Spaghetti Dinner/Silent Auction Fundraiser 4-28-12

Please join us on 4-28-12 for a delicious, homemade spaghetti dinner! We would love to catch up with old friends and look forward to making many new friends too! Feel free to contact angels4taegan@yahoo.com with any questions or comments and to RSVP! Thank you!

Pampered Chef ~Angels 4 Taegan Fundraiser~

Become an Angel for Taegan. Pampered Chef and Angels4Taegan combine forces to help raise money for 5 year old Taegan McFarland's medical fund.

This is a Pampered Chef "Catalogue Show" Fundraiser. A percentage of the total fundraiser sales will be donated by Pampered Chef directly to Angels 4 Taegan.

May is Pampered Chef's "Help Whip Caner" month and features some special products that are not available any other time of the year! Any guest whose purchase is $60 or more (before tax and shipping) will receive two reusable "Help Whip Cancer" shopping bags for free! All guests who spend $100 or more will be entered in a drawing for a Family-Size Quick Stir Pitcher. Orders will be placed on May 7th and can be shipped to Michelle McFarland (if you are local to her), or shipped directly to you.

If you would like to support Angels 4 Taegan, you can visit http://www.pamperedchef.biz/rachaelo and click "Our Products." Then Click “How to Purchase.” Enter “Angels 4 Taegan” as the host and you will be directed to a page where you can view the entire catalog and place your order online. You will be able to order on the website until May 7th at 9:00 a.m. You may also place a “paper” order with Taegan's family! Please note, if you use a credit card to purchase your items, your credit card will not be charged until the show closes on May 7th.

You may purchase today through 9am May 7,2010. If you have any questions, please feel free to contact Michelle at angels4taegan@yahoo.com

Thank you for supporting Taegan!
www.angels4taegan.com

On-line Music Benefit for Taegan

Today is Angels 4 Taegan day as part of the Music for Winter Festivals concert series in Second Life. Please come and share some live music with JaNa KYoMooN (Jan Pulsford) at Mystical One's Mystical Healing Park at 7PM Eastern Standard Time. Taegan is a beautiful 5yr old girl who is dealing with a variety of disabilities. We hope you will become an Angel for her by raising money to help Taegan receive life altering medical treatments.

So grab an avatar and head into the exciting virtual world of Second Life. Join us by copying this url into your web browser:
http://slurl.com/secondlife/Spring%City/170/66/25/25

4PM PST/ 6PM CT /7PM EST /12AM UK /1AM EURO

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. ( angels4taegan@yahoo.com )

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:
http://www.christinebarton.net


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:
http://www.holistichealth.com/#/dr-amy


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.
http://www.homeopathytennessee.com/

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.
http://janpulsford.blogspot.com

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:
http://musicallmusic.com/radiojana/


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. :-)

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.

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

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.

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.

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

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. :-)

Another Round of HBOT Underway

Taegan finished her series of serial casting in mid November. She had 4 total sets of casts by the time the process was complete. It went very well. Both of her ankles are within normal ranges of movement. The physiatrist has suggested a possible regimen of Botox injections every three months. I’m hoping the hyperbaric oxygen treatments will help to maintain her range of motion in her leg muscles and perhaps we wont have to have any more injections of Botox. She might have to continue with serial casting after large growth spurts throughout her adolescence.

Taegan and I made another 10 hour trek by car out to the Blue Ridge Mountains of North Carolina where she is receiving another round of hyperbaric oxygen treatments. She’s completed six dives so far (as I type this) and already, her speech is flourishing. It always amazes me how quickly the oxygen begins to work wonders in her body. I hope these improvements can be maintained after we complete this round of 40 treatments. I’m also anticipating more improvements in her muscle tone/range of motion, especially in her legs. After our July session of HBO treatments, she made significant improvements in her range of motion in her legs. (Read previous posts from July/August for specific measurements of improvement in her range of motion.)

We’ll be finishing up this round of HBO treatments a few days before Christmas and then we will return in April for her last session of the 120 HBOT program. I’m organizing a spaghetti dinner/bake sale/auction for March 8th in an effort to raise enough money for the lodging and transportation etc. that we will need for that session.


Award winning composer/keyboardist/soundescape artist Jan Pulsford has once again generously offered several of her Christmas compositions up for download in the “download and donate” section of Taegan’s website. http://www.musicallmusic.com/angels4taegan_music/index.html

Jan’s main website can be found at www.musicallmusic.com

We hope everyone enjoys a happy holiday season. May you all have a blessed 2008, filled with an abundance of love, laughter and peace.

