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April 21, 2007

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!

April 11, 2007

Eagles Club Benefit for Taegan

The Men & Women's Eagles Club of Fairfield, Ohio have been instrumental in helping to raise money and awareness for Taegan and our cause. And, they continue to be supportive and interested in her progress while we are staying here in Mason, Ohio as Taegan undergoes her first 40 hyperbaric oxygen treatments.

They will be hosting a cook-out at the club on Thursday, April 12 at 5pm. Proceeds from the cook-out will be donated to Taegan's medical fund.

The Eagles Club is located at:
8560 Michael Ln, Fairfield, OH

If you're in the area, stop by and enjoy some good food for a great cause!

April 10, 2007

Taegan's Progress After 28 Treatments

Hello again everyone. Thought I'd take a few minutes to write an update on Taegan's progress. She's completed 28 hyperbaric oxygen treatments as of this date. I'm continuing to see positive changes from the HBO therapy.

Some more obvious gains are her improvements with speech. She is very vocal now, and jabbers almost constantly. She's saying new words almost daily. And the fact that they are spontaneous is even more thrilling. She will say "Hi!" often times when she enters a room (to whomever is in the room, and even to the dog!) In the past, you'd have to prompt her, sometimes 5 and 6 times before she'd say "Hi!" if she'd even say it at all. Now, she's saying it on her own many times, with no prompting.

She has continued to say "Yes" when asked a yes/no question, but much of the time requires prompting to do so, but STILL! That is a MAJOR improvement for her. Her speech therapist will be thrilled, I'm sure! (We've worked on yes/no for the better part of a year it seems!)

Taegan has said "Open!" to the HBO Technician twice now, as she waits for him to open the chamber door. It's too cute to hear her little voice... and to hear her saying an APPROPRIATE word in the context of the situation, all on her own. She was even proclaiming "Open!" to each door we came to at the clinic today. It's so wonderful to see her grasping the 'cause/effect' of her language.

Her social development has even improved! I'm not sure how much of it is from being around a 6 and 9 year old daily, or how much is from the HBO, but she definitely is making gains socially. She continues to have better eye contact, and is smiling at people and interacting with them, and seeming to ENJOY it, whereas prior to March 27th, she showed little interest in interacting with peers. Her shyness with the opposite sex is diminishing as well. She no longer cries when Jeff talks to her or when the male technicians at the clinic help her in/out of the chamber.

Another major improvement has been her increase in appetite. She is eating so well, I would swear she's gained at least 5 pounds!!! I am anxious to see what the nutritionist reports when she meets with her on April 25th. She's still pretty picky with what she will eat, but she definitely has a healthier appetite since beginning HBO treatments. She ate an entire can of green beans for supper this evening, along with a Nutra Grain cereal bar, 5 Ritz crackers, 4 nice sized strawberries, 6 ounces of chicken noodle dinner and 6 ounces of apple juice!

The improvements with her muscle tone have seemed to plateau a bit this week. She seems to be fighting off an illness... perhaps a cold? Her muscle tone in her legs actually began to feel tighter at the end of last week, which was concerning to me. But she was showing improvement in other areas, as mentioned above.

In the past, when Taegan is ill, it presents in her muscle tone first, and then she has the more obvious symptoms of illness like runny nose, fever, cough etc. So, I have been worried that she is trying to fight off an illness. So far, she's only had a bit of a runny nose. The drastic change in weather hasn't helped anyone, that's for sure. It was 85 degrees here in Cincinnati for 3 or 4 days last week, and overnight the weather pattern changed and the high for the next few days was in the upper 20's! And it snowed off/on for 2 days! It is plain crazy.... Snow on Easter... Go figure.

I know that changes are occurring in her legs though, because her AFO's (leg braces) no longer fit properly! I was trying to keep her in them as much as possible to get prolonged stretching of her leg muscles, and she was crying and trying to get her AFO's off, which is unusual for her. When I took them off, I noticed a red blister on her left heel. It's since scabbed over, and still looks pretty painful. So, she's not been able to wear them since. When we get back to Indy, I'll have to take her back to the orthotist and see what can be done so that they fit properly again.

Her stretching exercises are still much easier to do now, which I'm thankful that hasn't changed with this recent muscle tightness she's experiencing. She's not been standing flat footed as often as she had been the previous week. She's loosing her balance quite a bit now, and has resorted to tall-kneel crawling some.

Today I noticed she winced as she put weight on her left leg and her heel went down to the floor. She picked her leg up real quick and decided to crawl instead of walk. I'm not sure what is going on with that.... I might try to talk with Dr. Cole about these things, and see what his thoughts are about her progress.
We've got 12 treatments left....

Meanwhile, I've recently come across a facility out in North Carolina that has the same type of HBO Chamber/set-up as the Cole Center does, and they are offering 120 HBO treatments for $6,000 (limited time only!) That is an AMAZING deal for HBO! The 40 treatments Taegan is receiving presently cost a total of $4,620. I have spoken with the owner of the clinic in N.C. and told him I'm going to try my best to raise 6K before the end of summer so that Taegan can receive the 120 treatments before she begins preschool this August. He said he'd work with me if the offer was expired when we were able to come to his clinic.

So, once we finish up here in Cincinnati, I'm going to try to organize several more larger scale fundraisers back in Indy. If any of you would like to volunteer to help me out with fundraising, please contact me! I'd like to organize a spaghetti dinner and a silent auction.

There will be a motorcycle ride to benefit Taegan in June. I will post more details on that as I get them.... until then, keep checking back for updates.

Big hugs to everyone for all their prayers, love and support for Taegan!!!

April 5, 2007

HBO Photos

Here are some recent photos of Taegan in the hyperbaric chamber as well as photos of the chamber itself. Taegan really enjoys the therapy... she sometimes cries when we have to get out of the chamber! She is always in good spirits after the treatments... perhaps it's a side effect? Enjoy the photos. The last photo is of her standing flat footed on her left leg. I am shifting her weight to the left so that she HAS to weight bare through that leg and foot, as she still will not do it on her own. I'm sure it's awkward for her since all she's ever known how to do is stand on her tippy-toes on the left foot. I hope her progress continues to be as wonderful as it has been to date.