Tuesday, January 22, 2008

Mostly For Brain Geeks

I've been dying to write an update since our first visit from Maria Margarita last Tuesday. We had our second session with her earlier today. I am astonished. When I read the Brain Curriculum at www.upledger.com I was hopeful but a little reserved, wondering how someone could assess the brain precisely enough to locate specific lesions. Our experience so far has exceeded even my wildest hopes.

This listing is for the brain geeks, and parents who have morphed into such:
(Others can skip everything in italics:)

Todays' work:

Assessed and worked on lesions on the R. cerebellum, R. cerebrum. R. sensory integration area

Abbie's spinal cord had been pulled up through the foramen magnum (hole at bottom of skull), and was swollen, preventing it from returning to its proper place. Maria dealt with this as well as resolving the adhesion that had formed between the foramen magnum and C1.

Noted R. posterior cerebrum / temporal lobe swelling between the atlas and the foramen magnum

Abbie worked on the anterior/posterior mobility of her left cortex, and the midline/posterior rotation of both cortexes.

There was some restriction in the L. temporal lobe area, which is affecting Wernicke's Area (speech). Abbie worked hard to get her L. temporal lobe back into it's proper space.

Much work done on her ventricles (fluid containing vessels in the middle of the brain). There were anterior adhesions, so that the R. and L. were stuck together. The posterior ventricles were rotated in opposite directions: R. was inferior and L. was superior. All of this together resulted in tremendous pressure on Abbie's skull, impacting the vascularization (blood flow) and Wernicke's area, as well as the L. cerebellar peduncle (I did not know until today that my body contained such a thing as a "peduncle"!)

L. cerebellar peduncle had issues at both inferior and superior attachments, but particularly at the superior -- it had been stretched to its max, but not torn

Maria worked on the membranous system to address some of the ventricle issues. The R. middle inferior ventricle stretched to allow fluid back in. The L. side was swollen and the right side had no fluid. The fluid rebalanced very well during treatment.

It was interesting that Abbie's lungs exactly mirrored the condition of her ventricles. The left lung was swollen and the right had reduced volume. We have been observing this for months now, but were at a loss as far as how to treat it.

Maria balance Abbie's lungs, and stretched the Media Stinum (sp) - the connective tissue that runs from the thorax in front to the spine in back to make the compartments for the lungs. It had become quite constricted, which showed in the shape of Abbie's ribs as well as the tightness across her back.

....and that was all just today!

Last time we worked on her occipital lobe, which has been deviated and was compressed, as well as giving her frontal lobe more room and lifting the weight of her forehead off of her eyes, allowing her optic nerve to function better. And, boy..has it ever! Her vision is noticeably better...even the store clerk at Banana Republic remarked about that.

In the first session Maria worked quite a bit in Abbie's mouth and around her cheeks and nose. As with the first session of Rolfing, I saw physical differences in Abbie at the end of treatment...amazing!

It is a wonderful blessing having someone to talk indepth brain stuff with. I have avoided gaining precise knowledge for years, because it just hurt my heart...I already knew many things were "broken", so I didn't want to dwell on it. But, now I am consuming anatomy texts like water.

Maria is an exclamatory answer to a prayer I had not even prayed yet, nor knew how to pray. Her skills, insight, and compassion are remarkable...I feel like Abbie has been waiting around for Maria, waiting for a partner to help her. Abbie knows exactly what she needs to do, and today even turned her head in specific ways to lead Maria to the "next spot" to work on. Maria says she's never worked with a child so committed to working long and hard (1.5-2 hours at a time), and is overwhelmed with how quickly Abbie responds to the work.

After our first session, we went in the other room to chat. Her first impression is that Abbie is "so strong." I just smiled at the validation of all we knew. She continued by saying that Abbie is very, very present, aware strongly of who she is and is adamant that she is NOT a baby, but a big girl. Again..more validation. Maria feels that Abbie is "burning to talk, because she has something very important to say..." Can't wait to hear it!

