The Mostly Short Version of the 12 Year Saga

This is not my story; this is Liberty's story. I am just cataloging her journey. It used to feel like a bite was being taken out of me every time I told her story.  Now, it is a review process that allows me the chance to remember and remind myself of how far we have come. 

(I took three older posts and added the last few years. I apologize if there are still repetitions.)

https://music.apple.com/us/album/tiny-dancer/1440643462?i=1440643464

Libby was born on her due date perfectly normal on January 9, 1997, in Ruidoso.  Her sister, Mariah, was my birthing coach.

She met every cognitive and physical measure early including crawling out of her crib at 9 months.  She was so adventurous that she could have been hurt many times.  Libby loved to climb and hide. She would climb up anything she could, including bookcases, weight racks, and later tops of cars and trees.  She earned the nickname "Eagle Eye" as she is able to see things others miss. 

If there was a way to push the boundary, she would find it. She is the personification of her name in every way.  She didn't care about rules and hated being told to speak to people on command, and Lord help you if you wanted her to hug someone.  Liberty didn't perform on command.  Now, let her listen to a song once or twice and she would memorize it.  By four I could challenge her to see if she could memorize a song faster than me.   I would begin a song lyric and she would finish it. 

We are outside people. We camped, hiked, worked in Palo Duro Canyon, and Geo-cached everywhere we could.   It was no big deal for us to play in the water in the canyon or return from hiking, and then check each other for bites.  It's awkward, but it is what you do, especially when the grasses are taller than your kids.  This is the Texas Panhandle and if the heat and cold don't kill you, then there are plenty of things that'll bite you.  

In 5th grade, Libby was Commended in her Reading. She even earned a phone call home from her elementary librarian with questions as to whether or not Libby needed to read Janet Evanovich and Lord of the Rings instead of her AR books. She was rocking her trumpeting skills in band, singing in front of everyone almost every week at church, and working on her basketball skills. The math and physical coordination genes did miss this kid.  Math and coordination did not come naturally. Socially, she preferred animals to people and would rather play than abide by any girly stuff.  She is our little wolf and LOVES dinosaurs.   

The night we returned from our last big camping trip in July 2007, where we had been to Southern Utah and Libby had what we believe was a massive seizure.   Mariah woke us up and saw Libby mid-seize on the top bunk. This changed everything.  We headed to the nearest hospital by ambulance and our testing trials began.  Even though there was blood taken, there was little analysis and we were only given the advice to get her seen by someone who deals with seizures.  We brought up several times the long camping trip and the land, lakes, and streams we had been swimming, fishing, and hiking in.   

The next morning we were sitting in our pediatrician's office and were then sent with referrals to get the EEG and EKG to see if there was anything neurologically wrong.  Over the next year, Libby had visited hospitals in Amarillo and Lubbock had three more seizures, many EKG and EEG's, MRI's, sleep studies, and lots of blood work.  Nothing.  Everything came back normal.  We carried paperwork that stated she had an Undiagnosed Seizure disorder.  

In November of 2007, Libby's Grandpa, Terry Collins left us.  She didn't cry or sing for months.   She stopped drawing and writing her stories. 

The next year, 2008-2009, 6th grade seemed fairly normal. Her big sister, Mariah, was a senior and the world was changing, so normal may be the wrong term.  Looking back there were many signs that something was affecting Liberty neurologically.  You don't know what you don't know. Her speech showed some weirdness, where she would drop off parts of words.  Interestingly, her singing remained outstanding.  Her ability to play her trumpet at the high level she had before remained static, except for sometimes she showed an inability to sustain the breath needed. Her handwriting got weird, really weird. But this is the kid who invented her own writing that was only to be read by animals with paws when she was three or four, so weird handwriting- eh.  She started sneaking spoons to school in her lunch box instead of forks.  She also started using bendy straws, we call them "sick straws" as well. 

Her shirts had some weird stains and I would find them hidden in weird places. She tried to shave her legs for the first time and called me crying because she had cut her leg, also not unusual.  Now, when she decided to use a razor to trim her eyebrow and called me with a thug-looking brow into the bathroom, I took the razor away from the kid who was starting to shake- alot.  Once we made it through Mariah's graduation and summer hit, we got Libby into singing lessons.  We did elocution practice at home, as well as some handwriting review.  We spent that summer building up Libby's self-esteem.  (I thought she was acting out because of the loss of her Grandpa and her sister graduating.)

