Complicated: We are all weird cases here

We are all weird cases...

We’ve now had two failed attempts to get a feeding tube placed in Libby.   Each attempt is more invasive and hopes get higher. 

The first doctor  said her bowels were up high.  The second said that her stomach is up very high in her chest cavity, and so he could not proceed safely.  Wait.  What?  I couldn’t listen to anything else- just need my kid to be able to get more nutrients into her body.  Such a heart wrenching fiasco. At that moment the why wasn’t as important as when we can try again. 

Next is a true surgery.  Full anesthesia.  We asked for the full surgical process for the feeding tube in the beginning.  She’s terrible to get an iv into- tiny squirrelly veins.  She doesn’t relax enough to be laid totally flat unless she is under anesthesia.  Fully knocking her out is the way to go, but protocol  states that we go from least invasive forward. 

Of course, I always want to be cautious where her health is concerned, but I have a sense of urgency here.  

While we wait I’m trying to not lose patience.   Coming from the land of pediatric hospitals where we are all weird cases to learn that Liberty is “complicated.”  They said complicated.  

Yes. She is.  She is strong. A joy. A fighter. A hope, and some days a pain.  But she’s also still alive because specialists in the pediatric realm listened to our worries, ideas and, dare I say, our gut.    

So here we are holding in a pattern until we meet this surgeon next week.  Meanwhile, she’s losing more weight and eating less at every meal.  

I know she will be okay until we can get some nutrients into her through the tube.   We fought the idea of this procedure for so long that since we made the decision to get it I’ve become more and more impatient.   Every bite, every meal is a fight.   Her favorite foods.  Her favorite drinks.  Doesn’t matter. It’s a battle.  It’s not supposed to be this way.  

Truthfully, the combination of the Parkinson’s and dystonia will only progress making her less able to chew and swallow food.   These same conditions cause her to be so very spastic that she burns thousands of calories a day.  That my beloved friends is a bad recipe. 

I know there is so much that is out of my control.  I can’t stop her stiffness.  Her loss of motor control.  Her loss of speech. Can’t stop so many things, but have been able to make sure that she gets food she loves.   Now we’ve lost that.  The feeding tube will allow us to get the nutrients into her body and then supplement with whatever favorites she can get down.   

So, she’s complicated.   And a miracle.  We’ve come this far on our bonus time, and I will continue to refuse to lose her this way.  Not this way.  

As we approach Thanksgiving I pray we get the tube by the first week of December.    It will just happen or another solution we present itself.   I will not be without hope. I refuse to give up. It will happen. 

In shared determination we send out love and hope, 

Ileana 

Feed

We have made it through another busy and somewhat hectic October. I love fall and the changes it brings all around me, but the grueling pace we set at the beginning of a school year often becomes a prize fight during this month.  The sheer amount of wonderful opportunities we’ve had to be with loved ones, work towards our goals,  serve our community, and kick the booty of our never ending to-do lists is astounding.   And we did it. November welcomed us in a surprising way. 

For the last year Liberty has been steadily losing weight. We have altered her diet, moved to soft foods, increased the thickness and calories of her liquids, and chosen to pulverize every meal she gets.  The amount of calories we can get into her body is not enough.   Her spasticity and the dystonia storms cause her to burn through whatever calories we can get in.  

This  battle is waged against a jaw and throat that has been attacked by Parkinson’s.   I call it her Parkinson’s swallow; doctors call it dysphagia.  Libby can’t tell how much she’s chewed what’s been placed in her mouth.  She will chew air like a boss, and then swallow another piece with any chewing- luckily her food is all mush.  Each meal wears her out.  Then add to that her lack of desire to eat at all and you get a battle for every meal.  Every single meal is a fight.  It’s ugly. I’m not the mom I’m supposed to be during meals.    

