The Next Best Choice

Happy Back to School and a new normal!

We have had some drastic changes in the last couple of months and with each change, we continue to try to make the next right choice.

Libby is staying at home and an amazing new caregiver is coming to our home to take care of her.  Our previous caretakers have had major life changes, and we will miss seeing Mariah and Jennifer throughout the week. The search began. 

We couldn't find a caretaker that could watch Libby in Amarillo, and it just worked out that this caretaker would drive to Happy.   She is wonderful!  Not getting Libby into and out of the house, the car, and back again is also saving some of her energy.  The only caveat is that Libby has always driven back and forth to Amarillo with me. She has been about 10 to 15 minutes away from me.  Now, she is 36 miles away.  We are adjusting- separation anxiety is real.

Her body has changed in the last four months.  May 4th Libby bit her finger during a spastic episode.  (She continues to wear her safety mitten for her protection.)  By the end of May, Liberty was beginning to cry- a lot. She has been a happy and mostly content girl, so this felt like it was coming out of nowhere.  The crying came and stayed.  Some days it was for less than an hour.  Somedays it was for several hours: almost always in the evening. 

At the beginning of June, I took her to our local clinic to get all the regular tests run. She had a full body check and there was nothing.  She can't tell me what is wrong.  She can't tell me where it hurts. I was so worried that she was hurting and I couldn't fix it.  The tests were all normal; on paper she is healthy. We started trying to find what combinations would help and STOP the crying.  

We believe she has been Sundowning.  This is something common with Parkinsonism's. 

In July, we went on vacation and the wailing continued.  She has been eating more while we are at home, but I knew she was still losing weight.  Her body is burning up all the calories we can get in her due to her spasticity.  She moves all night long.  She moves all day as well. Burning everything she consumes. She also seemed to be getting so many bruises.  So many. Those who are malnourished tend to bruise easily.  

We did a lot this summer and for that, I am very grateful.

July 27, my mom passed on.

At my annual doctor appointment, July 28, I fell apart on the primary care doctor Libby and I share. I dumped the list of what I thought was happening: weight loss, period irregular, bruising and more.  He told me it may be time for Palliative Care for Libby.  I had never heard of it. He put orders in place for the initial screening.    

On August 2nd, we drove to Ft. Worth to get her Baclofen pump refilled and returned on August 3rd.  She is down almost ten pounds.  Devastating.  The Physician's Assistant we see in Ft. Worth carefully warned me that this will continue.    I said ugly words to God.  Many of them.

On August 4th, Libby got a new feeding tube as prescheduled.  That afternoon Libby had a seizure during our nap time.  It's been almost ten years since she has had one.  Or has it?  She could have had others that I missed.  Seizures are the worst.  (Could it have been seizure activity that brought on the spastic fit where she bit her finger?)   

We started school and I began planning and simplifying where we can.  We wIll be careful with how many times we take her out and about with us.  Although part of me wants to take her everywhere every day, that's not what her body is needing.  We need her to be calm and happy. Both Rachael and I need to teach.  It is such a part of who we are.  It is wonderful to be back in school and have this time with our new loves. Working with my students and peers is a gift.  I will continue teaching until I can't; making the next best choice for all of us.   

So, Liberty is officially in palliative care.  We are focusing on keeping her calm and comfortable. We have more people coming into the house checking on her and adjusting her meds.  We have no idea of a timeline, and I sure wish God would let me get a peek of it.  

When you turn the corner coming home and see this car it is surreal.  And painful.  And scary.  Yet I am

So grateful for the help. We are not choosing Hospice care at this time, but seeing that car made my heart turn over. 

Libby is 24.  She got her diagnosis at the age of 12.  We are at the halfway mark where she was healthy for 12 and fighting for over 12 years.  We had an initial estimate of four years, so these have been bonus years past what the doctors predicted. 

 Our mighty girl's body is tired and rightfully so. We are blessed in that she is waving the red flag at us and we have seen it.  Having this time to prepare the people we love is a gift.  A great gift.   We will continue to try the different meds and dosages to keep her comfortable.  Continue making the next best choice for her.  

