers in order to help us provide this for Taegan.

Our 2nd Annual Angels Ridin' 4 Taegan motorcycle ride to benefit Taegan will be on September 13, 2008 from 11am-4pm. I will include further details in a future blog.

Taegan is continuing with her therapies weekly as well. She now has speech therapy 2x's a week (she also receives 60 min/week of speech at school during the school year.) She's receiving physical therapy 3x's a week (plus 30 min/week @ school.) She sees an occupational therapist 1x/week who has been focusing on Taegan's sensory needs as well as her visual deficits. She's been doing very well with her OT this summer. (She also receives 20 min of OT/week @ school). She's doing hippotherapy (therapy on horses) 2 hours a week. It's hard to believe she's been riding horses since she was 2 years old! Hippotherapy is her favorite! She says "horse, horses, and horsies" several times a week, which is her way of asking me when is 'horsie day.' It's really cute to hear her say it! She had 2 miniature horses at her 4th birthday party this year! She thought that was pretty cool. :-)

She's continuing to receive weekly craniosacral therapy treatments as well from our dear friend Mary VanNoy. Taegan enjoys Mary and always stops to play her piano after her session. :-) Taegan's monthly chiropractic appointments are also going well and have been especially important for her during this growth spurt phase. We are truly blessed to have such a wonderful group of therapists/doctors/teachers/friends in Taegan's life.


Thank you to all of Taegan's special earth angels for helping us to have the financial resources to provide the HBOT and biomedical treatments that have helped her thrive in 2007-08.

February 12, 2008

USA Today Advertisement 2-12-08


This advertisement appeared in the February 12th 2008 edition of the USA Today newspaper. I think it's worth circulating and sharing.

February 6, 2008

Postponed

We've had to postpone Taegan's March 8th spaghetti dinner benefit until further notice. My beloved 79 year old grandmother is very ill and on hospice care out in Pennsylvania at this time. I'm unable to devote the time and energy to organize a successful fundraiser during this difficult time. Trying to put it all together and solicit community support while you are out of state is nearly impossible, as you might imagine.

We've also had to postpone Taegan's April session of HBOT for several reasons; The main reason being, without having this fundraiser in March, we do not have enough money for the therapy.

Hopefully this spring we will be able to have the spaghetti dinner benefit for her. Right now, it's just impossible to speculate a future date.

Taegan's 2nd Annual "Angels Ridin' 4 Taegan" motorcycle ride will be taking place in July. We're excited about that! :-) I'll post more details when they become available.

In the meantime, if anyone is interested in sponsoring Taegan's ride and having your name/company name placed on the Angels Ridin' 4 Taegan T-shirt, please contact us at: angels4taegan@yahoo.com

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. :-)