Casting Update

Casting is going well. Taegan is in her 3rd set of casts this week. The doctor is pleased with her progress so far. Hopefully she will only need two more sets of casts in order for her range of motion to be where they would like it.

She was fitted for a new pair of AFO orthotics (leg braces) last Friday. Once casting is completed, she will hopefully be able to start wearing her AFO's on a regular basis.

This week she has had to wear a knee brace on her left leg at night while sleeping. Her leg muscles were beginning to shorten due to her keeping her legs pulled up close to her for a prolonged period of time.

She's still able to participate in all of her therapies during casting which has been a blessing.

Cramping only proved to be a problem during the first week and a half of the casting process, so I'm also thankful that it has tapered off and she is able to have restful sleep.

More updates soon....

Casting This Week

I wanted to update everyone on Taegan's progress.

Taegan caught a pretty bad viral infection (are there any good ones? LOL) 3 weeks ago and is still on the mend, recuperating from that. She missed a week and a half of school and therapies, which threw off her whole routine. She was able to receive the Botox injections 2 weeks ago, and we are just now beginning to see the effects.

She is no longer able to stand or walk, as it is extremely painful for her to place any weight on her left leg. We believe this is happening because the Botox is relaxing that left calf muscle enough now that Taegan is no longer able to depend on the high tone, or tightness of that muscle to bear weight on (usually up on her tip toes.) It's a muscle that she has never been able to use before which now that it is loosening up, is obviously weak from never having been used.

It is probably quite sore as well. Taegan has been saying "foot ow" quite frequently in the past week. Last night I heard her saying "ohhh please... please foot... no foot...please." My heart aches for her, that she is having to experience such things. But really, it is good that this is happening, because it means changes are occurring in her muscles which will hopefully allow her to have more functional use of her legs.

The Botox can last anywhere between 3 to 6 months. It is different for everyone. So, she could receive another dose in 3 months if needed. Most likely, she will need to have this treatment on a regular basis, especially during growth spurts, as the muscles will lengthen and tighten during periods of growth.

Serial casting was supposed to occur last Friday, the 5th. Taegan was still too sick at that time, so casting will take place this Friday, the 12th. I am apprehensive about casting, but realize it is necessary to hopefully achieve the outcome we desire. I'm just worried that since she is already having complaints of her foot hurting, when it is casted it is going to cause even more discomfort and cramping.

Over the weekend, Taegan's foot was hurting her so badly that she screamed when Gramma tried to take off her shoe. She was so sensitive, she pushed away my hand and said 'No!' when I attempted to feel for swelling etc.

On the brighter side, she was in wonderful spirits Monday after school. She really enjoys school and is a much more pleasant child when it's part of her weekly routine. :-)

In other news, I am busy planning the spaghetti dinner benefit for Taegan. It should be either the first or second Saturday in March. This benefit will help pay for our accommodations while we stay in North Carolina for our final round of 120 HBO sessions in April. Watch Taegan's blog space for further details.

Thanks to everyone for keeping Taegan in your thoughts and prayers as she goes through this difficult month ahead of serial casting.

Botox Injections & Casting

Hello All ~

It's hard to believe fall is upon us already! Taegan has really enjoyed being outdoors this summer. She is very curious about grass, trees, flowers, and especially rocks!

Taegan began a special needs preschool program in August which she attends 4 days a week. It is provided through our local school system. It took a few weeks for her to adjust, but she is doing well now. She LOVES riding the school bus especially. Her new words are: friends, school and bus. She's singing a lot more songs now, and is able to pronounce the words quite well. She loves to sing "Head, Shoulders, Knees & Toes."

She receives PT, OT and Speech therapies through school now, but she still receives them privately as well. She actually has PT 4x's a week, OT 2x's a week, Speech 2x's a week, Hippotherapy 1x/wk, craniosacral therapy 1x/wk and chiropractic care 1x/month. So, we're still busy, busy, busy!!!

We met with the physiatrist (doctor of physical medicine) last week and decided to go ahead and try the Botox injections and serial casting. Taegan has had such a growth spurt, that her muscle tightness in her ankles is extremely tight now. It is causing her to be unstable with her balance and she has much difficulty walking. Her braces have not fit her for several months now, which is also contributing to her spasticity. The braces keep her muscles stretched out when she wears them. Since she's been unable to wear them, the problem is exacerbating We don't want to fabricate a new pair until after the Botox and serial casting, or they will not fit properly.