We are not going to live in the world of sad. For everyone reading this, please don't focus on the sad.  I may want to hide under the bed for a while, but I can't stay there.  Focus on the joy and triumph of every day.  We have this bonus time to relish.  

 You are important.  You have each blessed us.  

You are loved and are love: Look More Like Love  

Other news, Liberty's chair finally came in after two months of waiting. 

The Escape of Tubi Wan

Let me tell you about a day we had this week.  This, like so much of our life, is not for the prude, nor the faint of heart...

Beautiful Thursday morning where I overslept and missed my early morning workout.   I was off campus in the afternoon for a meeting at Amarillo College and was able to pick Libby up little earlier than normal.  (I’m always excited if I can get her early.)

   At 4:40 we arrived  at the house and since it’s a Thursday I got her into the shower and prepared her for the poop assistance she gets on a very regulated schedule.  

  Bathing Libby sucks.  It just does. It has for years.  A good shower means that she will only cry a little and be mostly compliant- a conscientious objector limp limbs and all.  A bad shower means snot and drool induced wailing to the decibel that I am sure will one day get authorities called in.  This day she was medium level crying.  I’ll take that. 

  Showers are important not only to get her grownup smells taken care of, but also because  I need this time to get an overall inventory of her body and note the changes. 

  Usually I can get her showered, onto her potty chair, mostly dried off and at least a shirt on before the poop fest ensues.  This also gives me a chance to change the dressing and tape around her feeding tube.  I leave the tube covered and taped while showering. This was not usual. 

  As I started changing the dressing I noticed  a lot of extra ooziness.  A lot.  Then I realized that there was a lump under her tape.  It was the balloon that’s supposed to keep the dang tube inside of her precious belly.   

  Her tube was out- AGAIN. I don’t know if taking the tape off hurt more or she felt her belly, but now she is ugly crying, and it is a blood and belly ooze palooza.  

   She doesn’t stay safely on her potty chair by herself for very long. I tried to cover the belly hole a little and put a  gait belt on her.  Then I ran into the kitchen and got out the emergency “tool” box.   Grabbed extra gauze, peroxide since there wasn’t any rubbing alcohol, and a straight pin.   I washed off the tube and pin with hot water, peroxide and lots more water.   

   I ran back into the bathroom where she has continued her show stopping aria- rightly so.  The ooze palooza had abated a bit and I get the belly hole cleaned up a bit.    Then I squish the feeding tube’s balloon, pop it with the pin, squish it some more and try to guide the tube back into its tunnel into my kid’s stomach.   (I didn’t have the right syringe to deflate the tube’s balloon.) 

   It took several tries,  and Libby was not best pleased.  I used my left arm to hold her left arm and torso back while I eventually got the feeding tube back.   It- went- back- in.  Pulled a bra on her, a shirt and grabbed a feeding syringe to see if we are in luck.   Amazingly, her tube flushed perfectly.  No extra fluids squirted out, and the tube stayed in!   I taped the bejesus out that tube entry point and tried to get pre-scheduled poop out of the way.   Seriously laughed out loud.   After the pooping she calmed down. 

  Right at 5:00  I had started making the necessary phone calls to her primary care doctor, then her surgeon and then the appropriate ER.  Primary care doctor said to take her in after calling the surgeon.  

   I fed her the solid food dinner that we put into the oven when we got home between getting her fully dressed, packing up pills, my school bag, change of clothes for her and her feed supplies. We were loaded into the van.  Then Grandma Linda and Jennifer showed up.   Jennifer was bringing the kids to Happy for the the weekend and Linda was coming over to help out for the evening.    I tried to explain what was happening and we hit the highway.  We were fifteen minutes north of Happy when the surgeon called back.  

  He was happy that I got the tube back in and that it flushed successfully.  As long as it works and there are no issues we didn’t have to go to the ER.  Awesome.    We turned around and headed home.    

