Here we are a skip away from Ehlers Danlos Awareness month and it has been a month of heart ache. Bean's hips and shoulders have gotten worse in the past 4 months. Her walking is greatly reduced. She has switched to a wheelchair to get around the school, but she cannot attend the majority of the time due to so many painful and frequent dislocations. She is losing strength and motivation, which is a bad combination. We started seeing a Therapist to help talk through these difficult feelings. I say "we" a lot, when really it is all her. I am a part of her process, but I don't know the pain she struggles with. I am just here to support and learn, help and love.
I have learned that I cannot lift a teenager who is unable to get up after all limbs have dislocated at once. We are working on talking through strategy to get limbs back in place, one at a time, using core strength and so far, she is doing a good job of this. She no longer uses the stairs and stays on the first floor of the house. She will do stairs once in a while, but it is very difficult and scary for her, so she opts not to use them unless it is really necessary.
If you have read the past posts, you can see we are going in the wrong direction, but that doesn't mean we have given up on hope for the right direction to make itself known. Currently, our EDS medical team is working to find an intensive physical therapy rehab group that can work with this unique situation. They recommend she do homebound school for the remainder of the year and focus on this rehab as priority one. We are all on board with this, as what we are doing doesn't seem to be helping.
I'll be back with posts for awareness and hope throughout May, and I hope to read your stories and comments, too. I've been following Meg's journey and she continues to break my heart and inspire me all at the same time.