Monday, September 27, 2010

Open Doors and Independence

 (note:  I did not begin this update with thoughts of writing a tome, but just went where the Spirit led.  I pray you will be blessed.)

"When it rains, it pours" is such a cliche, but only because it's the truth.  Things can never seem to happen in manageable isolation, but insist on arriving in chaotic twins or utterly crazy triplets.  Usually, it is a cause for aggravation or even despair.

Not at our house.  At least, not lately!

 Perhaps Abbie's prayers for Dobi (see last update) added rivulets to her own growing stream of recovery. Maybe the paths of her faith and God's will are at an important intersection.  It could just be the turning of a small facet of the divine plan that we will never comprehend.  Whatever the underpinnings, all that matters is that "it" is GOOD!

 A couple of weeks ago we met with her orthopedic surgeon and therapy team.  Together we assessed her current state - below the waist she is awesome and we are all pleased with her knee-bending, foot position, and hip flexion.  Her arms and hands did not get the same gold star.  Dr. B said that he thought the hand surgery he performed in April would be a "permanent solution" to her wanting to hold her thumb on her palm and keep her hand fisted.  Her hands are so much better than they were, but her thumbs really (really, really) want to go back to their cozy palm-caves and we are continually fighting against that with splinting, massage and exercises.  Her arms also want to roll back out again, making it tough to stay in a neutral arm position, and almost impossible to get to full pronation (palm down).  Not great for communication.  We talked about future arm fusions and other not great things.  We looked at her spine and talked about monitoring the developing curve, which may become much more pronounced through adolescence.  We discussed how many adolescents require rods in their backs to prevent curvatures that compromise their abilities to breathe or be seated in wheelchairs.

Finally, at one point I looked at Dr. B. and said, "What you are telling me in not so many words is that this is all going to get a lot more difficult."

"Yes - as she grows those tight muscles are going to get bigger and stronger.  Everything is more difficult then."

I was grateful for his challenging, yet empathetic honesty.  I could deal with it because in the back of my mind I was thinking, "We're just not going to let it get to that point."

I've thought that before, and been wrong -- about things as simple as a G-tube and as complex as her hip surgery.

This time is different, however, because we have a new tool in our box that seems to be making a huge difference already.  First, let me tell you what we've seen, and then I 'll tell you what it is.

One result of Abbie's brain injury is that she is slack-jawed and her mouth hangs open nearly all the time.  Over the years this has changed the architecture of her mouth and jaw.  In August I had a dentist I really respect examine Abbie.  Since we have no images of her mouth, he said that just by manual examination he could not tell if her TMJ joint was fused, or had even formed properly.  He was not sure how much range of motion we were ever going to be able to get with her lower jaw, but was not overly discouraging because the truth was there was no clear way to tell.

The next day Abbie received her first treatment with this new tool.  Within twenty minutes her jaw was swinging like a gate on shiny new hinges.  I was stunned.  The only barrier to full mouth closure was her first molars.

During this session, her nurse Alicia and I both watched in amazement as Abbie's face changed right before our eyes.  Constricted for all these years, her palate is very narrowed, and thus her mid-face is as well.  We saw it broaden, with her cheekbones becoming more prominent and her eye sockets becoming distinguished from her face.  It was stunning.

Having seen the visual evidence of the power of this new tool, I ordered one and (im)patiently waited.

Hmmmm....I just realized that to really tell the  rest of this story I need to tell you what the tool is now.

The "BioTransducer" is an attachment to the Tennant Biomodulator, a device we have used for years.  While the Biomodulator works through the electrical wiring systems of the body (the sheath around every nerve, and the fascia), the BioTransducer works with the magnetic fields created within the body whenever electrons move.

This difference has opened up incredible new doorways for us.  I believe the Biomodulator is a critical reason why Abbie has recovered her cognition.  But, we've never had a way to treat her brain directly.  Until now.

As I passed the BioTransducer over her head I would feel magnetic tugs at areas that needed treatment. I just treated where it "stuck".  I think I spent an hour or so doing that, and then Abbie fell deeply asleep for the night.  Over the next three days I noticed two things about Abbie as I continued to treat her brain and other parts of her body.

She was sleeping a TON.  One morning she slept from 9:30 until 1:30.  A couple of days later she slept from 9:30 until 12:30.   She was breathing wonderfully, had a normal temperature, and her coloring was beautiful.  So, I just let her rest and assumed she was doing some heavy duty "inside" work.

When she was awake she seemed to be unloading a lot of emotional trauma.  At random times she would become very upset:  crying, screaming out, shaking.  One night I slept on the recliner right by her bed so that I could be there immediately to comfort her.  Again, this seemed to be part of a process she was working through, so we just stayed calm and tried to reassure her that she was safe and we were right there.

This went on for three days.

At the beginning of this sleep/scared stage we went to PT.  Abbie has outgrown the foot splints that we use when she stands, so she has not been standing in a while.  Dr. B. asked why we weren't letting her stand barefooted.   Uhhhhh - no good reason, so up she went on Monday. 

Because she hadn't stood in so long, her lower legs began to get a little blue after 5 minutes, as her circulatory system isn't used to  pumping uphill.  I was using the BioTransducer on her left leg because the IT band is a bit constricted, which gives her valgus in the left knee (her knee bends inward).  As I treated that area, her lower left leg turned pink again.  Her PT pointed this out to me, so we thought we'd experiment on the other leg.  After a bit of BioTransducer treatment it pinked up again, too.  So, I kept treating, and Abbie kept standing.  She was able to do twenty minutes since we were able to keep her legs pink.