I noticed a tremor in her hands and started watching her blood sugars and eating patterns.  Diabetes does run in my family. I noticed that she spilled food a lot and had trouble drinking unless she used a straw.   She had probably been having hand tremors for a while and had hidden it. I didn't catch it.  

In July 2009, she started her menstrual cycle.  In August she passed her yearly Pediatric check-up and we were reminded to keep an eye on her emotions as she may be depressed and reacting to Mariah's graduating and the many other changes.  She also passed her athletic physical to play basketball and tennis.  

We went on a regular hike, a long hot hike, and I basically had to carry Libby back.  She said her left leg hurt and didn't feel right.  I thought she was being a wolf princess butt and was claiming fatigue. 

7th grade started and her teachers began contacting us about changes they were noticing in Libby.  She was referred to a local psychiatrist.  I made an appointment for the middle of October to check in with our Pediatrician. The school's diagnostician did some cognitive tests and called me on October 2, 2009, my 39th birthday.  She said that she thought that what was going on with Libby was biological and that she thought something was wrong.  

By the end of the first six weeks of her 7th-grade year, 2009-2010, Libby was falling a lot, her left arm was curling in whenever she run, she couldn't get a spoon to her mouth, she couldn't rinse out her hair, her handwriting was illegible, her speech was disintegrating and she collapsed one day on the way home from school.  An ambulance brought her to the nearest clinic, her Pediatrician's clinic, and all tests showed nothing.  She must be very tired. 

We saw our regular doctor and then more tests at the hospital in Amarillo, then on to Lubbock.  The Neurologist was in Lubbock, the same one that we had seen for the seizures. We were referred to Cook Children's in Ft. Worth. On Rachael's birthday, November 12th, we arrived on a Thursday evening in November, by now we are helping her shower, dress, and feed herself. That Friday, the first doctor we saw referred us to another and ordered tests.  We were to go home, pack, and return on Monday prepared for a long stay.  

We spent the weekend putting up our Christmas decorations almost as if we had the recognition that the return visit to Cooks would be a more extensive stay. We also had Mariah come home so we could talk to her and prepare her. For what, we didn't know. From Rachael: I can vividly remember being up on the roof of the house with Mariah hanging Christmas lights and talking to her about the very real possibilities of where we might be headed with Liberty and what a diagnosis could bring our way. I didn't even know and now I was having to prepare Mariah that her sister might never be the same again. It wasn't the same jolly time we'd had in previous years putting up lights with Christmas songs playing in the background. 

We were in the hospital for 14 days.  During that time every sort of test you can imagine was run. At first, they thought she had a very progressive form of early-onset Multiple Sclerosis, or Huntington's, or a form of Palsy, or maybe she had gone through multiple strokes, or ALS, Wilson's, Meningitis, HIV, and more that we cannot even remember. Libby had blood tests, EKG, EEG, Lumbar puncture, Liver biopsy, skin biopsies, 24-hour urine catch, more blood tests, and an MRI with and without resolution.

The MRI showed an area in her right frontal lobe the size of a quarter that had undergone either atrophy or necrosis.  Her brain was also smaller than it should be. Basically, that portion was dead and not working.  This area had been missed by all the other MRI machines she had been in.  The one at Cook Children's had more power or resolution.  What our Neuro doctor, Dr. Hottie said, is that something had probably been killing that part of her brain for a long time and that she had slowly been losing her fine and major motor skills for some time.  It had finally reached a critical mass and that is why it seemed like she had fallen apart all at once.  

Her Lumbar puncture showed something, a possible form of Encephalitis. He gathered a crew of specialists, including a Geneticist, who did all of the background testing possible.  Down to requesting the chemical results from our water system here at home in Happy.  They also had Carbon Dioxide detectors placed in our house just to make sure.  We asked again if she could have caught something during our outdoor exploits.  

