Full Steam Ahead

Today was another big day for our driver-in-training.  At therapy, we seated her in the power chair, headed to the elevator and went downstairs, to a broad, uncluttered hallway.  Then, we said, “Go!”

And boy, did she.

She controlled the forward motion of the chair with a sensor placed directly behind her head.  As she was almost down the entire length of the hallway, I began to wonder if she either didn’t understand how to stop, or couldn’t do it it.

Has she taught me nothing?

Of course she knew how to stop, she just didn’t want to.  Once we assured her that she could stop and start whenever she wanted,  she showed off her stopping skills.  As the minutes of practice added up, she became able to start and stop in rapid succession.


I played a game with her, by standing in front of her a ways away, and letting her drive up to me and stop before she hit me.  Let’s just say that it’s still a work in progress, but I did tell her that it was the best “first day of driving” in our family so far  (no offense, Chase and Kyle).

At one point we all stepped away and let her really feel independent as she drove.  I was in front of her, and an image from several years ago flashed in my mind.  A couple of years after Abbie’s injury, we were in the hall waiting for our therapy session.  A young girl and a therapist emerged from a room, and the therapist placed large, colored plastic dots on the floor.  The girl, an emerging walker, had to practice walking from dot to dot while keeping her balance.  Oh, how deeply I longed for Abbie to progress to doing therapy in the hall, from dot to dot.

I felt again today, that our prayers are often answered in ways we could not have imagined.  Would I rather have Abbie walking?  Of course.  But, I realized what I truly desire for her is independence, and I saw a glimpse of it today — doing therapy in the hall at long last.

As far as her power chair request goes, I was notified last week that the insurance company had contacted a local vendor to see if they could put together a chair like the one we had requested, and they replied that they could.  This is not possible, because there are only four authorized vendors for the seating system Abbie needs, and none of them are in Hawaii.  The seating is critical to making everything else work, so I became anxious when I heard this news.

Then, I thought,  “Wait…back up for just a second.”

If the insurance company is negotiating about what vendor is going to supply the chair, and they haven’t pushed back on any components of the chair…well, it sure looks like the actual request has been favorably reviewed.  Wow!!  I am still holding my breath until I hear something officially, but I am very encouraged.

One other update, regarding the ABR therapy I wrote about recently, and for which we continue to raise money.  The original visit from the ABR team was scheduled for later this week, but at the beginning of February it became obvious that there were too many loose ends and too little time to ensure a successful initiation of ABR in Hawaii.  So, we have postponed it.  But, we are thrilled to be welcoming the inventor of ABR, Leonid Blyum, and the principle investigator (lead researcher), Mark Driscoll to Hawaii, for the Pacific Rim Conference on Disabilities, April 18-19.  We will also be conducting follow-on meetings with stakeholders in the community to see how we can best launch a community template for ABR in Hawaii.

If you are in Hawaii and interested in learning more about ABR, the presentation will be on Monday, April 18, 8:30-12 at the convention center.  There will be special pricing of $85 for family members wanting to attend only  the ABR portion  of PacRim.  Professional registration is $165 for one day.

You can register here:

http://www.regonline.com/Register/Checkin.aspx?EventID=879207

Note:  the family special is not yet available at the PacRim website.  If you are interested in the special pricing, please email me at varasix@aol.com

May God bless you!

Pray for Abbie’s Friends

I have dreaded opening emails and checking Facebook this week because so many of my near-drowning mom friends are describing very challenging, threatening situations with their children’s health.  Some of the kids are sicker than they have ever been since their initial injuries.

Could I ask you to specifically pray for:

***  Caleb:  He had a very long febrile seizure the other night, ended up with collapsed lung(s) (?), and is in the PICU on a ventilator today.  He is very, very sick and the doctors have not been optimistic.  It seems from a recent update that he may be stabilizing a bit today, as far as blood pressure, but he remains extremely fragile. It appears he has a very bad pneumonia.

Caleb and his family are precious to us because they are here — we see them at therapy, around town, and it’s nice just knowing we are not alone on this island.  He has a baby sister who is not quite three weeks old.  I cannot imagine balancing everything that is on Kehau’s plate right now, so please pray intensely for her, too.

***  Luke:  Our little buddy in Tacoma was able to narrowly avoid the PICU this week, but remains hospitalized today, also with respiratory challenges.  His mama, Sue, and I have traveled this road together almost from the beginning, and she has become a very special friend and encourager.  Please pray that Luke continues his suddenly-speedy recovery, and is able to be discharged today.  There is a birthday party  tonight for his older sister, Natalie, and I know they so want to celebrate it as a united family.

***  Aiden:  I got to meet Aiden’s exceptionally creative and crafty mom, Erin, at the near-drowning retreat in November.  He is the eldest of three, so I don’t know how Erin finds the time to out-cake-decorate Martha Stewart and crochet masterpieces, but today finds her running to the pharmacy and caring for a very sick little boy.  Again – respiratory.  Ugh.  Please pray for his quick recovery!

***  Santana:  another little boy suffering from respiratory challenges, with another truly talented and creative mom who focuses on film production.  He is the middle of three boys, and I have missed hearing from Lindsey lately as Santana has been too ill for her to be online much.  I don’t know the details, but I do know that prayer changes things, so please lift him up.

One common theme (and no…it’s not the gender)…what stalks our fragile children is respiratory infection.  Each of our families know too well that what our children usually die from is these infections that get out of control.  The stress, fear, and worry can be overwhelming as things begin to take a wrong turn.  I have felt this weight even just praying for these families, so I am asking you to join me, as they just cannot bear it on their own.

