Living the Bonus

      

    Living with someone who has a chronic degenerative illness is like being in the eye of the storm.   We get up every day and go out with the intention to live our lives with purpose.   I might be able to forget to not pay attention to how much Libby has eaten, whether or not she has any skin breakdown, how many times she has gone to potty this week because we are busy living.  Meanwhile so many around us can get caught up in the fact that Liberty was once a healthy cantankerous child, and now her body fights against us in so many ways. So many only see the little body with the crazy hair and are saddened by her physical state. In the center there is a focus and we will just go and go and go and do and do and do.   She remains ornery, and we remain determined.   

     The storm Liberty creates has been building the more her body tries to stop us.  After the Baclofen pump surgery in November I have wanted to have a serious talk with her doc about what our forecast is.  About what I need to be on the lookout for as far as her health and any deterioration. 

      During her last appointment with Doctor Hottie, her main Neuro, I asked two difficult questions: Do you have any idea of a prognosis?   Do I need to retire early and stay home with her? 

       He paused, "I am not a fortune teller, but I have to be honest.  Years ago, when y'all first made it to me, she was progressing so fast, that I didn't think she'd make it this long.      She's twenty now and is somewhat stable.   Her Dystonia and Parkinson's will continue doing what they're doing, but overall she is stable.   What you've been living through lately isn't borrowed time; it's bonus time."  

       "Well, okay.  Guess I won't sell everything and head to Disneyworld."

        "You two already keep her busy and going, and if there are some bucket list items then I might start crossing them off.   Enjoying this time is important." 

           He teared up some as he spoke.  We continued talking about such weighty matters as if they were the weather.  We have to keep her weight steady and try to get her to gain some.   This weight loss is an issue that comes along with the Parkinson's and Dystonia package.  She is so tight/spastic, that she burns way more calories than we can get into her.  We do try to get more in.  And we keep trying. Her bowel and bladder issues also progress and we are limited in our interventions there.  This particular combo is not fun for any of us. 

 

         All those years ago during our visit with Doctor Hottie, he asked us if we would rather give her quality of life or quantity.  My answer was simple: quality.   Always.   So this idea of bonus time is a bit of a revelation for me.  I'm changing the way I think about the plans we make.   I am becoming more intentional about what we can put off for when we can afford it and what needs to happen much sooner.   I have moments where I am scared, but they are brushed away into the storm doesn't really concern me.  No time for fear- there is too much to do.   

        With this time we will go to the Canyon and hike with her.  We will find ways to get her to her favorite mountains, and hopefully to the ocean.  Don't get me wrong, we don't have a countdown clock and there is no depressing doomsday.   We are going to focus on the extra special nature of the blessing that is this day with our Liberty.   

 

Little Miss Stiff

     It's been too long since I've shared, and for that I apologize.   Like living in the eye of the storm we have been going 900 miles an hour in many different directions.  Liberty's photography class is going very well and she is enjoying her new attendant. Liberty loves going to Amarillo College and loves all her people there.  

      In January, Liberty got her first increase of the muscle relaxer Baclofen in her pump.  Before the pump was placed she was taking 100 mg by mouth every day.    She is now taking 12 mcg through her pump into her spinal fluid.  The increases have to be small due to danger of overdosing. The good news is that her mind has cleared somewhat and she is more vocal.   The downside is that she recognizes pain more often and is unbelievably stiff.  So stiff that she gets bruises on the back of her legs as her body tries to conform to toilet seats and her wheel chair.  So stiff that her whole body is rigid most of the time.   

     Due to scheduling her pump surgery at Thanksgiving, Liberty has not had Botox since before school started.   The difference in her little body is huge.  We hoped that the pump would provide more immediate relief, but sadly, that has not been the case.   As her Parkinson's and Dystonia progress, the stiffness will intensify.  We are pushing against the tide that continues to attack her neurological systems.   Each Baclofen increase should get us closer to  a more relaxed body; we hope.  

       Very soon we go to see her doctors and will get another increase of Baclofen in her pump, have her Deep Brain Stimulator checked, and get Botox once again.    Praying that she get some relief as we have no plans to slow down.  As long as we can- we will keep going.   We are going to live this life to the very fullest we can!  

     Blessings to all! 

On her birthday

 

You landed in this world

     Red headed and angry- on your due date.    

You raged until your sister sang to you

      And I formally welcomed you.  

You embodied your name

        Climbing out of your crib-before you could crawl.

You sang the notes to my music

         And joined Mariah's song.