  We were home by 5:30, and  I had a little cleaning to get done.  Rachael swims on Thursday evening and gets home around 7:00.  I’m glad she missed the palooza part of our afternoon.  I filled her in while she was on her way home.   

   I’m grateful the tube went back in and has been behaving thus far.   We are two days away from this spectacular happening, and it still cracks me up.  

   The moral for me is to not over sleep.   But seriously, Libby’s belly could have its own sitcom.  

Libby is still dropping weight, but not as fast.   She’s getting around 1000 calories a day just through her tube.  We try to get her to eat as much real food as possible.  So the tube saga continues on.   She needs the nutrition and fluids the tube gives her.   I will need to make a surgical appointment at some point to get a new tube in.   I hope we can wait awhile and let her belly hole get over it’s recent aggravation.  We got lucky this time.  Nah, we’re continually blessed.  

Love to all.  

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. 

Fair as Fair Can Be

So

Much

In 

This 

Life 

Isn't 

Fair. 

Here's my list of things that are not fair....

I made such a list and had to delete it.  Said list was way too depressing. Right now one of the most unfair, tantrum worthy things is that Libby had to have her Deep Brain Stimulators' batteries replaced only 15 months since they were implanted. 

Libby had been at a very high setting for over six months which apparently wore her batteries down much faster than expected. In early October, we went to have her quarterly appointment for DBS check and Botox, the nurse asked whether or not her right battery, "should be on".  I had to leave the room before I threw up on everyone. Ugh.  Her battery hadn't been working for awhile and I had missed it.  I had blamed her increased spasticity and apraxia on her needing her Botox and the demanding schedule of her first semester of college. 

This is loopy picture #1caught between whines. 

We had been living her dream. We were going to work and both of our daughters were going to college full time. The art that she's been producing is amazing. She's been making it.  I mean really making it in college, with help from Mariah and Jennifer. Libby had made it through high school which was not promised; her living this long is truly amazing.  

Liberty's progression of secondary diseases has changed so much of all of our lives.  She is steadily losing weight, and I promise we are feeding her. Her swallowing issues remain constant as is the loss of tone throughout.  The ever changing bladder and bowel problems are NOT fair. Dystonia and Parkinson's are evil and they suck. This isn't fair. Liberty's illness is not fair. We should not have had to take this time to get the batteries switched out.  Not yet. Not now.   But if not now, when?  And aren't we lucky to have the DBS already implanted? 

After surgery, Rachael and I got to see a glimpse of what Libby would be like without her brain stimulators on and without her meds.  It was awful.  Terrifying. Legs locked straight out.  Fingers, hands, arms and neck twisted in a completely horrible position.  Awful.  The spastic nature of dystonia sucks. 

Yes, her DBS makes a difference. Her pills, especially Sinemet and Baclophen make a huge difference. 

http://professional.medtronic.com/pt/neuro/dbs-md/prod/activa-rc/index.htm#.Vkdt7yZOKnM

With this new battery comes the "three strike rule". If we let her battery die once, we have to call and have it reset.  Second time, we have to return to the hospital for training.  Third time we let it die, they take the rechargeable battery out.  We are approaching  bad weather season and my new fear is losing power and not being able to charge the charger.   Guess who will be buying a generator- like yesterday.  Her battery charger will hold one full battery recharge and then it has to be plugged in. Serious business having a battery operated kid. 

There are  times when I want to throw myself on the floor and kick and scream in full-on adult tantrum style.  There are other times when I want to hide under my bed, or in some other tiny space, and eat ruffles. Most of the time I follow my never ending list of to-dos and keep doing. All of the time I am humbled and grateful for the life WE are living. 

Love this blog and what she has to say.  I really appreciate this statement. 

"God’s will is not an event that happens to us, it’s how we respond to what happens." 

So, any tantrums are postponed. I can't control what these diseases are doing to Liberty's body, but I can remain vigilant and do everything I can. We are going to keep moving. Always grateful and not looking for what is fair.   Continuing to do more than is asked and more than is expected. Be blessed and be a blessing. 

http://www.foreverymom.com/quit-saying-everything-happens-for-a-reason/