She will have her Botox injections on September 26th. We are only doing her calf muscles this time to see how well it works for the rest of her foot. She will be able to have more injections in 3 months, so at that time, the Dr. might decide to inject different muscles, depending on the outcome of the casting and first injections. She will have her casts put on the following Friday (Oct. 5th). Both of her legs will be casted at that time. The Dr. will stretch her foot as far as the muscle will allow, and then cast it in that position. She will have the casts for one week. Each Friday she will have the casts taken off and her foot muscles stretched again, even further, and then recasted in that stretched position for another week. This process will go on for about 4 weeks, depending on how fast the muscle stretches.

Please have good thoughts that the muscle cramps/charlie horses for Taegan will be few and far between! I can only imagine how this might go... when she wore her night splint on ONE foot, she would have terrible muscle cramping where she'd wake up screaming and grabbing at her leg. I could see it spasming. I don't know how I'll be able to help her when this happens with casts on that you cannot take off to rub the muscles when they're spasming.

The Dr. also gave us new dosing instructions for the Melatonin (natural sleep aid) to try for two weeks. Hopefully this will help regulate her insane sleep patterns!!! Lately she goes to bed about 10:30pm, and is up by 3am. She then stays up (in her bed) until roughly 7-8am and sleeps until I wake her for school! She's been grumpy and moody a lot, I presume from this erratic sleep schedule.

The chromosome testing showed that Taegan has what they call a duplication of 8p23.3
It is a duplication of part of the 8th chromosome. Instead of having 2 copies of that part of her 8th chromosome, she has 3. It is a very rare disorder, so rare in fact, that the genetics doctor had to get all the information on it from Wales. They sent me a pamphlet on the disorder about the studies these doctors in Wales have conducted on people with this disorder. The pamphlet only references 40 people who have this genetic disorder. I've taken the information with a grain of salt, because quite frankly, Taegan really doesn't fit into many of the categories they address in the pamphlet.

Some of the physical symptoms of the disorder which Taegan exhibits are: flat nose bridge, extra skin folds around the eyes, lower set ears, and a shared toe joint. The pamphlet discusses mental retardation and heart defects, which appear to be common for this disorder. It's not treatable or curable. Since Taegan has Cerebral Palsy, we're not sure if it is her chromosome disorder that is causing her delay or the CP. That is something we might be able to distinguish as she gets older.

We might have to investigate the possibility of a heart defect, although I would think the NICU would have found evidence of that after her birth. Taegan had a hole in her heart at birth, which they monitored during her first week in the NICU. They did several echocardiograms during that time, and the hole in fact closed on its own by the end of the first week.

We're looking forward to fall... pumpkin decorating, apple cider and Halloween! Perhaps Taegan will go as a mummy...her casts would go quite well with that gettup!
Before we know it, Taegan and I will be headed back out to the Blue Ridge mountains of North Carolina for her third set of 40 HBO treatments! (November 25-December 18)

Improvements Abound!!!

Taegan's physical therapist measured her range of motion (ROM) in her legs on Thursday and the improvements were quite significant!

She measured her ROM on her last visit, just before we left for the HBO treatments. So these changes have occurred since her last visit, obviously as a result of the hyperbaric oxygen treatments....

Taegan's hip abduction increased by 20 degrees on her right leg. On her left side, she improved 10 degrees. Hip abduction is the movement you make when you lift your leg straight out (away and to the side) from your body, while keeping your knee straight.

She also improved 15 degrees on her right side with her hip flexion. On her left side, little change, if any was noted with this movement. Hip flexion is if you would lie on your back and raise your leg straight up into the air, keeping your knee straight, and trying to get it as close to your shoulder as you can.

Both of her ankles remained the same in measurement, which was a bit of a disappointment, but I'm extremely happy with the muscle changes this most recent HBO session has helped her achieve. We could potentially see more improvements up to two months down the road from this last set of 40 HBO treatments. The oxygen will continue to 'dissolve' inside her blood stream for up to two months.

It's extremely important right now that we hit all her therapies really hard. The oxygen has awakened dormant neurons in her brain, and also has encouraged new capillary growth. We now have to 'train the awakened neurons' by making sure she gets all the therapy sessions she can receive. I'll be increasing the time spent working with her here at home on all her stretching exercises and speech techniques etc.