Maria has worked with brain injury patients for ten years, so I believed her when she said she did not make the following comment lightly -- she has seen too many families sustained only by hope to do so -- she said she feels there is great hope and much promise for Abbie. There is LOTS of work to be done, but Abbie is responding so well.

Maria Margarita is a European woman, imbued with the class and grace that seem to be their birthright. She just moved to Honolulu last month, so if you live here I will gladly put you in touch with her..email me at varasix@aol.com. If you live elsewhere..I would recommend contacting the Upledger Institute to see if a trained provider lives near you.

This is the biggest leap forward, in my eyes, since we met Dr. Tennant. God is so gracious to forgive my weariness and temptation to quit, and send not only sustenance but a renewal of hope!

One last quick note...please pray for my aunt, Lavonne... last week I spent time on the phone talking with her husband, Elmer and Lori, one of her eight children, about putting a trach in...boy, there is wisdom I wish I didn't have. She has since gotten one in, but is still on a vent with heart and lung issues. Many of you know how winding this road can be, so please remember them in your prayers.

Friday, January 11, 2008

New Beginnings

"What to you mean Christmas is over??" Abbie's look of concern at the words "It's bedtime..." But she did sleep very well in her new ballerina flannel PJs...thanks Grandma!

Aloha!! I'm now sufficiently recovered from my Sugar (Bowl) high and low to put together a cogent update. What a couple of weeks for our family! Abbie did wonderfully while we were gone. Fortunately, those caring for her were wise to withhold just a bit of information from me while we were gone. Each day Abbie would cry for a period of time because she missed us. One of the days Debbie finally took her into our bedroom so she could feel "closer" to us...it worked. Most importantly she stayed healthy and looked great when we got back -- thank your for your prayers.
We've decided, despite the outcome of the game, that we would travel to the Sugar Bowl again tomorrow...and I'm sure the reason why didn't make it onto the national telecast. I will never in my life forget what happened as the game ended. Even though we were beaten soundly by a talented Georgia team, I don't think one white-shirted Hawaii fan left early. As the seconds ticked to zero, as one we stood and applauded our boys who'd endured such a rough night. And then came the music...the band sounded the first notes of "Hawaii Pono'i", and again as one we serenaded our boys with love and pride. Many times this season, late-game heroics proved my belief that Love Always Wins. But, in the Superdome, with painful evidence still illuminated on the scoreboard, I was part of a love that transcends winning and losing, which showed me that, all appearances to the contrary, where there is great love, there are no losers

A great blessing of the trip was catching up with our friends, the Garguilos, who now live in Gulfport, MS. They live 2 blocks from the beach, and moved in 24 days before Katrina. They know that number specifically because there was a 30 day waiting period clause in their insurance. The row of houses that used to stand between them and the beach ended up on their house. They could not see their house and had to chainsaw a path to it. With a lot of sweat equity and emotional investment they have rebuilt not a house, but a home -- a mix of new walls and doors and windows salvaged from their yard. Fred and Michelle's friendship was shown as gold in our fire after Abbie's injury, and it was amazing to me the commonality of emotions we share in lives changed so dramatically, and instantly, by water.

We are looking forward to big things for Abbie in this New Year. We continue to pursue the baclofen pump issue. I spoke last night to a mom whose son was traumatically brain-injured 10 years ago, and just had his third one implanted (the batteries last 5 years). It was great to be able to ask another mom questions about complications, effects, and simple things like, "Does it make him resistant to lying on his stomach?" She had glowing things to say about the impact it's had on her son's life. I've also been emailing with another precious mom who has been willing to share in detail the story of her son's implant, even though he passed away 5 months ago. Opening such a wounded part of your heart is a heroic act. ..thank you, Susan. I am hoping to link up with the Medtronic rep next week and move forward as quickly as possible.

