Tomorrow

No rest for the weary of the wicked- I may be both! We head to our first doctor's appointment tomorrow.  I was able to triple stack this time: pre-scheduled every three month Botox, Deep Brain Stimulator check up, and Baclofen trial. 

 

Our appointment is for June 2. 

Libby has had more pain and been whiney and miserable in the past month or more.  Her nerve endings are pretty messed up so she may complain that her ankle hurts when it's really her knee.  Keeping her on pain meds isn't successful as she becomes very moody, growly, and well not nice.  We've tried several different kinds of pain killers and they cloud her brain in a way that isn't okay.  The Libby we all know leaves the building.   I don't want her in pain or uncomfortable, and I want her eyes to sparkle with her Liberty-ness.  (Yea, I know none of this is about what I want.)

Botox helps, but there isn't enough alotted every three months to relax her upper body and her lower body.  The Deep Brain stimulators do help as I've seen how completely rigid and locked she could be. Can't unsee what that was like. 

We are doing a Baclofen trial to see if she can handle the muscle relaxer, Baclofen, being pumped into her spinal fluid.   We tried several years ago and I freaked afterward because Libby couldn't walk or move her legs.  That was when she was still walking.   We don't walk anymore. 

This appointment is the first step to getting a Baclofen pump inserted into her abdomen and a catheter carrying the muscle relaxer to her spine.  This would allow her lower body to be pharmaceutically relaxed without having the high doses of the drug running through her blood stream and fogging her brain.  With the Bac Pump we will be able to use all of the Botox in her upper body and that will be better all the way around.   I also have some hope that the Pump might help with the ever increasing potty issues.  

 

 

http://www.medicinenet.com/script/main/mobileart.asp?articlekey=42865

So, off we go.  We haven't gotten final approval of her new wheel chair or the lift for the van yet. Hoping that'll happen this summer as well.  But, we all know, my hopes don't matter I the grand scheme.  They are just that; the silly hopes of one mom. 

Fill the Bucket

https://www.facebook.com/jennings3/videos/10204690090199860/

*I hope the video link works. It is worth reliving.

For me, it's not about the bucket list, it's about filling the bucket. 

Just over a year ago Liberty walked across the stage and got her high school diploma.   For a child that started out healthy, outgoing, vivacious, unpredictable, smart, independent, stubborn, and loving, her graduation was a given.  For the child who lost full neurological function due to the Lyme disease that went undiagnosed, her graduation was a miracle.  

Chronic encephalitis, dystonia,  Parkinson's, spasticity, detrusor-external sphincter dysnergia and speech apraxia are her current diagnoses. She has rechargeable Deep Brain Stimulator's, meds on a five time a day schedule, braces, lots of equipment, and we are hoping to get a Baclofen pump by the end of the summer.  Since her diagnosis January, 2010, her body and prognosis has changed.  Her main doc, Dr. Hottie, doesn't discuss any prognosis as Liberty has been in uncharted waters for a long time, plus it's too hard to discuss.

 I have been afraid of anything happening that I could have stopped.  Afraid of Libby getting hurt.  Afraid of doing anything extra that could hurt my body and keep me from taking care of Libby.  I have been careful of our adventures. We've had lots of fun and lots of adventures, yet I've been beyond cautious.   

I've bought Libby lots of stuff that I thought would make her happy.   Buying stuff was not something I did  before she was struck with illness. Many beloved others have bought her stuff.   We've pushed to move towards experiences, but not full force. Something changed in me early this Spring. 

I'm done with stuff.   I want to go and do.   I want to fill Liberty's bucket with stuff we've done. Fill it with adventures that left our hearts racing and our tears flowing. I don't know what time we have left and what any tomorrow holds,  so I am going to push that we go and do. While we can, we will. 

 

While I can; I will.  While we can; we will. For the child who is smart, funny, flirty, adventurous, and has a list of medical issues, everyday is an empty bucket and I say lets go!  I have to continue to let go  and get going.   I have to trust and relish the adventure.  I have to- to remember her.

Raft or Cement Block

Here at the end of the school year the look of fatigue is everywhere. It  feels like we're dragging ourselves across the finish line; carrying our wounded and schlepping bags of  old lunch containers, school shoes,  and books-lots of books. We teachers and staff finish with dogged determination, exhilaration and a lingering sense of what wasn't done, or what wasn't done well.   Because of the structure of  our school system, teachers are given some time to reflect and we call it Summer.  

For myself I have been batting an idea around about what things keep me afloat.   Here are some of the questions I'm asking myself. 

What things buoy me- a raft separating and salvaging me from dangerous depths? 

What things drag me down- a cement block tied to me in deep water?   

What words, actions, relationships, hopes, reactions, practices lift me in a way that allows me to be the best me I can?  

What words, actions, relationships, hopes, reactions, practices pull me down and prevent me from being the person I can be?  

Am I surrounding myself with rafts? Or anchors?  

Am I a raft or a cement block  to others? 

Which are you- to others? 

I cannot spend my reflective time comparing myself to others.  I have to reflect on what I have done, am doing, and will do.    I also will rejoice in the victories and forgive myself and learn from the defeats.  

Be blessed.   Much more coming.