Family

       When Libby’s body started quitting on us and her brain decided to show its damage in 2009, it was both a struggle and a gift to get to school everyday.  Between new physical, emotional, and intellectual challenges and the rough rodeo that is medical insurance I was a mess.  A lost mess.  

      My school family  were amazing.  They sent us to each new children’s doctor, new hospital with love, hope and extra money for food. I had to learn to lean on other people.        

       I’ve always relied on my God, my Grandma and myself.   Going through the devolving of Liberty’s health taught me that I would have to rely on others.  And I didn’t want to.  I didn’t have the heart space to be open to any new people.   Then the bubbly, curly headed, bossy little lady came into the teacher’s lounge: enter April Wolterstorff.  Now those who know me, know I’m not a fan of very loud and bossy women.  I like calm and this beautifully boisterous woman wrecked my quiet in many ways. Keep being your bold and fierce self! 

       She told me she was going to be my friend.   What did the little weirdo know about me and my life.  And friend me she did.  She told me about her son, Kyle and how she’s leaned to be his Momma.  

       April gave me lists of people to call and organizations to become a part of.  How to reach the Special Needs departments of health insurance. How to ask for the right person to get the right appointment in the confusing world of children’s medicine. 

        April also tried to help me voice my emotions.  I had become stoic as a shield.  Six months into Libby collapsing on the way home  from school and I had not cried.  Doctor had asked me if we wanted to focus on quantity or quality of life Libby, she was 12, and I hadn’t shed a tear.  Nine months in and I hadn’t been able to  release  the valve. April told me it was okay.  I could feel what was happening to Liberty  and my family and not fall completely apart. She taught me so much. 

         I ended up bringing Liberty to Caprock with me for her high school years.  April was in charge of the ACC department and she continued to amaze me with her knowledge and patience in training me. Libby started her freshman year walking the halls and finished in her wheel chair.  (She did kind of zombie walk at her graduation with immense help.) April adapted and adjusted with Liberty as her disease progressed taking more and more from her body. She allowed me to be the teacher and not be the broken momma.

         April also calls me on my shit. If I’m hiding my emotions she will often shoot down my shield until I tell her the truth.  Everyone needs a gentle truth detector in their life.  I’ve loved her healthy and as her body had rebelled against her.   When she had to leave teaching I was devastated, but I knew that her body needed what it needed.   And I love her still.  

         She has been my “go to” for all things since that day in the teacher’s lounge. Now she’s moving away to embrace wonderful opportunities for her family. 

 I don’t have a place to put these emotions.  

  I will forever be grateful for her love and support.  You keep on with your glittery self.   Shine on my beautiful friend.  My sister. My claimed family.  

 And thank you. Thank you.   Thank you my Texas unicorn.  

Mariah and I made the trek this week to Cook Children’s to get Liberty’s Baclofen pump refilled.   Because of the upcoming surgery Rachael will need, I jumped at the chance to spend some time with Mariah.  We have never had any mother and daughters trips, so off we went.  There and back again within 36 hours. Grateful for any time I get with Mariah. She has truly grown into the woman I dreamed she would be.  

Thank you Mariah for being my chaperone.    

Actually let Mariah drive and then I crashed.  

Mariah always be your fearless and bold self!    


Take the time you get with your loved ones and your chosen family and embrace them for the bodacious people they are.  

“Big Life” by hONEy hoUSe.  
https://share.icloud.com/photos/06zLBVFCtssUL9G8aWwA9EJQg

Today is November 7 and our nation is beginning a transition.  Please focus on the beauty in your life and do joy spew negativity on other people.  Be kind. Be uplifting.  Be the light we are CALLED to be. 

  

Yes there are places for anger, but spewing anger at others isn’t going to help us ALL heal and grow forward.    Both sides have fear and claim injustice.  Stop yelling and listen with an open heart.  Hear before hurting.   Be gentle with one another as we all learn to navigate this new era. 

Visits

Sparkles was being attacked by the giant

Lego Loch Ness! 

Fun outside if Cook Children's.

 

Keeping all of us entertained can be challenging! 

New Flip Side, teen area at Cook Children's.  We had lovely naps waiting between appointments.

Ft Worth botanical gardens, beautiful and well worth the visit!   And free! The paths are mainly accessible and the heat was tolerable.

Dallas World Aquarium is expensive, but it is so beautifully put together.  We had an amazing time!  I can't wait to go back there!  Accessibility issues only occurred a few times, so a B+.   The noise level was high so if over stimulation is an issue, ear plugs may be needed.  

6th Floor Museum at Deally Plaza was a personal treat and it is right around the corner from the Aquarium.  You may not know it, but I am a JFK fanatic!  I loved being able to touch history on such a personal level.

The first appointment, on June 12, was with a Pediatric Pain Specialist.  Thus was a special staffing within her specialty. She never asked for Libby's back story, she simply asked the amount of Libby's pain.   Libby is beginning with a low dose of pain killers given as needed.  Then we played until time for her MRI.  We expected to see marked changes commiserate with her physical changes.

  June 13, appointment with Dr. Acosta. He was not happy with one look at her and reviewed the MRI.  Surprise! There has been no additional atrophy with the damaged areas if her brain.   

There is no reason, based on her MRI for her severe increase in spasticity and other symptoms.  She has reached the limit prescription intervention of her spasticity.  We can continue to increase her current meds, but that will also increase the side effects.   The extreme amount if increased spasticity can and is doing permanent damage to her joints. At some point her joints will lock and will never release again. We have a possible future with a very pretty pretzel.

 

What's next? 

1. We increase her sinemet- her Parkinson's med.

2. We continue to try out the pain meds to see if they are affective.

3. We have a week tentatively scheduled to return to undergo IVIG therapy.  This is a "Hail Mary" for her body.  We know there are some risks involved with this therapy, but when faced with the alternatives, risks seem less daunting.

 http://abclocal.go.com/kgo/story?section=news/health&id=5749369

 

https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/en-US/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Drug%20Policies/IVIG_policy.pdf

 

  4. We begin the prayerful countdown to Libby getting the IBS or DBS, Deep Brain Stimulation, installed.  Yes, it is scary. Yes, it is another bandaid- we are almost out of band aids and no one can point us to an actual treatment.  The main risks are strokes and infections. They can now place the stimulators in one area that will help with the spasticity and the dystonia.

We will be looking at getting the initial implants in the fall and having the unit battery packs and activation over the winter.  Whatever it takes. 

http://www.mayfieldclinic.com/PE-DBS.htm

When a top rated group of neurologists discuss your child and say, "Hmmmm, well isn't that fascinating?  She is a puzzle......" it's not a good thing. 

Let us not forget that we have a beautiful 22 year old who continues to pave her own path.  I am blessed by her in many ways and I hope she knows how proud we are of her and how beloved she is to us!  Libby is all too often the squeaky wheel and so it is vital that Mariah know how important she is to us!   

While friends and family alternate between digest and freak out, Libby says she'd do whatever it takes to be able to move again.    Have to allow room for her wishes-Just a little food for thought.  Besides, I've never had a Franken-kid.