Wednesday, June 27, 2018

Continuity

Happy Summer!
I bring you summer greetings and gratitude for beautiful long days.  Before I get into all of the updates for Liberty and her medical needs I want to share the saga of these plants.  

It shouldn’t be any surprise that I like to grow stuff.  Every year I plant a lot of seeds and seedlings.    I plant many in hopes that some will grow.   This year I put some seeds in our old stock tank hoping they would pair well with my moon flowers.   Well, grow they have.  

One day in late May I noticed that the largest and most promising plant had a bend/crease in the stalk and was resting on the sister plants around it.  

For the last several weeks I have waited for the bent stalk to continue to weaken and wilt away.   The other sister plants around it would be withering as well from the strain.   The opposite has happened.  


All of the plants have grown tall and strong regardless of the weakened nature of the first flower.  The sister plants are boisterous in their following of the sun every day.   The first flower is about to burst with a flowering to offer us all. 

We are all like these flowers in varying stages of our lives.  Sometimes we are bent and have to rely on our friends and families.   Sometimes we are part of the support group.  Whichever part of the growth process we are currently on-we are all growing. 

Liberty had her regular does of Botox at the end of May.  We do not see the great results any more. The worst news from this appointment was that Libby had dropped a little more weight.  Her swallowing issues continue as the dystonia does its hateful work. 

 Two weeks ago we met an adult neurologist who is in Amarillo.  He is going to read her medical records and catch up to where we are in her care.  His practice does handle the baclofen pumps, but not the DBS, so he will look into where we will need to go.  He will not be replacing our beloved Dr. Hottie, but will be adding to our list of medical supporters.   In an important side note, the new doc loves Star Wars and was wearing a bow tie.  I hope he will be willing to take Libby on.     

We have a baclofen pump refil in July.   I cannot think of this  appointment as even a possibility to be our last visit to Cook Children’s.  I believe that the doctors and staff there saved Libby so many years ago, and have continued to save us along the way.    

There will be an appointment with a new adult disability agency in July.    I’m not even sure what all this group offers; I just know that I was told to see if Liberty is eligible.  

My gratitude grows as our strength grows. As we continue learning this new landscape that is the world of adult disability.  There are some real challenges in Liberty’s life that are beyond my control, and that’s okay.    I have no doubt that we will all continue to grow and support each other.    

Thank you my beloved friends.  
   Love and light,  ileana