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Wednesday, September 16, 2009

Bouncing Off the Walls

This week has been a week of appointments! Monday we met with the new PT and Speech Therapist....meh. It's hard because they don't know Christian so they don't know where he's come from. Day 1 was Monday for them, meaning that this is all they know of him. Made me miss the therapists in Phoenix. The Speech Therapist was okay but when it came to talk of his PMV, she talked to me like it was the first day he had ever worn it. I know she doesn't know any better and maybe she's not used to talking to people who take care of their own kids but we've been doing this for a month, lady. She also tried to tickle him and you don't tickle kids with neuro issues. They are already hyper stimulated so tickling only aggravates them more. Do I need to teach her a thing or two?

Today we had an appointment with the pulmonologist to assess Christian's trach. The funny thing about Christian's trach (and the doctor told me this would happen) is that when he's in the carseat, he ends up capping himself. Somehow he's uncomfortable with the PMV on while in the sitting position, probably something to do with the positioning of his airway. So I popped it off the other day. I heard his breathing and it sounded like the kind of breathing he does during capping trials - slow, deliberate, and deep breathing. Sure enough, Christian's head (which he can't yet hold up) had fallen over his trach and was blocking it...and he was breathing on his own. So I just let him fly. He wasn't in distress, in fact he was very relaxed. So now I guess we're doing our own sort of capping trials in the car. Anyway, I missed the appointment today. I thought it was somewhere else when it was actually across town so it's rescheduled for Friday. I just hope this pulmonologist is aggressive and open to considering moving toward decanulation (removal of trach). I hope she doesn't tell me, "Let's wait a few months and see then." Then I'll have to find another pulmonologist.

Because I missed his appointment today I decided to take full advantage of my time and visit the HBOT center in Tucson. I LOVED IT!!! It's actually run/owned by a neurologist. Funny - a neurologist that believes in alternative medicine...hmmmm. I even got to meet her, which I was excited for and reluctant to do at the same time because you know how I feel about neurologists. But she was the most positive neurologist I'd met! She remarked that Christian's tone and flexion (stiffly positioned arms/legs) wasn't as bad as typical near drowns so close to the accident.

(SIDENOTE: This meant so much, especially from a neuro, to hear something positive from a medical professional because of two paragraphs ago when the therapists didn't know Christian and how far he's come. Remember that? Okay, I'll continue)

She does EEG's and labs there at her office and can follow Christian's progress and manage his seizure medications (he doesn't have seizures, but he's on a medicine to prevent them anyway). She believes in HBOT (What?! A neuro that believes in HBOT you say?) and all of her patients had nothing but good things to say about the place and about her. I was honest with her...I told her my experiences with neuros haven't been positive. She laughed a little and understood, but it made such a positive impression that she took the time out of her day between appointments to meet with me. They also have a nutritionist on sight that can offer supplements that promote brain growth and proper nutrition for his condition and there were plenty of patients there to attest to the place. Oh, by the way, it's called Northstar Hyperbarics.

The most amazing story is Ryan's story. He nearly drowned at 2 years old and his journey is chronicled on the Northstar HBOT website. Ryan is 5 now and just happened to be in the chamber doing a session when I dropped in so I was able to meet him. Let me just tell you that this child was brought in to Northstar in a vegetative state. I almost cried when I saw this kid running, yes, running, down the hall. He had a huge smile on his face and then he cried loudly when he didn't get his way. He was bouncing off the walls! It was amazing! Now, he's had around 300 treatments in the last 3 years so he's done his time. I got to meet and speak with his mother and she was so nice and sweet and willing to share their story. I asked her what his success in recovery was attributed to and whether she'd tried any other types of therapies (besides regular PT, OT, and ST) and she said she attributes all his recovery to HBOT and his stubborn nature.

It was just so amazing to see this little boy walking and yelling and running and smiling. You couldn't contain him! I'm so excited and eager to start Christian again in the hard chamber. The soft monochamber is what we have at home which is awesome for supplemental treatments and maintenance in between sessions. But the hard chambers are said to be more effective and to be done in 40 consecutive sessions and then 40 more at a later date. So we HAVE to do both. I just want to give Christian the best chance possible. So I'm determined to come up with the funds so that we can start sending him to the hard chamber immediately AND do soft chamber treatments at home.

Tomorrow we have our appointment with the eye doctor. He'll probably get a diagnosis of Cortical Visual Impairment, which I've mentioned before. Let me just say...I don't like diagnoses. In Christian's situation, I feel like it becomes a limitation for him. I'd rather just say he's got a brain injury and let it all unfold from there. I like the unknown. But the funny thing is that the more your child is diagnosed with, the more services that are available. So Christian getting diagnosed with CVI will open up more services to him that will improve and strengthen his vision. So this appointment is more of a required step to get to the next point.

Friday we'll have more appointments, one with Early Intervention to finally get some in home therapy set up and then finally our pulmonology appointment.

Christian is doing well. He has seemed a little agitated for the last two days. I think he's gaining more sensation in parts of his body and pain is starting to make more sense or he's trying to express it more because his legs seem to be more sensitive. And our family is looking forward to an uneventful weekend with nothing planned. I love when nothing is planned.

I feel so blessed to have witnessed Ryan first hand and I only hope and pray for that kind of recovery for Christian. I know God will provide a way for us to get Christian what he needs so that Christian will one day be running around and smiling...bouncing off the walls.

3 comments:

Reba0729 said...

Thank you for sharing Ryan's story - it's so touching...and amazing! I can't wait to see Christian journey that far!

Rebecca

maz said...

Phew....sounds like a busy, busy week. Hope all your therapists start to 'gel' more with Christian and you and get to know him better, so that the sessions can be more productive and effective for you all. Must be hard to start from scratch almost.

The HBOT venue sounds fab...and the one cool open-minded neurologist (we heart her!). Yea! Sounds all very promising. And so very heart-warming hearing Ryan's story. Hope springs eternal!

Big hugs to you and Christian - guess its a good sign that his brain is making new connections, but must be hard to see him agitated too...

Maz
x

sunflourchic said...

such good news about the neurologist! ryan is amazing! can't wait to see a video of christian running down the hall. i know he will!

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