Libby's Hobbit feet

Tomorrow is Libby's Achille's Release surgery.   She has been nervous, scared, and almost excited.   Every new procedure is scary.   She shows how worried she is about something by refusing to help with getting dressed, by refusing to eat, by refusing to potty, by generally being a butt head.  Think of the limp noodle position that protestors used during the 60's.  What makes this a little bit harder is two fold: she isn't swallowing well so we are on modified soft and thickened food/drink diet and the kid has to potty.  You can smile now as we have practiced who lifts and who wipes.    

(We will be alternating those jobs using rock, paper, scissors...) 

 She knows we have been lifting and working out more to get ready for the dead lifting we will have to do.  At first she won't be able to stand on her feet at all, which means that when we transfer from wheelchair to couch, wheelchair to toilet, wheelchair to car, wheelchair to bed- we are lifting her.    Our practice sessions are hilarious, at least to us. 

  Always want everyone to know why we are doing what we are doing, here is a picture of her cute hobbit feet.   They're all turned in. 

This is the resting position, there are calloused in the outside of her little toe from walking. 

The hammer toes come along with her spastic retraction and her Parkinson's toe walk.  Her foot does not go to 90 degrees. Hasn't for a long time which is why we have worn AFO's, had Botox, and therapy. 

https://www.aofas.org/footcaremd/treatments/Pages/Percutaneous-Achilles-Tendon-Lengthening.aspx

Here is a good link for information.  

What a freaking blessed journey we're on.   And yes, I did shave her feet. 

A Year of Firsts

I mostly hate today.  Father's Day is difficult for those raised in splintered homes. All of my life, I wished to have a chance at a Father who was there and was allowed to be there.   I was one of the first in my classes in elematary school that was from a single parent home. I had my Mom, my Grandmother, my Granny, my Great Aunts, several extra neighborhood Moms, and my Aunts. In many ways I was blessed.   I had so many a strong women to build myself from.  Now, they are gone.  Several of our friends have just lost her Dad, and we all have lost people emotionally.  This is for all of us.

Grief is horrible.   Grief reveals much and makes us capable of doing the terrible and the beautiful.  Dealing with it helps. 

 Grief is awful and can take over your entire being if you let it.  I know it has spent too much time in our little world as we grieve for those who we have lost to passing on, for those who have simply left, and for those who have progressive debilitating illnesses.   What we repeat over and over again to each other is "this is another first". 

After losing someone, regardless of relationship, you have a year of firsts. The first holidays without them, Thanksgiving, Christmas, and Whatever holiday, the first time you make their favorite cake and remember they're gone, the first time you pick up the phone to call and no one who loves you will answer, the first "love you" card that goes unread, and so much more.  

The first time you want to call and ask about how to fix an outdoor electrical line, mend a fence, and which tire is best. The first time you want to call and ask about doctor visits, cousins, and update on Libby.  

The first time your heart hurts because another you love is mentally, physically, or emotionally broken and there is no answer, no advice and you need to make decisions. 

This part of grieving is not part of any one of the grief cycle but goes through  various stages.   I have wanted to call to tell both my Grandma's that Libby is having another surgery, to hopefully save another part of her,  and I can't dial the numbers because they are gone. 

Both Terry Collins and Bert Jennings are Veterans and are gone. Libby spots Vets and will beg for cash from me to give to them.  Then she asks to be wheeled by to give them whatever money she has. She then says thank you. I think she does this because she remembers talks about Military Vets and their need for respect for their service. Now, neither of our girls have a Grandfather.

I am proud of where I have come from and through. 

In this year of firsts without my Grandmothers and without other family members, we begin a fight to get Libby into and through college.   Along with supporting Mariah as much as she allows.  (Helping adult children through grief is worse.  She is in pain that I can't cure.  She too has lost.)

We begin, and continue, to show my mom and Rachael's mom, Linda, as much love and security as possible.

Our future is very much about taking care of those who hold us together.    We are very blessed. 

Every time after you've lost a loved one  you have to celebrate or go through something without your missing loved one, know that you have many new firsts.   Many that may hurt and many that will help you grow if you can let it.   When this happens allow yourself to feel; I'm not as good at this part.  Cry, pray, meditate, feel, react, and then send a thankful thought up that you had them in your life.  