You are the iron winged butterfly

         So delicate in body-with might in spirit.

You laugh and the other flyers answer 

         And we all rejoice.

You are carried so carefully

          And loved so completely.

Happy birthday my little love.   As long and we are able we will go and do and be all that we can.    

 

So little and all are so beautiful. 

 

And on this day you are 20. 

 

Dam Mom

     Greetings from the land of mourning the end of our Holiday Break.  Rachael returned to school last week; I start back Monday, and Libby starts a new semester the week after.  I have to say that for the first time in my teaching career I have avoided school work.  (I have read some educational articles, but that's it.)   I have slept, watched entire seasons of various shows, eaten, and run a lot.    I've tried to concentrate on recharging and focusing myself.   

      **Liberty turns 20 on Monday. I'll just let that sink in. 

      Libby has become the complainanator.  She is saying a lot more, that is clearer for the most part. I think that having the muscle relaxer, Baclofen, in her blood stream has helped her brain begin to clear.   She has a new laugh that is completely different from what she had two months ago.  

       Mariah and I took Libby for her Post-Op checkin and first Baclofen increase yesterday, a fast and furious trip that was well worth the time with Mariah.  We got to use the family theater room after we got to the hotel Thursday evening; it was awesome!   Getting time with both girls is priceless.  Having a grown child who is so fun to be around is a blessing.  

 

       

     The appointment with the neurosurgeon went very well.  Her DBS was checked and it is still doing its thing. Her pump incisions are all healed up and look great.   She has gained two pounds!  Not sure if that is the pump, the holiday foods, or me being with her more to nag.   She is now getting 140 mcg of Baclofen into her spinal fluid.   That is a 12% increase which is a good increase according to the physician's assistant in charge of Baclofen pump check-ins.   

      **Liberty turns 20 on Monday. Yep.

     We are asked constantly if Libby is getting better.   That's a hard one to answer.    The multiple conditions attacked her body don't really get better- they get treated.   The pump should relax her so that she will be, hopefully, more comfortable.    That's the hope.   

      Hope is a dam that has worn thin holding too many wishes safely aloft.   Liberty is not bending to sit very often any longer.    Hasn't been since maybe the summer.  She planks back into chairs, toilets, whatever.  Her back and legs are almost human boards, so she complains a lot.   But she can't always place the discomfort with right part of her body, we play find the pain/itch/cold spot/what the heck ever all over her little body.  She also hasn't been sleeping very well.   This is Dystonia and spasticity attacking intermingling their insidious tendrils through her body.   Any relaxing of her limbs and torso will be a blessing, but a dam doesn't go for some or a little or any. A dam strives for all.   

      I'm a DAM momma. I'm here to hold back all these threats against this child and her body.    I'm here to push for increases and treatments that will give her relief. I'm here stave off the complaints as her body  adjusts and fight back when her body can't.  I'm also here to nag, push, love, cajole and support both of my beautiful girls.     (I try to be a dam for Mariah as I can.)   

     We are blessed beyond measure and we are going to strive to go and do more.   We are going to live our story.  

       

Boring info...

      We don't go back until April and then it will be refill time.   Her pump has an onboard warning beeper that will sound if she gets low.   Yep, her belly will literally beep.   Fascinating stuff, here is more information http://www.medtronic.com/us-en/patients/treatments-therapies/drug-pump-severe-spasticity/what-is-it.html

    The Deep Brain Stimulator was implanted two and a half years ago to slow the progression of Parkinson's and spasticity.  

    

    The pump and DBS are amazing devices that are slowing the hateful and consistent progression; they are plugs in the dam.   

Be blessed.   

**Special thanks to Kristen Flowers and April Wolterstorff for Special Mommy conversations.   You make me want to be stronger and braver.  

**Liberty 

turns 

20

on

Monday. 

The Giving of Thanks

     The crispness of the air bites through as fall has slipped into winter. The autumn decorations have been put away and Christmas is everywhere. We had our Thanksgiving meal late and it was wonderful. Christmas is here and this year, like most, will be different for us. 

      Liberty's surgery was a success.  She now has a Baclofen pump in place.  She has been without muscle relaxant pills since Monday, November 21 at 4am.   She is not really looser, but her movements hint of the benefits we may see.  Her back, where the surgeon opened her spine, has been painful and bothersome.   Luckily she is healing quickly.   

