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March 30, 2007

7 Down, 33 To Go

Taegan and I are here in Cincinnati, staying with my wonderful friend Cara and her beautiful family. They have been so generous to us, opening their house to us for the month while we undergo the hyperbaric oxygen therapy treatments.

Taegan had her evaluation with Dr. Cole on Tuesday, and also began treatments that day as well. The evaluation went well, and I really enjoyed the time with Dr. Cole. He is a very knowledgeable man. He feels that Taegan will be a wonderful candidate for HBO and that her progress should be remarkable. He told me a story about a man with CP who received HBO for the first time at age 20, and the improvements for him were significant. He also explained that the benefits Taegan receives from HBO will be PERMANENT. Even if she regresses during illnesses, she will not lose any function she gains as a result of HBO. That was a relief to hear, as I wasn't sure as to the longevity of HBO. He also explained that each person is different, and each person benefits from a different number of HBO treatments. For example, he can't say that after 40 treatments, Taegan will have received all the benefit from it that she possibly can... it may take 50 treatments, or 120 treatments. No one knows... the body will tell you when it's done all the healing it can do with these treatments.

We also met with a homeopathic doctor who discussed supplements with me and several other testing options to help Taegan achieve optimum health. I will probably put her on a few supplements that will assist in healing. Omega 3 fatty acids is one that was mentioned. This helps with the mylenation process (protective layer covering the nerves in a person's body.) With CP, myelination is affected.

As of this evening, Taegan will have completed 8 'dives,' or treatments. We do two treatments a day, about 4 hours apart, and will complete a total of 40 altogether.

She is doing quite well for the 90 minute sessions. The HBO is technically 60 minutes in duration, however, we're in the chamber for approximately 90 minutes. It takes about 10 minutes to drop the atmospheric pressure down to 1.5 ATA (about 20 feet below sea level) and it takes about 15 minutes to return to sea level ATA. Taegan fusses a bit while we descend, as it is slightly uncomfortable on the ears. I have a whistle that she blows while in the chamber (and I squeeze her nose while she blows) that helps to release the pressure build-up in her ears. I also bring in a bottle of juice, as it also helps to drink during the pressurization and de-pressurization periods.

The chamber has 2 portholes that you can see out of (and outsiders can see in.) Outside one of the portholes hangs a TV. We watch videos through the porthole, and the sound is played inside the chamber on a speaker system. Once we are at 1.5 ATA, I place an oxygen hood over Taegan's head and hook up her O2 tubes to the bottom of the hood, and the 100% oxygen is piped in through the tubes and stays inside her hood. So, she is always breathing 100% oxygen while the hood is on. Inside the chamber itself, there is normal room air. I do not wear a hood while I'm in there with her (I'm sure I'd have to pay for that!) But, the technician did say I can also benefit from the treatments just by breathing the room air at the 1.5 ATA depth.

I have felt more tired since doing the treatments (which is a side effect of HBO actually.) In fact, Taegan has slept through the night the past 2 nights now! That is AMAZING for her. As many of you know, her typical sleep pattern prior to HBO has been to sleep for 4-6 hour periods (6 on a good night!) and then be up for several hours before falling back to sleep. She has very restless sleep. Last night, she went to bed at 10:30pm and when I turned in for the night around 1am, she hadn't moved from the position in which she fell asleep! I heard her change positions about 4am. She didn't wake once throughout the night. In fact, I had to literally drag her out of bed at 8:45am in order to get her dressed for her 9:30am treatment! She was not a happy camper!

She is jabbering a lot more, and is using spontaneous words! She answered a yes/no question for me yesterday for the very first time! I asked if she would like a drink and she said "YES" as plain as day! She also is saying Cara and Alli (the names of my friend and her daughter whom we're staying with here in Cincinnati)! She has been putting a few words together to say short phrases like "I did it." and "I go," "I eat," and even a "Mommy, I eat." She has never requested to eat before! She is counting more clearly now. (She counts to 20, skipping a few along the way). She's saying her ABC's more clearly as well.

