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

Here It Comes Again

My need to document proves that "crazy woman" is still here.  Cannot imagine that this subject will be found covered in many places as the subject today is rather distasteful.  Oh right, I remember now, my entire subject is rather distasteful.  I will make this rather brief, because mostly I am simply tired today.

After Riley had a good morning, he was disinterested in his lunch.  If you know Riley, you know he has a tremendous appetite.  It wasn't long before he began vomiting.  Vomiting is stressful for all children, however having a typically developing child and a special needs child I can tell you with certainty that it is entirely a different experience with special needs.  There is no warning.  It is projectile.  It is frequent.  It will be everywhere - everywhere! on the walls, down your bra and panties, in his hair, soaked in the carpet, on the opposite side of the house... you may be getting the picture but I'm not so sure.  After  cleaning up as fast as possible, stripping everything, starting the laundry machine as it will be going continually, attempting to cover everything in towels, washing him and getting the child upright in an attempt to quiet the next episode it will begin again.  And again and again throughout the day.  By the way, this really requires two adults be present to make it happen at all.  Fortunately, John was home and he moves fast.

There was an indication the evening before.  Leg tremors.  After these episodes the leg tremors really take over.  In my arms, I support him upright on one side and with the other attempt to pull the balls and toes of both feet toward his shins.  Barely four inches remain between shins and toes once the tremors are relieved.  Then we wonder if this effort to relax the tremors puts added stress on the abdomen.  Release the legs.  These tremors increase to.... my guess, about 40 beats per second - only because I cannot imagine it being higher than that.  His feet move like a film in high speed when the film has spun free from the reel.

Move into "tonic posturing" and eventually a seizure.  I think I will reserve those for another day.

The most amazing part of all this is Riley's sweetness!  By the end of the evening he has lost all of his night medications which means sleep will be impossible for all of us.  Medications and sleep drugs will most definitely be a frequent subject.  The moments in between the vomiting and severe tremors... would you believe he smiled at me and talked in his sweetest manner. 

He was positioned all night so that I could maintain a hold to relieve the tremors.

It is so difficult to see my child experience this.  I suspect it is even harder for John when I catch his expression.  These episodes are also one of our hot button issues because of the history - naturally there will be more on this later.

Does anyone else out there experience a similar situation?  It's still a challenge to get through.  To anyone who actually bore through this post... thanks for listening!

The picture below is one of the Ronan's family portraits that teachers insist upon.  Do they know the heartache this little exercise brings?

Also today please note this piece of news which will bring more difficulty to our lives... Florida Governor cuts disabled programs.

By Stacie Wiesenbaugh