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.