We were told at a staffing meeting, think of the TV show "House", to start thinking about whether we wanted quality or quantity of life for Libby.  We chose quality that day. We still choose quality. We were released on Thanksgiving Day, 2009, with two more referrals back home, therapy referrals, a prescription for a Parkinson's medication, Sinemet, and follow-up appointments at Cook Children's.  We were told to get her baptized and prepare our family, at the rate her degeneration was progressing we didn't have much time.

After we returned, the first appointment was a basic eye appointment for further testing for Wilson's or other genetic abnormalities.  Christmas happened.  New Year happened.  We were in shock and grateful to be home.  My little wolf cub doesn't do well in captivity.  On January 2, we saw an Ophthalmologist.  After going through the whole background, he performed his regular eye exams and asked if she had been tested for Lyme disease.  He ordered blood tests, didn't know eye doctors could do that, for Cat Scratch Fever, Lyme, and Rocky Mountain Spotted Fever.  

January 10, 2010, the results came back positive for Lyme through the ELISA Lyme test.  I called our doc at Cook Children's and left a message about the results.  He called back and said this could have been caused by Lyme. Our local Pediatric doc and Dr. Hottie agreed to a two-week course of antibiotics to cure her of Lyme.  That is what the American Medical Association, AMA, recommends.  

She wasn't cured. We began researching immediately and found that there are cases worldwide of terrible unexplained illnesses that have been traced back to Lyme. We also learned of governments worldwide not treating Chronic or long-term Lyme. We also learned that there should have been a bulls-eye rash followed by flu-like symptoms. Libby never had a rash.  When camping, we showered in twos.  After hiking we checked each other.  We learned that many, many cases of Lyme go unnoticed because there is no rash and no flu-like symptoms.  We also learned that Lyme was rare in our area.  We also learned that many people die because Lyme likes to attack hearts.  Libby's heart is still good.  Her neurological state has been decimated. 

We have continued to get our main treatments and testing done in Ft. Worth.  Each time there may be a new specialist to meet, different tests to be done, new meds to try, something. In 2012, we met with a Pediatric Rheumatologist and an Immunologist.  They ordered a PIC line and a six-week protocol of heavy-duty antibiotics since that was then what the American Medical Association recommended for tougher cases of Lyme.  She wasn't cured. 

She has never tested positive for anything else.  Most gratefully she has not had any other seizures until recently. 

We have had our genes mapped and there is nothing genetically wrong with her.  She has been diagnosed with Secondary Parkinson's, Spasticity, Ataxia, Speech Apraxia, and my least favorite, Dystonia. On medical paperwork, she has Arthropod-Borne Encephalitis.  

She has had two sets of AFO leg braces, lots of hand braces, and a neck brace.  She has had three official wheelchairs.

She takes Sinemet, Baclofen, and Clonazepam. What started as a turned in left hand, has traveled to her left leg, then foot, then right hand, then right leg, the right foot, and her neck.  Parkinson's has given us an additional gift with swallowing issues that are made worse by the Botox that loosens up the rest of her body.

In 2015-Libby's left foot had reached 90% Achilles contracture and she had bi-lateral tendon release.  We believed after recovery we would work on walking more.  That didn't help much as her body fought back with a vengeance. Liberty graduated from high school where she was active in art, choir, and community service. She was voted Caprock Prom Queen in 2015. 

In the summer of 2015, we completed the required Department of Aging and Rehabilitative services Neuro-Cognitive testing.  They had to prove whether or not she was employable in order to provide services.  We had to go through DARS to help get services for Libby and college.  DARS was the gatekeeper to many services for Libby.   We really still didn't know how life after high school will look for her, but we knew that she will have a life. 

In July 2015- Deep Brain Stimulators were inserted that we charged about every other day.

She has been on a five pill-a-day schedule for years; her main one is the Parkinson’s drug. She had a baclofen pump inserted into her abdomen as of last Thanksgiving 2016.

In 2018, she now had the neurological and muscular diagnosis of Parkinson’s, Bladder and Sphincter Dyssynergia, dystonia, spasticity, ataxia, and speech apraxia.  

We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water.   Libby’s body continued to stiffen and struggle. We fought her spasticity with many, many Botox injections until they stopped working in 2019. We have gone through four different therapy places. 