Several of our docs have brought up the feeding tube over the past years, and I’ve discounted getting this invasive procedure as she was still eating.  Since August Libby is down around 15 pounds.   15 pounds that she didn’t have to lose.  She’s under 100.  To me, this is emergency level.   

I got her an appointment with the local doc, told him what we believe she needs and he did order the swallow study That was completed two weeks ago. Since then we’ve played some Olympic level phone tag with several doctors and got to meet a pain management doctor who is lovely. 

Thursday I received a confirmation call for Libby to have the gastric tube placed Friday, 11/2, at 6am.  We were there. Did all the stuff.  They took her back. Less than an hour later a new doc came back with mixed news.  

Libby’s bowels were inflamed and her liver was in the way.  Partially because of her somewhat contorted body due to dystonia.  Her back is shifted so then is her torso. The doctor suggested that we reschedule and do the same placement procedure with a CAT scan for guidance.  That means we lost a day as did our family members who were there on such short notice.   I would rather be safe, but was still saddened by the loss of opportunity to get the nutrients into her body.   I’m telling myself that this was a training run.  Just a little practice.  

So, we’ll schedule again.    Praying it will be soon.   

The irony here is that we feed people.  Lots of people.   It’s natural for me.  There’s a reason that I serve through Snack Shak, High Plains Food Bank, Snack Pak and Key Club’s efforts to honor the campus; I believe in the beauty that happens when food is shared.   Yes, while I’m feeding so many others, my Liberty is diminishing everyday.   It’s a sad irony.     Praying we can get into an operating space soon.   

Much love to all.

Ileana 

Winning at the Mom Game

1. Kid is dressed mostly appropriately.

2. Clothes are mostly clean.

3. Parent is also dressed mostly appropriately.  

4. Clothes are mostly clean. 

5. Kid is fed.

6. Stuff needed for outing is attached to kid or loaded into vehicle. 

7. Kid and parent left house at a mostly appropriate time.  

8. Stuff in house is rigged so that a little less chaos occurs upon re-entering.  

9. Food, meds, homework, projects of dire importance are competed and changes of clothing are loaded; signed folders, papers, affidavits are packed and ready for launch. 

High Fives and Hugs

    Recently we spent a chilly Saturday morning serving at our local Buddy Walk, which benefits people with and supporters of people with Down’s Syndrome.  This is one of my favorite groups to work for and support because there is palpable joy within their community.  

     There are games, bouncie houses, face painting, dancing, and local businesses there to bring a smile, advocate and share. 

     For the last few years the volunteers have lined up along the walk route to cheer and high five the families as they complete the walk.  There were at least a hundred volunteers lining up to chant, cheer, high five, and hug the families and participants.  

       This is the best part.  The most important part to me.   For me.   Every year it is the family and supporters of the wonderful people with Down’s Syndrome that I am captivated by.  

         This year I saw more new moms than ever in the family line up. Maybe I just haven’t noticed before.   There were several families with babies who have Down’s that passed amidst our cheers, and I noticed one mom crying as she passed.   Then another.   By the time the third family passed with a little blessing triumphant in the stroller I was bawling.   (I don’t cry very well.  I know it’s an issue- a dam that needs to hold.). 

      Ugly crying. I excused myself for a bit to get myself together.   I realized I needed to cry with them.   They have a beautiful and hard life ahead, and I somewhat understand the overwhelming fear.  Understand the joy.  Understand the desperation and need for answers to questions they don’t even know to ask yet.  

       I believe that at some point every parent needs to feel a community cheering them on, ripe with high fives, smiles, and hugs.   Many of us get overwhelmed and fearful.   More so those with children with needs beyond the normal.  

        In these beautiful moments, I realized that what so many of us need is some cheering on. Don’t be afraid to tell a parent, family member, caretaker, etc that they are doing amazing things.  Tell them that every minute of every day may feel like a test, or the final leg of a gauntlet, yet they’re getting through.  They’re doing it.  Tell them.   Cheer them on.    Don’t be stingy with the high fives and hugs. 