Taegan's had a growth spurt too during the past month. She's gotten taller, her hair has grown quite a bit and her feet have grown. Even her finger nails grew like wild fire while we were out in NC. I had to cut them twice a week! Since we've been back, everyone has noticed that she's taller.

Her speech continues to flourish! She comes out with new words almost daily! Her latest phrase is "Uh-oh! I get it." She's so animated when she says it too! She had her first speech session Thursday as well, and she was coming out with all kinds of words and phrases I'd never heard before. She has SO MUCH locked inside her brain, she just needed a little oxygen to help it come out. :-) She was saying "Mine" during speech, and "what?" and "yes" and "I want it" and "I did it!" Oh, and one of her favorites now is, "I know." And she says it appropriately, that's the funniest thing. She started that one while we were out in North Carolina. While in the bath tub, I told her the soap was slippery, and she matter of factly said, "I know."

She's still doling out hugs and kisses too! You can't ever have enough of those, that's for sure!

Thanks to all of Taegan's earth angels for making these accomplishments possible for her.... it is most definitely the hyperbaric oxygen treatments that are awakening our daughter before our very eyes!!!!

Second Set of 40 HBO Sessions Completed

Taegan finished up her second set of 40 HBO treatments on Thursday morning at Miracle Mountain in North Carolina.
We ended up having to stay a few extra days because we missed 4 sessions due to bad head colds (both of us.)

This time I noticed an increase in her speech and an increased awareness of her surroundings. Also, her social skills appeared to improve, as she actually engaged in play with other children there at the clinic. It was so wonderful to witness that. She is definitely more 'spirited' and filled with an abundance of energy. So many small things improved this time around, which really have filled my heart with joy. One evening, I opened the car door to get Taegan from her car seat, and she looked directly at me in the eye and smiled the sweetest smile. I'm sure that doesn't sound too significant to those of you who don't know Taegan well, but it really was a major milestone in my book.

There are so many more instances I revel in, and I wrote them all down in a journal to keep for her as she grows. I imagine one day she will read through them and appreciate how far she's come, and all the achievements she attained.

She has been able to express more verbally during and after this round of HBO. She is speaking several 2 and 3 word sentences now. She put her arms around my neck last week and said "I give kiss." and leaned in and gently kissed my lips. She then pulled back and said, again while looking in my eyes, "I give hug." and squeezed my neck as tight as she could. Of course I turned into a puddle right then and there! It was such an amazing feeling to experience my child EXPRESSING her WANTS in intelligible words appropriately! She's continued to do this almost daily, which I am so thankful for indeed.

We'll be returning to Miracle Mountain at the end of November for our 3rd set of 40 treatments. Our 4th round of 40 will be completed by the middle of May next year.

I purchased a wonderful documentary video that was put together by the Discovery Channel called "The Healing Chamber." It is an in depth look at how hyperbaric oxygen is being used to treat various illnesses and diseases, including brain injury (like Cerebral Palsy.) Hopefully I can upload it and provide a link for everyone to be able to view it if you're interested.

There will be a car show to benefit Taegan on Sunday, July 29th from noon to 6pm in the parking lot of the Lone Star restaurant off US 31 South in Greenwood. All proceeds will be donated to Taegan's fund. This car show is for all car buffs and car enthusiasts. Anyone can enter their car into the show for a minimum registration fee of $5.

I am planning to organize a spaghetti dinner and/or pancake breakfast to benefit Taegan's fund in order to help pay for the housing facilities and car rental we will need for our next two HBO sessions (housing for one month, each session.) If anyone has any suggestions/tips/advice, please contact me! :-)

Taegan will begin preschool on August 13th. We have a boatload of appointments between now and then... geneticist, orthotics, neuropsychologist, OT, PT, SLP, CST etc. Summer has flown by... it's hard to believe it will be over soon!

Thank you to all of you who continually check in on us... we truly do appreciate it!

Enjoy the rest of summer 2007.....

Headed to the Blue Ridge Mountains

Taegan and I are headed out to the Blue Ridge Mountains of North Carolina for the month of July. She'll be receiving her second set of 40 HBO treatments at a facility there called Miracle Mountain Children's Hyperbaric. We'll be driving out on June 30th, and treatments will begin on July 3rd.