Know this: most people do the very best they can do for family.   Come along with me and let the guilt go, ask forgiveness- whether granted or not- and move past it into the blessings. 

For all fathers, regardless of legalities and DNA, bless you! 

You are all blessed, though some may feel broken, now work towards blessing. Celebrate the strength given by those you've lost throughout the year of firsts.

Libby's Story

In the past several weeks we have met two new doctors, two new therapists, and Libby has attracted several admirers.  She seems to gather people to her and each one, whether new professional or random passerby wants to know her story.  It used to feel like a bite was being taken out of me every time I told the story.  Now, it is a review process that allows me the chance to remember and remind myself of how far we have come.

Libby was born on her due date perfectly normal.  She had RSV a couple of times as was going around in 1999, other than that no problems.

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 nick name "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 could begin a song lyric and she would finish it.

We were 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 kid.  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.

5th grade, Libby was Commended in her Reading, was rocking her trumpeting skills in band, singing in front of everyone 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 play girly stuff.  She is my little wolf.  

The night we returned from our last big camping trip, where we had been to Southern Utah in 2007 and Libby had what we believe was a seizure.   Mariah woke us up and seeing Libby mid-seize on the top bunk 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 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 Collins left us.  She didn't cry for months.   She stopped drawing and writing her stories.

The next year, 2008-2009, 6th grade seemed fairly normal. August, 2008, we lost her Grandfather Jennings. 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 the 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 brown into the bathroom, I took the razor away from the kid who was shaking.  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 runs 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 hid 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 and many 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 princess butt and was tired.

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 ran, 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 test 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.  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 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, maybe she had gone through multiple strokes, ALS, Wilson's, Meningitis, HIV, and more that we cannot even remember. Libby had blood tests, EKG, EEG, Lumbar puncture, Liver biopsy, more blood tests, and an MRI with and without resolution.

The MRI showed an area in her right frontal lobe the size of quarter which had undergone 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 doctor, Libby named him 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 all of that 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, think of the TV show "House", to start thinking about whether we wanted quality or quantity of life for Libby.  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.

The first appointment was a basic eye appointment further testing for Wilson's, or other genetic abnormalities.  Christmas happened.  New Years 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 Opthmologist.  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 doctor's 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 world wide of terrible unexplained illnesses that have been traced back to Lyme. We also learned of governments' world-wide not treating Chronic or long term Lyme.   We also learned that there should have been a bulls-eye rash followed by flu like symptoms, although the bulls-eye rash does not appear in about half of the Lyme cases.  Libby never had a rash.  When camping, we showered in two's.  After hiking we checked each other.  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.

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.   Because her body has progressed in its muscular retraction and contraction, Libby now has Deep Brain Stimulator's.  We get the battery charge adjusted every three months, along with Botox injections.

She has had two sets of AFO leg braces, lots of hand braces and a neck brace.  We are on our second wheelchair and are looking into a third. we have gone through three different therapy places and are starting on our fourth.

She takes Sinemet, Baclofen, and Chlonazepam.  What started as a turned in left hand, has travelled 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.

Libby's left foot has reached 90% Achille's contracture and we will be having bi-lateral tendon release in just over a week.   Then we can work on walking more.  We may also have a similar surgery done on her hands.  Anything to help her move better.

Before her DBS she wanted to dance at her prom and walk the stage, she's done both. 

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

Liberty wants to be an artist.  Her body is degenerating at a progressive rate and yet her mind and her personality are still there.  She has hopes and dreams and is the toughest person I know.  This is not my story to tell, this is hers.  We are still learning Liberty.

Good news and more pushing

We met with advisors at Libby's college of choice today to get Libby's schedule, accommodations, and classes figured out.   She has her school ID!  She has a schedule!  She has a degree plan!  We have a plan that involves lots of hard work and her following her dream of studying and furthering her love of art. We decided on an Associates Degree which means that she will be pushed in math classes, as it is easier to back off into a certificate program than to step up into an Associates Degree. My worries have not been as much about in class, but more about if she would be safe in between classes.   Wow. Today changed so much. 