         We all need them.  

Embracing the Ugly

There  is “ugly” that every parent, or caretaker, has to deal with.   Ugly that demands attention and is pertinent to the life of our loved one.  Ugly that has to be heard, seen, researched, debated against, dolled up, dressed down, and finally dealt with.  

Can’t ignore this kind of ugly. Nor can you hide it or hide from it.  If I would have known how hard it would be to have Liberty cared for I would have started earlier. 

This part of the job of the parenting gig is not discussed as often because it isn’t easy, or fair, or joyous.   It is hard. And it sucks.   This week we went to an intake appointment with another government program.   Here is the issue: there is no place for Liberty to go during the day that is a professional care set up, aka Adult Daycare.   

Ick #1- I started making the calls and paperwork in April. There is one place and the waiting list is five years deep.   In order to get Libby’s name on the list we had to go through the appointment this week.    The appointment required a full history,  copies of our Power of Attorney ( they prefer Guardianship),  medical information, and intellectual/emotional testing.  

No parent wants to sit through an exam where it is stated, or you have to state, what your child cannot do. Or what she can no longer do.   Ugly.  In this scenario, Liberty has to be found to have an Intellectual or Devlopmental Disability, IDD, in order to be considered for the next level of programs.  The IDD has to have been diagnosed before the age of 18, so the progressive degenerative nature of her conditions are iffy.   She is a different person today than she was three years ago.   Her body is VASTLY different.

 The term used directly after the testing was “profound” disability. 

Ick #2- We live in the wrong county.  If approved, Liberty could be put on a waiting list for a place Plainview which is 45 miles south of our home.  We currently drive 40 miles north for my job.    We could move to change her address.  Or just change her address.  I asked about getting a waiver since we commute and that isn’t allowed.  

Ick #3- If approved Libby could be moved up the list if we would check her into a nursing home for 30-60 days continuous.    Uhm.   No.   

Ick #4- If approved it was suggested that I start considering a Group Home with other people with IDD.  

Ick #5- If I weren’t working she would qualify for a shorter lists for the Group Homes.  The struggle for me to hold tight to my career, my beloved teaching, gets more real every year.  

Ick #6- More cuts to health insurance for the chronically ill/ disabled are coming.  Liberty is covered by my insurance and disability insurance which is still not enough in this state.   I pray for those that only have disability. 

Profound underestanding for this mom is that there is a black hole of need in the Texas Panhandle for daycare for younger people with disabilities.  Don’t need fancy or shiny, just a safe and happy place for Libby to go to have fun and be safe until my teaching day is over.   

Here’s the kicker, there are funds that will pay for this kind of caretaking, through several programs.   But there is not enough places willing to open their doors to Libby and many others.    

Yes, I understand the difficulty that would come with taking care of many individuals like Liberty.  I get it.  We were reminded during our intake this week that many parents find it easier to stay home with their adult children with disabilities. Yep. That’ll wipe that ugliness off and make it all pretty again.  

Since Liberty’s illness struck I cannot count the amount of times someone suggested that I just stay home and retire from teaching.   Too many.   That would be easier for some families, but not for us.   If it becomes a medical necessity then it might be a consideration, but that is a heckuva long way down the road.   I will not wax poetic about my passion for teaching because I won’t demean the passion I have for being Libby’s advocate.  Nor will address the guilt and pure anger I feel when the easiest thing for everyone seems to be me not working.  Because there is this:

Liberty under her willow tree. 

Also enjoying a concert in the Amarillo Botanical Gardens. 

 

Please don’t think I am whining or complaining just putting the ugliness on display that I have encountered as I try to navigate the world of taking care of a Liberty.  Many of us struggle with various parenting/caretaking issues that cover everything from sassy talk to video games  to bad grades.  All are on the spectrum of trying to make sure the people we take care of have the best life possible.   