By Wednesday evening it seemed that most of the emotional issues had been worked through, for now.  Thursday brought two therapy appointments back-to-back.  Of course, I packed our new toy along.

First we went to Vital Stim, the therapy to strengthen Abbie's swallow.  She had cried throughout the previous week's session, as she detests the electrodes stuck to her throat.  This week I focused on treating her TMJ joint as the therapist worked on her swallowing.  I only had a sideways view of the action, but did catch a glimpse of what caused the therapist to exclaim, "Oh my God!!"

Abbie had raised her lower jaw up to meet her upper jaw during a swallow.  That sounds so pedestrian, but we have been working on, and praying for that for six years.  And, then she did it again.  And again.  Coordinating her jaw movements with her swallow is like learning a new dance for her, so she soon fatigued and it got harder for her.  But, we all saw it and rejoiced.  Not only is her jaw unlocked, but she is learning how to USE it again.

We floated out to the hallway on a wave of celebration, and drifted into the OT treatment room.

I explained to Abbie's OT that given Dr. B's assessement of Abbie's hands we had changed the kind of switch she uses to communicate since the old one encouraged the type of movement we were trying to avoid.  The BioTransducer treatments had reduced Abbie's muscle tone enough that she was able to easily keep her right hand and arm in a neutral position and use a joystick switch.  She had showed this to the school therapist the previous Friday, and was now happy to show Auntie Eydie.

She did so well with the switch that Eydie said, "Let's get her into the power chair, since the controller is also a joystick."  Abbie was all for that idea!

We padded the controller a bit to make it big enough for her to get a good grip on it, and then....

There she went, all by herself.   Eydie, Alicia and I just stood back, and for the first time in over six years I watched Abbie go somewhere all by herself.  There are not words to describe the sensation of that sight, or the emotions I felt.

Of course, she did it in true Abbie-style.  Backwards - because that is more fun.  When we would warn her that she was about to bump into something, she would just speed up until she crashed into the desk, or wall, or garbage can.  Still a rascal!!

Of course, we continue daily BioTransducer treatments, and at times it feels like a dream.  Every parent in our situation prays, hopes, begs and wishes for something that will truly help, something that really will change things.  I can't believe that it's now in our hands.

I do not know where Abbie's road will go from here, and when the curves and hills will come.  All I know is that we are truly abundantly blessed. 

Tonight she and I read Psalms 56 and 116, which seemed penned just for her.  I know, I know, I know that she truly will "praise" and "tell" and "proclaim" before the Lord's people one day.  And, she may just ascend the stage backwards....just for fun!

*** One other little note, amidst all this praise.  Please pray for our niece Crystal, who lived with us when Abbie was hurt and helped us so much in caring for Abbie afterwards.  She and her husband, Dustin, are at the hospital right now as she labors with their first child.  We hope and pray that little Katelyn will arrive safely - after midnight - so that she can celebrate her Birth Day along with Kyle, who will be 18 tomorrow. ***

Wednesday, September 15, 2010

Powerful Princess

Abbie has been busy getting used to new therapists from school, who come to work with her at home.  She has also kept up all her physical work.  It is difficult, after a lapse in updates, to catch up.  So, the best (I admit...I mean "easiest") thing to do is to just jump right in at where we are.

Last Sunday began a saga that made me realize how blessed we are.  Just before Genevieve left, she asked, "What is that fever you get from mosquitoes?"  Malaria was the first thing that came to my mind, and was my answer.  In the middle of the night the word "Dengue" came to me.  Yes, indeed, it was Dengue fever that her two little great-nieces were afflicted with in the Phillippines.

Monday brought dire news, that the older sister (6yo) was failing, and becoming unresponsive.  It was especially stressful for Genevieve and her family because in the Phillippines, medical treatment is not undertaken unless it is paid for right then.  They were having to come up with money, during the crisis, to get the care these precious girls needed.

The family was being heavily pressured to disconnect life support, as Dobi's organs failed and she no longer responded to anyone. Treatment was begun too far into the course of the illness to help her. The family's only recourse was to beg for the hospital to leave it on long enough for the mother to get there to hold her daughter as she passed away.  Sickening memories for us, of that situation, but all I had to worry about then was Abbie - -not how we were going to pay the ICU costs that day.

As the news kept getting worse I turned to Abbie and said firmly, "You need to start praying for Dobi...right now.  Pray for Jesus to heal her.  You keep praying."  Abbie's little body jumped in her bed and her eyes flashed her affirmation.  I turned to Genevieve and said, "Abbie is on the job!"

A couple hours later, Genevieve's phone rang.  Dobi had urinated a tiny bit.  We laughed with joy - -it wasn't over yet!  But, the family still had to fight to be allowed to support her.  The disconnection was scheduled for Tuesday.

Mid-afternoon on Tuesday, while I was in the kitchen I heard Genevieve cry, "Oh my God!"  I hesitated just a moment before I ran in there, intimidated by the grief about to confront me.  When I saw her face, however, I became dizzy.  Not tears., joy , joy.

Dobi was awake!  And talking.  And asking for a Dora cake for her birthday.  I danced over to Abbie and said, "Look how powerful your prayers are.  LOOK what you CAN do!!"  She grinned.  I reminded her that the job wasn't quite done, and that we needed to pray Dobi all the way home, but we did relish the celebration.

We are humbled yet again.  How loving and compassionate is our God.  How he houses his most powerful warriors in fragile clay.  How profoundly he uses those the world sees as unuseful. 

Abbie was most certainly not the only one praying for Dobi.  But, He allowed Abbie the privilege of being part of someone else's miracle, to feel capable and strong, and, I suspect, to feel particularly equipped and called for just such a mission.

We are so grateful!