Wednesday, September 26, 2012

Less Sitting

Yesterday, I had a hard day learning more about the origins of Esra's bottom blister and her future mobility.

Even when the skin completely heals, we really have to be cautious with that new skin.  It's integrity is different, weaker even than the original skin.  I was even told that because people die from skin breakdowns like the one Esra has, that we have to be take extra measures with prevention.

It will take me a few days to digest that news.

But I am trusting of the source of the news.  A company rep for ROHO, products for pressure sore seating, came to the house to evaluate Esra.  She observed her seated, as well as in her mobile stander.  She could see right away that the blister came from sheering as Esra is continually repositioning herself while sitting.  

Those little tiny back and forth movements are sheering the layers of skin together.

This rep is a veteran occupational therapist who has associates all over the western world.  She also travels internationally looking for the best devices and tools for disabled people.  She knew so much!  But her perspective was overwhelming because she validated how hard raising Esra really is.  And all the things or absence of things that are contributing to her skin breakdown.  She highlighted the need for transfer boards, padded seat for the toilet system, and restricting Esra's scooching on the floor  She did compliment me on my amazing kid-centric home.  I guess that is some consolation for all the things that we don't have.

I did ask her about sheepskin.  She did not bring up sheepskin until I asked about it, probably because most people do not have the funds to buy it out of pocket and it is not part of our culture, as it is in Australia and New Zealand.  But we actually use it quite a bit.  Esra sleeps on sheepskin, sits on it in the Snappie and also her carseat is covered with sheepskin as well. Yesterday, I realized that I was not utilizing it enough.  The one thing that is not covered is her manual wheelchair!  And that is where she has been spending most of her time.   She also needs her booster seat at the table lined as well.

I feel sad that there are so many loose ends in the care plan for Esra.  It is hard, hard work and so many things get overlooked, forgotten or put by the wayside because we don't have the time or energy to do it.   I desire to do more for least for now she will be doing more standing and less sitting!

Saturday, September 1, 2012

Happy Everyday

Esra was admitted to hospital late Thursday night for a skin infection.  She is having exploratory surgery today because the antibiotics are not working.  Despite the discomfort, she is happy and friendly as usual.

It seems like every encounter she has with the Phoenix Childrens Staff, they say "Is she always this happy?"  And I respond, "Always!" 

She has to be in serious distress to change her mood to partially cloudy or stormy.   For example, she was a bit uncertain about riding a horse during our Hope Kids-sponsored weekend at Whispering Hope Ranch a few weeks ago.  She kept saying "stay with mommy."  I put her in the saddle despite her hesitance.  She still was unsure as she put her arms up for me to take her back into my arms.

But then our friend and Executive Director of HopeKids, Bridget, came up with her camera and coaxed Esra to smile.  She immediately beamed with her big smile for Bridget (she has those HopeKids trained!) and the lead on the reins started the horse forward.  Esra was brave the entire time as Bridget walked by her side.  After a few laps through the arena, she returned to me with a smile.

We can all do difficult things.  Esra is a fabulous teacher of how to find happiness each day despite the difficulties.  And to show it.