In November 2019, we pursued getting Liberty. She has been dropping weight for the last three years. We went through three different procedures to get the feeding tube placed. Because of the way her body twisted, her stomach had lodged itself partly under her rib cage and could not be inserted easily. This was the last time she was placed under anesthesia for a procedure.

Our Neuro, Dr. Hottie, couldn't give us a prognosis or any kind of timeline.  He told us that we have been living on “bonus time” for a while.  She was outside of any medical normalcy. As we talked about the progression of her diseases he reminded us that these last years are beyond what he could have predicted.  

In March 2020, we went into COViD lockdown.  Libby was home with us throughout that spring and summer.  When we went back to our classrooms, she stayed safe due to her careful caregivers.   Her body continually declined: her stiffening was ever-present.  We have increased her clonazepam to offer some relief.   Her ability to speak and answer basic questions dwindled away.  Her weight continued to drop. 

In May of 2021, Libby's Parkinson bite caught her index finger in her mouth and broke the skin.  She bit her finger so very hard. She has worn a specially ordered hand mitten since then.  (Now I believe she had a seizure and her jaw locked down.)

As we prepared to finish out the school year, Libby began crying almost every night. By the end of the month, she is crying every evening: uncontrollable and inconsolable. This continued throughout the summer. Liberty's period has stopped.   

In June we were asking her local doctor for guidance.  In July, we knew she was Sundowning.  This is not the quality of life we have focussed on.  We began making plans for Libby to stay at home with caretakers when we started school. Getting her in and out of the cars and into wheelchairs and out take a toll on her very little body. 

In August we went to get her baclofen pump refilled at Cook's.  The next day we got her feeding tube replaced in Amarillo. 

 On August 4th Libby had a full seizure. One of the few things that I have pleaded with God about is seizures. They are terrifying. She has had several more since then. We are now of Keppra to keep the seizures at bay.    

On August 19, we began receiving Palliative Care. This is a blessing. It is a true gift to have support for the caretakers.  

On October 11, we signed Liberty in the Hospice Care program.  She needs more and more eyes on her. More support.  She is changing incrementally and I don't want to miss it. Having this wonderful program in place has given me some peace.  We want her to be calm and happy as long as possible, but most of all I want her to be HER.  Some days it doesn't seem like she is my Libby: my wolf girl.  Then the next day she will smile and giggle and it's like the sun shines again.  

https://music.apple.com/us/album/grit-and-grace/1527828770?i=1527828773

School remains my safe place. We have wonderful classes and could not be more blessed by our campuses and our peers.  Each day I am ready to be on campus and then want to race home as soon as I can.  This is hard.  Loving her through this is hard.  And it is beautiful.   

Every day we are blessed. This continues to be our bonus time with her.  This is not my story to tell, this is hers. We continue to learn Liberty.  

You are loved.

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. 

