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 her...at least for now she will be doing more standing and less sitting!