I am always in awe of who the Lord brings to this tiny dot on the map...before I even know to ask. Sally, our Rolfer, was telling me about a new friend she made recently at an intensive workship focused on the brain. Maria Margarita has been assisting Dr. Bruno Chickly for several years. That didn't mean anything at all to me until I researched the "Brain Curriculum" being taught around the world by Dr. Chickly, with the endorsement of the Upledger Institute. I went to http://www.upledger.com/ to research this curriculum and was completely fascinated -- for instance, Dr. Chickly teaches methods to identify specific lesions in the brain, and then release them. I instantly began mentally plotting a way to get Abbie to see him. Turns out that Maria Margarita just moved to Hawaii last month, and is setting up a practice here. We had a terrific conversation the other day where she detailed her decade of work with brain injury survivors, including veterans. I am very intrigued by the possibilities in specific areas like Abbie's use of her tongue, and in general areas like figuring out the current status of her brain. Maria will be coming to see us next Tuesday, so I will certainly keep you posted.

New Year's Eve found us in a tiny jazz club, listening to true New Orleans music. As we counted down the seconds I pray with fervor that shook my body..."Let this be Abbie's year." As the trumpeter filled the air with "Auld Lang Syne" I gratefully laid down the weariness of a year's labor, of hope deferred, of joy and disappointment...it is time to begin anew, with lightened shoulders, clear eyes, and fresh hope. I am so thankful for the the turning of the page, the flipping of the calendar, and for better or worse, being able to look at the 2007 box as "completed." Time to move on carrying only the wisdom gained, relationships deepened, and faith matured. We pray that God would bless you abundantly this year, and that you would receive Him joyfully each day. Pressing foward with great anticipation and enduring hope that this will be Abbie's year

More from the Game:

Matthew, all painted and beaded up, ready to go the game. The tattoos on his face required baby oil to remove. Since we got back from the game at 1:30am and left for the airport 2 hours later, the tattoos stayed in place during our journey home. In the New Orleans airport, it made perfect sense to all the other passengers, many of whom were also wearing green, black and sad faces. In Houston we got a few strange looks. By the time we were walking, or actually running, through LAX people were giving sideways glances to Matt and RJ, perhaps wondering if they had very odd, Polynesian birth marks. Finally arriving in Honolulu, we found several news stations waiting at baggage claim. A very insightful reporter picked out Matt and RJ, put them on camera, and then said to Matt, "You look like the talkative one..why are you still wearing your tattoos??" I knew he was my boy indeed, when he answered simply, "Because we still believe."

Not the best quality photo, but I had to post the evidence of Coach Brian Kajiyama on the field at the Superdome!!! Thanks to late-night online chats Brian and I have struck up a special friendship. He is my window into Abbie's world as I ask him things like, "What does it feel like to have spasticity" and "Does it make you laugh when people talk to you LOUD and sloooooow, as if you are deaf?" As I told him, I am so grateful to him for being Abbie's megaphone to a world that doesn't hear very well, and on this night in particular, what I could hear him shouting was, "ABLE!!!!"

Da 4 braddahs, all whited-out and ready to cheer. This was pre-game, so we could still genuinely smile. But, as I alluded to above, although Georgia is a very impressive team, and for the most part their fans were very warm and kind...there's no other team I would have rather supported that night, or any night.

New Orleans aiport, 4:30am. This trip showed me that it is great to be ten. Not only can you still curl up on the waiting room seat, but the boys got a lot of other bonuses as well. Tagging along with their buddy, Kekoa Reinebold (he was the very blonde young drummer during the game, if you watched) they spent New Year's Eve first in the players lounge, playing video games and snacking to their hearts content (not to mention seeing the players), and once they were evicted from there for a team meeting, they headed up to the coaches hospitality suite where the Governor was hanging out.

One last memory...as we came down to the lobby to check out at 3:30am most of the activity had died down. We only saw one player, standing by himself in gray sweats, obviously tired but still graciously signing autographs for the small gaggle that he's never been without this season. Colt Brennan showed his class one last, remarkable time. I can't imagine what he endured that evening, both physically and emotionally...yet there he was, still giving back...a true son of Hawaii Nei.