Would we be a closer society if we admitted that we are dealing with some ugliness in our caretaking world and sharing what we’re learning?  I believe so.  I believe that only through acknowledging what is ugly in my world have I learned to truly embrace the magnitude of the beauty.   And there is immense beauty.   So I’m sharing the ugly knowing that only time, research, and unicorn glittered blessings can guide us.  

My beautiful girls. 

It’s okay to not know what to say when someone shares the ugly they are  dealing with.   We all have our own.  

I’ll update as soon as more information comes in.   Blessings of hope, love, and light for you all.   

Ileana 

Continuity

Happy Summer!

I bring you summer greetings and gratitude for beautiful long days.  Before I get into all of the updates for Liberty and her medical needs I want to share the saga of these plants.  

It shouldn’t be any surprise that I like to grow stuff.  Every year I plant a lot of seeds and seedlings.    I plant many in hopes that some will grow.   This year I put some seeds in our old stock tank hoping they would pair well with my moon flowers.   Well, grow they have.  

One day in late May I noticed that the largest and most promising plant had a bend/crease in the stalk and was resting on the sister plants around it.  

For the last several weeks I have waited for the bent stalk to continue to weaken and wilt away.   The other sister plants around it would be withering as well from the strain.   The opposite has happened.  


All of the plants have grown tall and strong regardless of the weakened nature of the first flower.  The sister plants are boisterous in their following of the sun every day.   The first flower is about to burst with a flowering to offer us all. 

We are all like these flowers in varying stages of our lives.  Sometimes we are bent and have to rely on our friends and families.   Sometimes we are part of the support group.  Whichever part of the growth process we are currently on-we are all growing. 

Liberty had her regular does of Botox at the end of May.  We do not see the great results any more. The worst news from this appointment was that Libby had dropped a little more weight.  Her swallowing issues continue as the dystonia does its hateful work. 

 Two weeks ago we met an adult neurologist who is in Amarillo.  He is going to read her medical records and catch up to where we are in her care.  His practice does handle the baclofen pumps, but not the DBS, so he will look into where we will need to go.  He will not be replacing our beloved Dr. Hottie, but will be adding to our list of medical supporters.   In an important side note, the new doc loves Star Wars and was wearing a bow tie.  I hope he will be willing to take Libby on.     

We have a baclofen pump refil in July.   I cannot think of this  appointment as even a possibility to be our last visit to Cook Children’s.  I believe that the doctors and staff there saved Libby so many years ago, and have continued to save us along the way.    

There will be an appointment with a new adult disability agency in July.    I’m not even sure what all this group offers; I just know that I was told to see if Liberty is eligible.  

My gratitude grows as our strength grows. As we continue learning this new landscape that is the world of adult disability.  There are some real challenges in Liberty’s life that are beyond my control, and that’s okay.    I have no doubt that we will all continue to grow and support each other.    

Thank you my beloved friends.  

   Love and light,  ileana 

Onward.

Happy March!

The days seem to just roll on by.  Since Liberty’s art show and birthday celebration we have pushed through the weeks and made it past Spring Break.   

Gratefully some of the fruit of our efforts and the kindness of others have enhanced Libby’s life.  Using the proceeds from any art that was bought and a generous donation we were able to pay our portion in getting this transfer chair.   It will be a day chair when we’re home and allow us to transfer her straight into bed when needed.   

I am so very grateful to everyone who made Liberty’s birthday and art show a success.  Thank you.  

The chair is named the BEAST.   



Pretty swanky chair. 



Dyron Howell from Snack Pak 4 Kids bought one of Libby’s art pieces and  has hung it in the warehouse.  This organization is such a blessing and continues to make our lives better.  

Libby at her art show. 

The gorgeous cake Grandma Linda made. 

  We go to the urologist tomorrow for some not so kind tests to see about her urological status.    

Please know that each of you is a blessing as we continue to get through everyday with more smiles than frowns and sharing our joy where we can. 

Be blessed.  