     Monday will be five weeks post op and we are out of school.  Having truly seen Libby, in all her fragility, I am struggling.   I want her with me; my eyes on her.  She is excited to start back to school, and I just want her safe and happy.  I blame the added stress of this semester; there isand always will be so much to be done.  

     In just a few short weeks we will be making more major decisions in the day to day life of Liberty.   As her diseases progress, we have to choose how her days are spent.  Remaining adamant that Libby not sit at home all day, everyday, I can't allow her to become a couch potato.  The image of her just sitting there, vegging, breaks my heart. She  is still there, in there, and remains Liberty.     I don't want to allow her to lose her self. 

    Although, she can continue to take a few classes at our local junior college which may be determined by how the Baclofen pump affects her.   As we go back to Ft. Worth every month to increase the dosage pumping out of her pump, she will be losing, hopefully,  her lower body spasticity which may mean that standing to transfer from seats to wheelchair may be complicated.   We have her first increase in a week.  

      Tomorrow is Christmas and it is the first without my Mom near us.  Our Happy family will be celebrating Christmas  on Tuesday and Wednesday. 

      Regardless of when our celebration happens, we know how very blessed we are.  Pray you all feel loved and cherished throughout this season.  

Ileana 

Grateful for all who continue to cheer us on.  Pray 

Staying Afloat

       Today was a long day: one handsome  Neurologist, 20 injections, a Neurosurgeon, and a group of nurses I really care about made Liberty's double appointments enjoyable.  It was the whole facing the status of Liberty's conditions that tend to drag a Mom down.   

        Today I agreed to something that I once thought I would never want.   Agreeing to have a Pump put into my baby's abdomen was not on my acceptable list.  It's only been seven years ago this week, October, 2009, since Libby's body quit working and we were stumping the doctors at a hospital in Lubbock- a lifetime ago. Since then our reality has changed drastically and so, we adapt to try to keep up, and maybe someday, get ahead of the torrent that is Liberty's health.  

 

    Today, I finalized the schedule to have a pump placed inside Liberty will have a catheter running from the pump to her upper spine. The Pump will allow her to stop taking her muscle relaxer five times a day.  Part of her Brian fog could be gone.  This will, hopefully, reduce her spasticity and give her some relief.  Imagine the stiffness and pain caused by a very long muscles cramp in your leg.   Now imagine that tightness without the pin and needle sign of relaxation.   Yep, that's spasticity as it was explained to me. To me, understanding her pain feels like drowning.  

     Liberty hasn't had her Botox injections since the first week of June.  Her spasticity relentlessly increases; a lake after hard rains. She has dropped more weight; a side effect of her spasticity. Now, we will climb back on our raft of stubbornness and hold on until our date arrives.   

       We also drove to Dallas to visit my Mom in the hospital.  Her falls have made her upper arm break worse.  The move has been hard for all of us. Praying for all of us to adapt and find happiness in this new adventure.   

       Today, I choose to not let the assumed prognosis and the deluge of symptoms we aren't getting ahead of stop me from participating in this day.   And tomorrow.   And the next.   I will make sure that Libby keeps going and living life.   Period.  Now, I need to sleep.  Tomorrow, we have new waves to ride.   

Roll On

      Days are passing- cars in the highway.   On and on we go. School, volunteering, work out, sleep, plan, read, and pray in an endless cycle.     

      Two months ago I sold the Wii.  I got rid of it because Libby can only watch others play.     She wants to play, but her body can't. I couldn't stand to watch her just watch others play. My job is partially to keep her in the game. Active.  Not a spectator. I sold the Wii for very little money.  It wasn't an admission of defeat, just fact.    

       Today, I took her Amtryke back to a drop off area for Ambucs.  She can't hold herself up, her arms and legs don't move in the way needed to "ride" her tryke safely.  It looked differently four years ago.   More safety and support was added three years ago. As her Spasticity, Dystonia, and Parkinson's progress, her body just can't. 

        I admit to having cried a little after I returned it.  Walking back through the local shopping mall.  I left the note thanking  the Ambucs volunteers for the many happy miles and the blessings.  Hoping that the tryke could live in driving someone else's happiness.   I let it go. 

 

      Can't isn't a word I generally use,  but painfully, it has to be said. Her body can't, and someone else may be able to use what she can't.   Some days I get to say that Liberty's illness is just so not fair.   It's not fair.  It sucks, but that doesn't matter. Because we could cry and whine, or look the facts in the face, get into a car, and keep rolling through the highway of our days.  

      Live today and roll on.   However that looks for you- roll on.  

      Be blessed my friends.  

Ileana