This process began last May with some accommodation requests for a test and has continued.    Libby requires a great deal of creative thinking, latitude, and accommodations. 

Some of you who are reading don't know the difference, as many don't, between accommodations and modifications.   Think of going to a hotel and asking for a room on a lower floor because it makes it easier to get your dog out to walk in the mornings.  That is an accommodation as nothing about the room or the hotel rules and regulations have been altered.  Asking for a doggy door to be added or taken away from your hotel room is a modification. 

In education, we can accommodate students who learn differently by giving them access to the books, lectures, and/or notes as a recording.  We can accommodate by allowing a scribe, Braille, an ASL interpreter, and a seat away from distractions.  In English classes I may assign three essays over a span of many weeks.  Each essay may consist of the culmination of mini and major lessons on thesis statements, supporting details, and embedding quotations. An accommodation would be to assign and work through one essay with a student who struggles, while making sure that each part of the essay was there.   A modification would mean that the entire focus would change and the student would only write using one of the three components that the other students were required to write.   

Accommodations make learning more accessible and modifications usually mean that a change is made in the curriculum.  

Every person learns differently.   If you think back to your education there are probably classes and subjects you just didn't get. Maybe with a little ingenuity you would have been more successful? 

This is what it means to me to differentiate instruction.    This is the No Excuses part of my belief.  It is up to the educator to reach the student and students generally rise above expectation. 

Apparently, Liberty and her needs may be outside of adult education.  Colleges are held to the same standard as every school when it comes to allowable accommodation and modifications.  Every school is different and private schools, those without any federal funding, do not have to accommodate. The content of the course cannot be fundamentally altered.   Altered is modified curriculum multipled.

 

In a meeting, in front of Libby, it was strongly implied that she would not be able to understand or do the work.  "This is not high school and we do not make courses easier.  She would be expected to learn and do the work".   

As a teacher, I would never say things like this in front of a child.  All of this was said in front of Libby as if she were deaf.  Libby remembers and hears more than anyone wants to know.  Rachael removed Libby from the room until our meeting was over.    

Libby already knows what she can't do. She has heard it from doctors and from us.  She can't move out and get married. She can't go on real dates- right now. She is beautiful and vulnerable and brilliant. And as I said  while they were  out of the room, she has done everything she was supposed to.  She did her work. She kept her attendance up, despite doctor appointments, treatments and surgeries. She has listened and read every book assigned, on our dime, and discussed it as much as her vocalization allowed.   She can tell you what she's learned, draw it for you, type it (slowly), and turn it in.   She does her math by being given an question and choosing formulas or solutions.  She will work it out in her head and choose an answer. 

When she creates art it happens in a beautiful variety of ways.  Art means to create meaning using a variety of methods. Her methods may be different, but they are hers.  Her art represents her, and it seems, that she may be kept from her art because she does not fit in a definable box that is easily recognized by others. 

Her hands, arms, legs, and mouth may not work but her brain does.  She has scholarships that were awarded based on her accomplishments, not on who she is.     Does each kid deserve a chance? 

After this head against a brick wall meeting we headed over to drop off other paperwork and give her the campus tour she didn't get to take.   She didn't even want to pick out a t-shirt. She didn't want to discuss college this evening.  Not even before our prayers.   She refused a picture with her first college shirt.

It would be easier to get her SSDI and let her sit at home all day. She has dreams and possibilities.  I can't let this one hurdle of inviting a group of people to join our learning curve stop us.  

Nothing comes easy. We don't have the support of so many relatives that giving up on her means everything- just as those whose support means everything else.   

At the end of this journey we have to be able to say that we did what was right and did it with all our might.  

When we as educators give up hope is the moment our students completely stop trying. 

Rachael's note: perhaps I may be a bit too blunt, but I cannot sit by and allow anyone to speak as if Liberty were not present in the room. As an educator, I also believe that we should never, never point out what a person can't do. We already fight our own images of self worth without anyone else adding to it. Never, for one moment doubt that I don't know the battle that we fight every day, but don't look at my child and judge what you think you might know. Don't tell me that "we just don't know because we have never faced something like this before." You cannot be the head of disability services and not be willing to try and think outside of the box. I know first hand that education is based on the factory model of education where we are just trying to produce the mass model worker, but when we do that, we forget the individuals that sit in our classrooms--the individuals that we meet every day. And Ileana tells me to say that we continue to believe that people act with the best of intentions until they know how to better. We do and will always assume best of intent because that is how we live our lives. 