God  bless you!

A Chance to Change the Future (ABR Post #1)

Today I offer you an invitation to help change the path travelled by children with Cerebral Palsy and Brain injuries!

I have spent the last few months intensively researching a therapy approach called Advanced Biomechanical Rehabilitation (ABR).

It is:
 
           *  Family-Centered:  changing the model of bringing children to therapy centers for years on end.  Parents become the experts, and the therapy is provided in the home.

          *  Gentle/Non-Invasive:  There is no danger of hurting a child doing ABR.  It is not unpleasant or painful for them.

          *  Body-focused:  It does not aim to heal, rewire or reprogram the brain.  It’s goal is to improve the structural and functional elements of the body.

          *  Effective:  I have never  found a physical rehabilitation approach that resulted in gains for children with CP and brain injuries.  Perhaps they slow the ongoing decline in the body, but functional gains are rare, particularly in the most affected children.  The following video stunned me:

While the changes are notable, a little background will make clear how unusual these changes are.

I found that an NIH-funded study was conducted in the province of Ontario which included every child diagnosed with Cerebral Palsy born in 1992.  Some families did everything possible to help improve the physical condition and capabilities of their children, while others did not have the means to do so.

 The study found that it did not make a difference…no matter what was done, or not done, the children’s path followed an almost predestined curve.  The most affected children reached their peak of motor capability at age three, and actually began to decline as they reached 10.  Even the least affected children reached their peak before 10.

As a mother I have sensed this curve. I have fought against it, and tried in every way possible not to look it in the face.  But, it is real, and, as we have found in these years of effort with Abbie, it is accurate.

And, it is not only the lack of improvement in movement capabilities, but even more pressing are the health issues  and invasive interventions that accompany that unbudging curve.  When liquid medications fail, we move to injections.  When these don’t work, it’s time for snipping tendons and muscles.  When these methods don’t stop the contortions, families consent to hip surgeries, spinal rod surgeries and the complications these bring, often while not halting the downward spiral.

We don’t make these choices because they result in great outcomes, or “fix” our precious children.  We just haven’t had any options other than “bad” and “really bad”.

Well, my time spent looking into the mouth of the dragon eventually lead me to a third option, “responsible dreaming.”  It is not a silver-bullet or overnight magic, but ABR offers the family willing to work for it, the chance to bend the curve in their child’s life.

If you watched that video, realize that the boy shown falls into the “most affected” category (GMFCS V), so his body should be fairly resistant to attempts at helping it improve.

Weeks of intense research convinced me that ABR will be the best approach to accomplish physical recovery in Abbie.  But, over the years we have been blessed to meet families of other special children, and I knew it could really help them as well.
So, instead of flying Abbie to the ABR Clinic in Montreal for the initial evaluation and training, I am putting together a pilot group of families, and the Montreal team is coming here the first week of March.  During that visit, they will also provide training to professionals so that eventually, if the results come as we believe they will, ABR  in Hawaii can grow to the point of being available for every child who needs it.
So, what is it??
It is a hands-on, gentle, non-invasive therapy provided in the home by family and caregivers.  The primary target is the myofascia, and the goals include increasing the volume and strength of the chest and abdominal cavities.  It is a completely new way of looking at the bodies of children with Cerebral Palsy and brain injuries…and it’s about time!
Outcomes for these children have not changed much in the last 100 years.  Splints are now made of fiberglass, neoprene and velcro instead of wood and leather.  We can seat kids in shiny pink or bright red wheelchairs, and surgeries can keep their bodies looking more normal.  But, they are not regaining function, they are not becoming more physically independent.
That has got to change.  While we await the fruit of  brain research ongoing in many sectors,  we must help our children’s bodies to heal and strengthen.  That is the mission of ABR — not fixing brains, but fixing bodies.
For more information about ABR  you can go to www.blyum.com, and www.blyum.typepad.com
I hope this is not information overload, but I wanted to give you a glimpse of the new terrain that has us so encouraged.  And, I need to ask for your help in making it happen.
The opportunity to have the ABR team come arose suddenly, and we’ve been working feverishly to put it all together.  We have many of the pieces in place, but the big hurdle now is finances.  The initial evaluation and 5 day family training cost $1900 per child.  We must also raise approximately $3000 to cover the travel and lodging expenses of the team.  In other words, we need to raise about $15,000 in one month.
I know that if you are reading this blog, you care about Abbie.  Ray and I had planned on doing ABR from the beginning of this process, and will fund her portion.  However, we have some incredible, dedicated families who didn’t even know what ABR is until December, and certainly hadn’t budgeted for it.  Would you help us start this pilot group?
If 100 of you out there could find $150 to donate, we would be ready to go!
You can donate at the Chip-in widget to the right of the posting.  I will deposit all the money into a newly created fund:  The Rehab Family Training Fund of the Kapiolani Health Foundation.  This will not be a deductible expense if you do it this way.
If you would like to donate directly to a 501(c)3 for tax purposes, you can send a  check to:
Kapiolani Health Foundation
Harbour Court
55 Merchant Street
Honolulu, Hawaii  96813
Please put “Rehab Family Training Fund” in the memo section to ensure the money is routed properly.
I post this update with prayers of thanksgiving for your support all these years, and with hope for the future of many children whose lives will be improved because of ABR.