I've also noticed she's beginning to make better eye contact with people, especially when they are talking to her. Usually, she appears to 'ignore' people when they are talking to her.

Her muscle tone is slowly improving. I had hoped for more drastic effects...but I keep reminding myself she's only had 7 treatments, and her feet are the furthest thing from her heart and brain! Patience, patience. :-)

Her muscle tone in her right leg and foot has improved by about 15 degrees, easily. However, her right foot was never significantly tight. It had some tone in it, and requires her to wear a brace, but nothing as significant as her left foot.

The high tone in her left foot is definitely changing though. I can get it to stretch with more agility than before and I'd say she's gained a few degrees of movement in it so far. When she is barefoot and walking, she is still up on her left toes, but I can tell it isn't as high. Her gait is very unsteady now, and she is falling a lot. So much so, that she has resorted to 'cruising' again... she tries to keep one hand on furniture or a wall while she's walking barefoot now, to help steady herself.

At first I was alarmed by this change in her walking pattern, but then I realized, her muscles are loosening up, and she's having to learn to adjust to that. Before this, she's compensated for her muscle tightness and walked high up on her tip-toes and the top half of her body sort of bent into a "C" shape as she walked, to balance herself. Now, she's not 'bending herself' into that shape as sharply and her heel is slightly closer to the floor.

When she is standing with both arms against a piece of furniture etc. she is standing FLAT FOOTED! She's never been able to do that prior to HBO! It's amusing to watch her do this, because I don't think she realizes she's doing it at first, and then you can tell when she realizes, because she will pull her foot up off the floor and rest it on top of her right foot! I also think that perhaps it feels like a muscle stretch while she's standing flat footed. I compare it to how you do a pre-jog warm-up stretch. I imagine that might be what she's feeling, and causing her to notice she's flat footed while standing.

I'm thrilled to see these small changes already after only 7 hours of HBO! I continue to pray we see some significant changes by the 40th hour!

I will be posting pictures of Taegan inside the chamber and doing her treatments shortly. I've gotten permission from the technician at the center to take some video as well. We just have to do it at a time when it's not so busy at the clinic. So, hopefully this weekend will allow that opportunity, and I'll post the pictures here for everyone to enjoy.

Thank you again to all Taegan's earth angels for helping to make these changes a permanent reality for her! After all, it is the kindness all of you showed by donating to Taegan's fund, to allow us this opportunity. We continue to be thankful for each and every one of you.

March 21, 2007

How HBO Can Benefit Taegan

Hyperbaric Oxygen Treatments can help Taegan by promoting the growth of new blood vessels, decreasing swelling and inflammation in her brain around the damaged areas, deactivating toxins, and by increasing her body's ability to fight infection.

To view a more in depth account on the specifics of HBO and what it can help promote, click here:

HBO Rescheduled

Taegan's HBO treatments were scheduled to begin on March 19th, however she came down with a bad head cold on Friday, March 16th and I had to cancel the appointment. I now have her cold as well....

The appointment is rescheduled for March 27th. We're keeping our fingers crossed that we'll both be healthy enough to begin HBO that day!

We cannot do HBO with any kind of head congestion etc. because we have to be able to equalize the pressure in our ears as the atmospheric pressure inside the chamber drops. We will be 'diving' to a depth of 20 feet below sea level. It is equal to 1.5 ATA

Fingers crossed that we both are completely healthy by Tuesday morning!
As always, thank you all for your continued support and prayers!!!

March 9, 2007

See HBO In Action

Watch this Fox News video clip on how HBO therapy helped this 9 year old girl recover from encephalitis.

Click the link below to view more details about JeAnnah's journey and how HBO helped her forego a life of permanent disability.

See how one mothers strength and determination in pursuing HBO ended up saving her daughter's life.

We're Headed To Cincinnati!!!

I am so excited!!! Thanks to the kindness of family, friends and strangers alike, we have raised enough money for Taegan to be able to receive her first 40 hyperbaric oxygen treatments in Cincinnati.