Our battle is against our own fears of her abilities/non-abilities and against society just as much as the enigmatic progressive degenerative disease that continues to attack her.

We have a college course schedule and an Id.     We have another leg of the marathon completed. 

Sacrificing versus Giving

Usually I write about being a parent and sometimes about being a teacher, this is more about being a person. 

When I talk about sacrificing, I am not taking about simply letting go or giving something up.  There is a higher thought to this giving, it involves letting go of something for the benefit of someone or something, knowing that the sacrifice will cost you.  Further it means that you give with an open heart and clear conscience. 

Giving means to give without expecting anything back.  Giving of yourself: your talents, love, pain, joy, and time is risky.   You are the most precious thing, not the stuff or the things.  

I have made many sacrifices willingly, knowing what they would cost. I give of myself willingly, often ignoring the pieces of myself I have given away.    Recently I have made many sacrifices. I have made changes in our family plans, routines, and goals.    The key here is that these adjustments were made with prayer and an honest heart.   Knowing we would give up a lot and had the possibility of losing relationships.   I believe that if you do things for the right reason things will work out in the end.   

  With that being said changing yourself to make people happy or to fit their needs or their expectations is not okay. This is especially important for me to remember that I am not the person I was yesterday and that I am more than the mistakes I have made.   I truly do strive to be better everyday. 

I am not who I was twenty, ten, or five years ago. I also do and will not hang on to past pains and wrong doings.   I let them go.  I forgive.   I say I am sorry and I mean it. Pain from the past is heavy and I have other things to carry.   There are many in my life who are killing their present by holding onto the past.   This makes growth impossible.  Your roots become tangled and you will become diseased. 

Some of what we have done aside from getting Libby through graduation, arranging surgery on both legs, doctor visit to Ft. Worth to adjust her battery charges, new Occupational and Physical therapy evaluations, visit with services at Libby's college of choice, got her class

schedule for this Fall, and next we have meetings with DARS for further testing has been to ensure that we have and will be able to do what is the best for our family.  And add in a five hour trip to the lake, some side yard swimming, a little zoo action in Ft. Worth, and a little sleep.   We have much more to come as I am trying to get a bunch of summer in before Libby is stuck in double leg casts.  Have I mentioned that there is a tendon release surgery available for her hands as well?   That is a very possibility in her near future as well. 

There are terrible things that people do when they are hurting.  I can say honestly that I am sorry for your pain, I apologize for any pain I've caused, punish myself, react with anger, offer and then give forgiveness and then try to thrive.   I cannot make myself smaller or to make others feel like they've punished us enough.   I have lives depending on me.  We have a beautiful life and love should be shared and multiplied.   We cannot control how others treat us, but we can control how we respond to others.   I willingly sacrifice to give as much as I can to those who need our love and help. 

Betweens

One of the things that is a bother is the between times.   The moments between doctors' calls, consults, research, appointments, and the waiting. The waiting for the return call, to get in to the room, for the doctor, for the information, for the insurance clearance, for the prep for the procedure, for them to take her away- the in betweens.  It is always these moments that are the heaviest to carry.  These moments when there is only waiting to be done.   Sometimes you have a bag of clothes and items that represent your child which you hold on to until whatever is done. Today we are sitting with the empty chair and waiting.  

Today, we know our waiting will come to a positive end and our daughter will return to us and her chair will be filled. Too many times and for so many others, the between times are terrifying steps toward the unknown.  But for us, on the day, we are having Botox throughout her upper body,under anesthesia, so it is not a long nor a scary wait.  But it is still a waiting. Then we wait for her to wake up and head for the actual doctor's visit.   Then we wait for the next referral to a surgeon who can do the similar surgery to Liberty's upcoming Achilles' tendon release, except this surgeon may save her hands from complete retraction. 