Busy

 
      Sometimes I dream of the Liberty we had.  In my dream she is supposed to be inside playing, instead she is high up in a tree.  Her hair is in pig-tails and she is wearing her Crocodile Hunter outfit. There are dinosaurs in her pockets. Or laying on the trampoline with her dogs. Or she's built a blanket fort and is singing to her stuffed animals, or her dinosaurs.  Whatever is in this version of the Liberty dream, you can assume she is doing her own thing and she is busy.  And I am busy as well. I prayed several times for this dream to change and that I would go and watch her play (or join her). Sometimes it happens. 
      I was not a child who could be still.  Ever.  From what I have been told, I was busy.   About the only things that seemed to settle me were music or sitting on Grandma's lap while she read to me. Beautiful Mariah could sit and play or cuddle and watch a movie- most of the time. Like the wind, she could have some super active times, but her movies would keep her attention for long periods of time. Now, Liberty.  Sweet Liberty was always busy as well.  She climbed out of her crib at nine months old.  She was uncontainable from then on. Grandma told me Libby's truth was in her name.   I had claimed her business when I named her.   That hasn't changed much. 
       Even now, Liberty is busy.  Her body is stiff and mostly unmoveable.  She doesn't have control over it, but her body continues to move.  All the time.  Sleeping, wide awake, eating, laughing, or pottying her body is moving to its own rhythm.  She has Deep Brain Stimulators, one of each side of her brain to calm her body down. She has a Baclofen pump that is routed through her spinal column giving her muscle relaxant continuously throughout the day.  She takes a Parkinson's med five times a day to slow the jerkiness of her muscles.  All of that and yet she is busy.
       During this time of quarantine, I have been able to see Libby for who she is now.  She is still sweet and funny we just have to pay attention to when she can let it out.  She gets impatient at times.  She is sappy and lovey at times.   She is tired a lot of the time. Blessed by this time with her, I have been able to get to know and see her for who she is now.   This is not the child I had ten years ago.  Or five. Or two years ago.  She is different.  She has to be.  Her body and brain has betrayed her, and all of us, in many ways.  I could be angry and sad, so very sad, at this betrayal, but that has consumed far too much energy already.  I can see her for the completely different and beautiful person she is.
      She still has a voice, of sorts.  Even though we are down to one-syllable words generally as responses.  I miss getting to actually converse with her.  So much.  I'd much rather talk with her instead of talking for her, but here we are.
      Please do not think this is a sad post.  It really isn't.  For the first time in my life as a mother, I have been home with my kid.  I never got to be home with Mariah.  I started working full time when Mariah was five weeks old.  I returned to work when Libby was six weeks old.  I have never not had at least one full-time job or at least two part-time jobs. I missed so much of my girls working for us.  So much.   I regret the time I missed with them, but I did what I thought I needed to do to provide for them. I now know this regular mom guilt.  I was busy.
      This time that quarantine has given us has been a blessing.  I believe this time has prepared me in some ways for our future with Liberty.  I feel more intuned to her body than I have in a very long time.  Life may not ever be this slow again.  Hopefully never again due to a viral pandemic!  I have learned so much from this time and do not want everything to go back to normal.   Our normal was already wonky, and I look forward to creating a new normal.  A normal that is slower in some ways.

       **We have been converting some of our family movies to digital downloads.  I was able to actually one video with Liberty playing.  For years, I could not even look at her younger pictures.  I feared I would cleave in two.  The half of me that is Liberty's would implode.  But I didn't tear apart. I saw the pictures from before.  Before the illness.  Before her body quit.  I watched and cried.  I let myself just cry and laugh and cry some more.  I sat in that revelry.  The beautiful sadness that is this kind of change in a child, or any loved one.  I sat there and watched.   And it hurt to my core, but I did not rip apart. I needed to not be busy and simply see her when she was.  For who she was so that I could see her more clearly today.  Isn't that crazy?!
       Let's think now about how to not be so busy.

        Be blessed and stay safe.  Know that you loved and needed.  We all need each other.

Swimming against the tide

If you’ve ever been swimming in open water you know the sensation as you wade into the water.   Deeper and deeper you walk forward anticipating the moment you become weightless and the water carries you.  Whether there is a tide or not, the water takes over some degree of control.  Even the strongest of swimmers can be swept away unexpectedly.    

Arms pulling forward and legs kicking for and against the tide to advance towards your destination an agreement between you and the water is found. With practice breathing only adds to the rhythmic action of the swim.  Pull, pull, breathe.  Pull, pull, breathe.   Forward I go.   

During some swims I can cometely zone out of the lists of to do’s and issues to conquer.  Other times the current, or an errant ball from a group of little swimmers,  takes me out of my reverie catching me   off guard.   Breathing and swim strokes are disrupted.    Reality returns and I lose my breath.      I already have too much reality.  

This long distance swim, waiting for and knowing a rip tide can pull you under any time, IS life with Liberty.   

I started back to school two weeks ago and my students  started Tuesday.  It has been amazing to start getting to know this brilliant group of people.  I am already excited to see them every day.   

We’ve been just rolling on until yesterday  afternoon when something happened with her feeding tube.  I flushed it and changed the dressing.   Seemed mostly okay.  We went about our errands and finally made it home for shower and nite-nite.  

This morning I couldn’t get the formula to go into her  tube.  The feeding tube was no longer placed correctly and has dislodged.  Instead of going and teaching the first Friday of this school year I brought her to the ER.    