On July 2nd, I will have to drive Taegan to visit with an open minded Dr. who works closely with the the facility, in order to obtain a prescription for the HBO treatments. I called for directions to the Dr's office today, and was quite shocked to learn it is 2 1/2 hours away from the hyperbaric clinic! Should be an interesting ride all around... Both facilities are deep in the mountains, and having lived in flat, corn field land-Indiana most of my life, it will be a refreshing change.

I am a little nervous though... the friendly woman I spoke with on the phone this afternoon from the Dr's office advised me to pump the brakes while driving through the mountains, and not to push hard to the floor on the pedal, or I might burn up the brakes! I definitely want to be sure to complete Taegan's 120 sessions during the summer and spring months, and avoid the winter months! I don't want to go sliding off the side of a mountain or anything! LOL

Taegan's motorcycle ride was a wonderful success! Everyone worked so hard to make it run smoothly, and it turned out to be an excellent day! We raised just over 6k for Taegan! That will pay for all 120 treatments of HBO at Miracle Mountain. We are thrilled!

Well, there's a ton of packing to be done... will update as I can....

Much Love & Brightest Blessings To All!!!

Auction Items

Adina Francis is a long-time friend of mine who enjoys drawing in her free time. She's graciously donated several original art work pieces to be auctioned off to benefit Taegan's fund. The water color of Nascar driver Tony Stewart will be one of the pieces auctioned off at the June 16th motorcycle ride. All art work will be matted and framed.





Here is a preview of some of the items that will be auctioned off soon via eBay and local fundraising events.

Richard Oakland is an exceptional photographer with a unique eye from the UK. He has generously donated a limited edition, autographed, numbered print from his collection. It is entitled "Creeping Sun."

To view more of Richard's inspiring collection, visit one of his three web sites at:
http://www.clickinhistoryphotography.com
http://www.clickinhistory9.blogspot.com http://www.photoboxgallery.com/839059

This is a 2006 Harley Davidson mountain bike. It is barely used and in mint condition. Previous owner only rode it twice.

If anyone is interested in the mountain bike or the four beautiful pieces of art work listed here, please contact me via angels4taegan@yahoo.com. Also, dimension specifics can be provided upon request.

Thanks again to everyone for their continued love, prayers, and support! You are helping to change Taegan's life forever... and we will always be thankful for that!

Bike Ride To Benefit Taegan

For the locals: Tammie Lee Hall and Century 21 Realty Group Ruch-Hicks have organized a motorcycle ride on the south side of Indianapolis to benefit Taegan. The ride will take place, rain or shine, on Saturday, June 16th, 2007.

The ride will begin at 11am from Century 21 Realty Group Ruch-Hicks. Stops on the ride include: "Somewhere" in Bargersville, "Route 67" in Mooresville, "Jakes" at Southport Rd & Bluff Rd and concludes at "That Place" off Country Line Rd. and Emerson Ave. The registration fee is $25 per bike. This includes a free Angels Ridin' 4 Taegan T-shirt (additional shirts are $10/each) and a wrist band.

There will be a poker run, 50/50, and great door prizes at each stop. Free burgers and dogs will be provided by "That Place" to all registered riders after the ride.

Registration can be completed on-line or registration forms can be printed off from Taegan's web site http://www.angels4taegan.com with checks made payable to Angels 4 Taegan and then mailed to:

Century 21 Ruch-Hicks

1680 W. Main Street

Greenwood, IN 46142

Attn: Tammie Lee Hall

So, come on out for a terrific time while helping a great cause!!!

Back Home Again In Indiana

Taegan successfully completed her first set of 40 HBO treatments in Cincinnati and will resume her routine therapy sessions on Monday. (PT, OT, DT, CST, Speech, Nutrition Therapy, Hippotherapy, and Chiropractic care.)

I was a bit sad when the HBO sessions were complete because Taegan seems like a different child while receiving HBO. She was very content and social (which she hasn't been in recent months prior to HBO). Also, one of the best things to come from the HBO treatments was a major improvement in her sleeping habits. She was sleeping all through the night (except for 3 nights during the 40 treatments, but even then, she was only awake for an hour or so then!) She slept 8-10 hours per night, which was truly wonderful! She is such a different child when she has SLEEP! (Aren't we all?) In her 3 short years here on earth, she's never slept for an 8 hour stretch of time, ever!

Her appetite also sharply improved during HBO. I am positive she has gained weight. We'll see just how much when she meets with the nutritionist next week.