Instead of ever allowing the "what if's" to camp out in my heart, in between times I focus my heart on the many children and adults who I love and who may need special thoughts.   I let my mind wander to who has caused me pain or has been in pain themselves.   The past nine months have cost me several friendships and the loss of family members.  Not to mention the emptiness left from the many family deaths in the past year.   For these losses I pray in between for there to be peace and acceptance.

My belief is that those who hurt others are hurting.  Those who hurt- hurt.  To these I send my hope and prayers.   To these I send bits of joy and peace.   This lightens the waiting. 

I always carry thank you and bless you notes in my bag and it is interesting to whom I find myself writing.   Some notes don't get sent because they don't, but most do.   Because in between I have lots to be grateful for.  

In between, when worry, fear, and grief could creep in, I send out positivity and hope. I can't ask that my child be blessed if I am not blessing others. 

Moving on

We are still processing the fact that Miss Liberty did graduate.    It seems so unreal and sublime.  The moment she did her walk to get her diploma and then made it safely back to her chair I felt as if a million pounds had been lifted from me.  Her goals when she agreed to have the Deep Brain Stimulator's implanted were to dance at her senior prom and walk the stage. And heck yes she did both.   We had the amazing support of every senior at Caprock cheering her on every step of the way.   We also had the amazing support of the staff and administrators who totally get the belief that 100% means 100%. Every kid matters.   Could not be prouder of this astounding group of people! Grandma Linda, Jennifer, Xavier, and Jasmin,  Mariah and Tyson, Jeff, Thomas, and Kim Davis, and Beth Garza were at her graduation showing their never ending love and support. We would not be able to function without the endless strength and love from Rachael. So much has happened in the last five months that I didn't know if we would make it to graduation.   This post is about one of our battle fronts.

One of the forces we have been waging against is the contraction of the muscles in her legs and feet.  She has had AFO leg braces for four years and been getting Botox injections every three months for 18 months.  She has continued with therapy in school and walked as much as possible.  Still, her Achilles contracture has increased.    

The therapists through school did not want Libby in her AFO's because her muscles were pushing so hard against the form of the braces that she was getting skin breakdown and bruising. On April 15 we were told that Libby should not wear the braces unless we were transitioning between sitting positions:  from chair to potty to chair to car and so on.  A few surgical options were offered, but mostly Libby was to be sentenced to a wheelchair full time.  That was a week before her Prom. 

We broke the rules and she continued to work on walking with her braces and somewhat without.   Often her left foot is supinated to a point that she could walk on her ankle bone.  Her left foot also drags.  

She reached her goals and danced at her prom and walked the stage. 

http://youtu.be/-Uk2O5Gxd6g

"Wake me up"

I will not give up until every avenue has been scouted and every tried. 

We met with a local Bone and Joint Specialist, that was Senior Day, May 15,  who scheduled us to see the surgeon he works with. We met with the surgeon yesterday and Libby will be having Bi-lateral Achilles' tendon release surgery in a few weeks. This will happen here in Amarillo. This is a day surgery and will be relatively non-invasive. Except the little fact that I skipped right over.  

Libby

Will

Be 

Sporting a 

Calf 

Length 

Cast on

BOTH

Legs for up to 

SIX weeks. Yep.  Skipped right over how we are  to move her around since she shouldn't be involved in any weight bearing movements. Yep.  We are looking into how to transfer her safely and how that will work.  

Libby's only question was if she could have a different color cast for each leg. Mine was if I can still shower her if I keep the casts dry.   No thinking at all about how we would be getting her into and out of the shower- or anywhere.      

Logistics aside she will get some relief and hopefully we can keep her active and upright for as long as possible.  Today we began intake with a new therapy place and tomorrow we head to Ft. Worth to get her Botox and her battery charges adjusted.  

Please know we are immensely grateful for all of your cards, calls, texts, emails, thoughts, prayers, nods, and general kindness.  We are truly blessed and will begin "Operation Lift Libby" practice sessions soon. Funny videos to come...

Well, maybe we inadvertently already began our training.  Be blessed.  

Move onward toward college goals, art exhibits, and more life!!