March 19th is the day!!! Taegan has an evaluation scheduled with Dr. Cole and could possibly receive her first treatment that same day!

I will try to provide updated blogs throughout the course of her treatments so that you all can come along on this journey with us (a virtual journey, but nonetheless...)

Thank you to all of Taegan's angels here on earth who have helped make HBO a reality for her! You all hold a special place in our heart.

Every donation was/is appreciated no matter how large or small. Every dollar donated will help make a difference in Taegan's life! But most of all we are THANKFUL...thankful to all of you who made this possible for Taegan!

Please continue to pray for Taegan. Pray that this treatment is the key that will unlock her caged wings... and afterwards she will be able to spread her beautiful wings and soar!

~Blessings of Love and Light~

March 2, 2007

Dr. Appointment Updates

(Pictures are from a recent Physical Therapy Session.) Just wanted to post an update about recent doctor visits.

The ENT called last week to say that he consulted with several other doctors and they feel Taegan's sleep apnea isn't significant enough to warrant any further action at this time. He said they feel she should out grow it in 6-12 months. He'd like to see Taegan again in 6 months. I'm not so sure how comforted I am by that answer, since he stated to me that the sleep study was so "wishy-washy" that it really told him nothing. I'm also sure he realizes that insurance will not pay for another $3,300 sleep study until next year, and I surely cannot pay that out of pocket expense! So, that is where things stand with the sleep apnea issue.

The neuropsychology appointment went well. It was basically an appointment for the neuropsychologist to meet with Taegan and get a little bit of background and history on her. They want to set up a 3-4 hour evaluation/test for her in the next month. It could be longer than a month, as I told them we hopefully would be in Cincinnati by then. :-)

The physiatrist suggested we do Botox injections along with serial casting on Taegan's left leg/foot. Her tone is increasingly worsening, as is expected as she grows. The muscles aren't relaxing as she gets taller, which is a typical occurrence in spastic diplegia diagnosis. More than likely, Taegan will need to have Botox injections and serial casting until she is done growing (through young adulthood). Once she's done growing, she most likely will have to "maintain" her muscle tone through the use of Botox injections and night splints as well as wearing her braces daily (AFO's).

I'm hopeful that HBO will alter the course of things, and perhaps make long term differences in Taegan's muscle tone. That has been the case for many other CP children I've come across via research on HBO treatment.

The physiatrist also suggested we move forward with the genetic testing, just so that we have a complete 'picture' of Taegan, and also so we can best help her. She wrote a prescription for a medication that is supposed to help Taegan with her sleep difficulties. It is actually a blood pressure medication, but has been used for it's side effects of drowsiness. I've gone the natural route with little success... so reluctantly, I've agreed to try commercial medications. So far, I haven't seen any improvement with her sleep patterns/habits, but perhaps it needs to build up in her system before it takes effect.

She also wrote a script for another medication to help with Taegan's continuing bowel issues. Hopefully something will give her some sense of normalcy in that regard. Thankfully, Taegan's hip X-rays look fine at this time. She will need X-rays every 6 months to make sure her bones are aligning properly in the hip sockets.

Taegan continues to have eating issues, and at present is eating about 8-10 foods consistently. I worry that having Pop-Tarts for 3 meals a day isn't 'cutting' it... but I've been reminded by several of you that kids just go through these odd stages. I just hope it doesn't last too terribly long.

The recent fundraiser at Chick-fil-A netted $206.59. Many thanks to the wonderful people at Chick-fil-A (Greenwood) and especially to Katy Johnson, who organized the event and made sure everything ran smoothly for us. Also, thank you to everyone who braved the snowy weather to come out and offer support for Taegan.

Thanks to all of you for the recent private donations you've sent to Taegan's fund. I'm thrilled to report that we're about $500 shy of having the full amount for the HBO treatments!!! I spoke with the Cole Center this week and they're all ready for us.... have our insurance info etc. Wonderful news: Our insurance will pay for the consultation and evaluation with Dr. Cole. (it just will not pay for the HBO treatments!) So, we're hoping to be in Cincinnati sometime this month!