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.