No matter how strong of a swimmer I am I can never seem to anticipate the waves.  I can calculate the crazy effect of the full moon on the tides, but not the effect of having Liberty. 

Here’s the cyclonic issue: is it worth replacing the tube again?    This will be the fourth time since last Thanksgiving.  It isn’t fun holding Libby through each replacement.   Hoping and praying that once again they can simply trace the last track and put in a new feeding tube. Praying for  a few more extra calories for this day.  A few more.  The singular  upside is that her weight has been fairly stable since March.  

I’ve had some very difficult and honest conversations with her primary care doctor in the last six months.   Since there are no cases exactly like hers there are no maps to follow.   Have been advised to keep her happy and as healthy as possible... And to make sure our Power of Attorney covers a DNR.   I will ensure Libby’s happiness and comfort every  moment I can.   

Can’t train enough to be prepared for any of this really.   Just have to continue to be the best swimmer possible.   And push to keep swimming.  

Because they were going to have to change the size of Libby’s tube, they had to sedate her. She now has a shiny new tube and we are exhausted.    Time to continue the swim. 

Love to all

Ileana 

Juggling Princess Pincushion

Hello from the land of Mom of two kids who are both in college.  Everyday we are trading out books, bags, hand and leg braces, meals, pills, potty times and homework.  

She is loving her classes and has even admitted to having "fun" in her new math class. Her reading class is interesting.  She reads lists of short passages and then answers questions over the text.  This is online work and either one of her scribes, Jennifer, or Mariah record her answers.   Her graphic design and beginning drawing courses are exciting.  She has really been turning out amazing work. 

The top is the model, the bottom is hers.

Ball and cone to work on shading.  I can't really attest to what all she is drawing because she is producing so much in her classes. 

Of course, her portrait of Her beloved Bryce just kills me. This is mixed torn paper. 

It's feels like we have adapted to college fairly well.  The longer class periods and the many hours of homework just make this juggling act more interesting. 

Liberty hasn't had Botox since June 3. Scheduling around all of the school schedules and her doctor's schedule was difficult.   We've had this appointment since early August; it was the first time we could get in.  

Dr. Acosta was happy with her feet and how well she is holding her ability to have 90 degree flexion. 

Libby has been fighting us over not wanting to eat very much, and we are not sure if it's more of her jaw hurting or because she worries about getting too big.  She has also fought over taking her pills, especially the relief pills.  They make her foggy and she can't draw as well after having them.  So, she's willing to be a shakey locked up mess over foggy brained. When she's locked up she can't really use her arms, so not taking her pills is a lose-lose situation.  Stubborn!

She took Botox all over her body and didn't complain much. She even got some in the bottom of her feet. She may whine to us, but she really is tough. Because her neck has been extremely tight, she is struggling to keep it up in class and to do her computer lab hours, lots of Botox was focussed on her jaw and neck.  

I hate seeing her hurt and locked up; it is only because she gets relief after these treatments that we continue.  So many sticks with so many needles.  We have thickening agents on order, just in case swallowing becomes an issue.

While the DBS Nurse Practioner was checking her batteries she noticed that one, her right side battery, wasn't working at full charge. I had to step out of the room.  Instantly I am nauseous and can't breathe. Her left side had been tightening, but I really thought it was the lack of Botox and the immense strain college has been on her body.  I missed the fact that one of her batteries are low and that's my job. 

http://www.medtronic.com/patients/essential-tremor/therapy/dbs-therapy/activa-rc/

She will have to have her battery replaced and there are now a rechargeable version available.  Instead of two batteries, one for each side she will have only one that charges both sides.  She have to wear a charger for an hour everyday. Apparently they don't have a solar charged battery, yet.  Then I could just sit her out in the sunshine. 

We wait to hear from the Neuro Surgeon about the date. We will try to get it after the semester ends.  It is a day surgery, which makes me less fearful of missing school. Her next Botox is in February.

Gotta smile at the Libby nest made for napping. 

Princess Pincussion is hungry and fussy. Typical day with college kid. 

Yes, those are Libby's legs hanging out of the bathtub at our hotel. When we travel, it has become safer to just sit her down into the water, sideways and bathe her.  She doesn't hate it, so that's a plus.  *No teens were embarrassed during this photo shoot.