Unfortunately, she has resorted to her old sleeping habits. She's still pretty much a pleasant child, just a bit moody at times. I've recently learned that her moodiness and insomnia could be coming from a copper toxicity.

While at the Cole Center for Healing, I had a tissue sample sent to the lab for extensive analysis. The results were really quite shocking. Taegan has very high copper and aluminum levels, and has very low sodium and potassium. Her adrenal gland is also not functioning as it should be and is causing a glucose intolerance in her body.

I've purchased the suggested supplements to help correct the various imbalances in her body and hopefully we'll begin that regimen along with major dietary changes next week after consulting with her nutritionist.

Another thing I did not realize is that copper affects the ability of the muscles to function properly. It even affects the myelin sheath of the nerves (which is already a concern/problem area for people suffering from CP!) So, I'm hopeful that once the supplements and dietary changes correct her imbalances, we'll see some positive effects reflected in her mood, improved sleeping ability and muscle function.

She showed such positive improvement during that first week of HBO, especially with her muscle tone. She was able to get her left foot flat on the ground for the first time in her life. By the second week of treatment, her braces no longer fit properly (I am guessing it is because of the changes in her muscle tone, but I'm no expert!) She can no longer wear them because they rub blisters on her heels, especially her left heel. However, she isn't really putting her left foot down flat anymore on her own. I have to physically make her do it now, which still baffles me. When she walks, she's back to walking on her tip toes on the left, and is very shaky and unsteady.

My only rationale for this is that perhaps other muscles in her legs loosened up too, considerably, during HBO and she has never had to use those muscles before. I'm wondering if she's just unsure of how to use those muscles to steady herself and walk... they obviously would be weak from never being used before. Maybe we just have to focus on strengthening those muscles in order for all the muscles in her leg to work synergistically. I'm hopeful that her physical therapists might have some insight into what is going on. The HBO technician reminded me that it is possible to see continued changes from the HBO treatments up to 1-2 months after the cessation of treatment.

Her appetite continues to be healthy and she's even trying some new foods now. Of course, we'll be altering her diet quite extensively soon (no refined carbs and no sugars, including fruit and fruit juices.) Dietary and supplement recommendations were included in the tissue analysis process. They recommended Taegan be retested in 3-4 months, so that supplements can be adjusted or stopped altogether if no longer needed.

Meanwhile, we're continuing to raise money for Taegan so that she may continue to receive the HBO treatments. I'm hoping she can receive at least another 40 before she begins preschool in August.

I mentioned briefly in a previous post, I've met a very generous man who has a HBO clinic in North Carolina. He's offered 120 HBO treatments to Taegan for $6,000 (for a limited time, as his company is a cooperative.) The 120 sessions do not have to be done consecutively, but can be broken up into sets of 20 or 40 until completed.

I'm researching the possibility of flying there with Taegan when the time comes. There are several non-profit organizations out there (I believe that is correct) that offer free flights to parents/children of special needs, to help them receive the necessary medical care they require. I'm still just learning about this possibility....

Many thanks to the Women's and Men's Eagles Club of Fairfield, Ohio... they raised $505 during their recent benefit for Taegan on April 12th. They are a wonderful group of people who have taken a special interest in helping Taegan.

Taegan seems to be missing Jake and Alli... she looks all around the living room and kitchen calling "baby!!! baby!!!" and I think she's looking for her 6 year old friend/playmate Alli. She often times called her baby while we stayed there with the Ball family in Cincinnati.

Taegan was evaluated this week by the Special Services team for our local school system. They will use the results to qualify her for services through the school system when she starts in the special needs preschool program this August. We'll have her case conference to determine eligibility and to write goals in late May.

It doesn't seem possible, that my baby is ready to begin school!!! I still cannot believe she will be turning 3 in June! The NICU days really don't seem all that long ago... I still have dreams (nightmares!) about her time there. It absolutely doesn't seem like 3 years has passed since her traumatic birth. Where does the time go?

I'll post another update soon... ~Be well~

**Pictures: 1)Taegan inside the HBO chamber. 2) Taegan and Certified HBO Technician Scott Fuhr. 3) Cara, helping Taegan with the steps at the Eagles Club benefit on April 12th. 4) Alli and Taegan having fun in the bubble bath! 5) Taegan examining her new Barbie on Easter. 6) Alli, Cara, and Jake... Jeff was working when this pic was taken. Taegan adored him too!