Growing Pains

     When I was little I would wake up in the middle of the night with terrible leg cramps.  Jumping out of bed and hopping around- stretching until the pain subsided. It was years later that I learned that by keeping moving I made the growing pains release sooner.  In my world still have to keep moving even if there is a little pain involved. 

     We went to Cook Children’s for a refill on her Baclofen Pump. During the visit we were told that we would need to “find someone” to manage her pump and DBS now that she is “of age.”  Not what I wanted to hear. 

         I love this hospital- it’s doctors and staff.  It is here that we found so many answers and opportunities.  Our beloved doc, Dr. Hottie, has done the testing and questing for our girl for eight years.  It is my trust in him and this place that allowed for the placement of the deep brain stimulators and the baclofen pump.   I do realize that as she progresses we will need someone closer to where we live, and this switch won’t happen overnight.  I love this hospital, and it will hurt to not have the comfort we get there. 

Little One ready to deliver a painting to her doctor, and he wasn’t there.   

   

        Libby’s pump is pumping and her Deep Brain Stimulators are stimulating.  Her weight has been steady since December 8!  That is a huge blessing!  I was warned that as her conditions progress it will be harder and harder for her bionic interventions to make a discernible difference in her tone. I’d rather not know exactly how stiff and spastic she is without the muscle relaxer or the electronic impulses. Some relief is always better than no relief. 

         So, we will be stretching and moving through this transition to an adult neurologist.  Luckily, Libby has an appointment next week with her primary care physician for a complete check up.  It has been a shamefully long time since she has had all the blood work done, so I look forward to establishing a baseline. I will request the referrals needed and move through these growing pains.  

      Be blessed and know that you are loved and appreciated. 

ileana

**Following are pictures from the pump refil procedure. If you are needle shy don’t look.  

               

Birthday

    Tomorrow Liberty will be 21. In a different world I would have fulfilled my duty and finished raising both of my children.  In a different world Liberty’s body wouldn’t be fighting us at every turn.  In a different world I wouldn’t  have to pray everyday that the spark that keeps her her, stays lit.   I wouldn’t have missed the tick that triggered the decimation of her neurological systems.  Her body wouldn’t be fighting so hard against us. She would be whole, and I wouldn’t be a Forever Special Mommy. 

      But this is our world and she is turning 21.    The insurance companies have been calling and sending information since May that reminds me that she will be 21 and an adult. Reminding me that we have to have her adult medical coverage in place to roll it over before she becomes a legal adult.  I stopped counting the number of calls at 27.  That was in October.    Casually saying that many of her caretaking hours and various programs will be cut as she won’t need the same level of care once she’s an adult. Yep. They’ve obviously never dealt with constant incontinence  in an adult size body.  I am grateful that said insurance has been on top of her transition, and we believe we have the next few steps in place.  And many more appointments in the next month. 

      At her regular Botox in December we were reminded that as her body continues to stiffen and the spasticity worsens the Botox will have less and less effect.  My response is that any relief is still relief.   I have nothing but gratitude for any relief she can get.  She had dropped several more pounds.  This is a huge battle.  Getting calories in her as her body burns them constantly being so tight and spastic. Her muscles are constantly in flexion.  Constantly.  Even in a deep sleep.  That’s with the DBS, Botox, and the Baclofen pump.   Don’t want to see her without it. 

       Tomorrow she will be 21, and I am humbled. This day was not promised, none of them are, and it certainly wasn’t expected.  But I believed; many of us did.  I know Liberty’s journey has had a purpose. Some reason.  Some thing.   

       We are celebrating by fulfilling one of her dreams and showing her art work in a real gallery in a real art exhibit.  I am excited and pray she will love her Art Show.    We will have some finger foods and play her favorite music.   Hoping that so many of our loved ones will be able to make it. I believe it will be magical.   

     Happy birthday, Liberty Alaine.  May you continue to be a spark for all of us.