Riley Met A Goal!

"Riley met a goal!" Miss Emily announced when we arrived for Physical Therapy at All Children's Monday afternoon.  Now this is a statement that I am rather unfamiliar with hearing. 

Every movement Riley makes takes incredible effort.  In the past year, John and I have marveled at his new skill: Riley at the age of eight learned to lift his left arm up to his face and with the back of his wrist rub his own eyes.  Now, depending on your experiences this is either the one of the saddest skills you have ever heard or you are at this moment incredibly jealous that my child can now rub his own eyes when they itch.  What is life like if you cannot do this for yourself.

If you can relate to this being an amazing milestone, you understand the difficulty of meeting therapy goals in order to qualify to keep therapy.  Our goal will not keep us in therapy.  But our goal does show that Riley is working and working hard to improve his abilities.

Are you ready?  Here it is.  While maintaining a weight bearing position on his elbows, Riley held is head up without help for 10 seconds.  10 Seconds!  It's a beautiful moment to see my child improve and become stronger.

Next, we get to maintain this ability.  So much work to do.

To do all he does, Riley is Superman.

We are all special... by Stacie Wiesenbaugh

Today's Inspirational Post is at kidz - I Know Different.  Please check it out.

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Connection

The world around us is always new and fascinating to young children.  Each new sight and sound is incredibly exciting.  Each child in their own way joins the world and connects readily with their environment.   I see my youngest create relationships everywhere he goes.  Hugs and smiles are shared freely with neighbors, playmates and teachers.  He takes in his world and chats about every encounter and event.  This connection beyond mom and dad is a daily occurrence since the moment of his birth. As parents this miracle nearly goes unnoticed.

Below: Riley in Corkscrew Swamp, 2006.

Well... most children form these connections constantly from the moment of birth.  This is not Riley's experience.  The brain damage he suffered prior to birth makes it so challenging for him to process the environment around him.   His dad and I try to help... we hold him steady hoping he can view a bright musical toy set before him... we help him reach to touch a patient dog before him... we give him kisses and talk to him incessantly trying to help him be a part of our world.  We never give up and never will.  But sometimes it gets frustrating that he remains trapped in his body.

And then... it happens.  Riley makes a connection!  Everything is clicking.  He is organized and can pull together his emotions and his body all at the same time to show that he is really right here with us... not above the clouds.

Riley is eight and a half years old... and when I see him connect the tears are back in my eyes for pure joy.  Yesterday in Miss Emily's arms for his Physical Therapy it happened.  Seated facing forward in front of her, he turned back and looked up into her face then leaned in and brushed her cheek.  Was it an accident?  He did it again... with all the purpose he could muster, leaned in and gazed up at her.  Riley connected. 

Not once but twice yesterday.  Later in the day we waited ringside for riding lessons.  Conversations went on just behind us as Miss Christine arrived with Kaetlyn.  Reaching backwards and upside down from my lap, Riley appeared to search behind him.  I righted him thinking he had just fallen too far, but he pushed against me searching.  He was searching for the people behind us.  Another connection made.

At eight and a half years, miracles still happen.

We are all special.... by Stacie Wiesenbaugh

Tender Foot

Physical Therapy has returned!  

Most children with multiple disabilities see their therapies come and go over the years.  There is a variety of reasons why this happens.  To mention a few that I understand: insurance/Medicaid budgets and changes, caregivers should learn therapy throughout the course of sessions and learn to continue the therapy independently, and a very large demand on the therapy resources.  The reason that usually ends the course of therapy for Riley: he cannot demonstrate measurable improvement on an ongoing basis.

As a mother and caregiver it does help to return for a refresher course of my own.  Yesterday, the lovely Miss Emily reminded me to pay more attention to Riley's feet.  Oh, those poor little tense feet.  In actuality, it is quite easy to give attention to Riley's feet.  He sits in my lap and they are an easy reach.  are also amazing.  Since Riley does not use his feet, they are amazingly soft.  Unfortunately, they are also very tense... his toes are always curling... a little more all the time especially after tonic posturning.  They do not receive the input and pressure from general use and it shows in the narrowness and lack of callous.  He can barely where shoes because in no time the pressure points will begin to break down.  Generally I simply move them around and stretch out his toes.  Yes, reminders are always a good idea.

There are quite a few demonstrations online.  It really does not seem to need anything so complicated as I am finding.  Any few moments available will do.  As I remember it.... being no expert, just a caregiver needing to apply useful information.  Begin at the bottom of the heel with your thumb.  Apply a little pressure moving upward along each tendon.  Continue on to lengthen the toes and gently stretch each toe back without reaching the point of overstretching.  Next put your thumb under one of the long bones in the foot and the index finger above the same bone and gently wiggle it up and down.  One at a time repeat this with each of the long bones.   Another helpful move is to move the whole foot back and forth from the ankle only as far as remains comfortable.  Over time, more motility will be gained here.  Foot rotations and gentle toe pressure is also welcome.

More suggestions welcome!  Stacie Wiesenbaugh