Docile and Compliant

 We have been blessed with several very lovely holiday get-togethers.   Libby loves to have her people with her.   She is such a rock star.  

Sharing some raw realness. I don't know if there is a step-by-step guide on how to do this.  Surely there is a section in the parental learning manual titled, "How to completely lose your shit while your child dies"  or, "How to gracefully let your child go."  These are my current steps in no order.  

1. Be angry.  Be very pissed. Tattoo guilt on your face. Ask all the whys. Wear righteous indignation like the emperor's cloak.

2. Try to handle the anger by doing online research and then regret it immediately.

3. Be envious of other parents who have healthy children.  Why is life so damn hard?

4. Also, be envious of those who have successfully raised their children and are empty nesters. 

5. Immediately feel guilty for #4.   Try on grace for a long moment. 

6. Doubt everything you've done as a daughter, mother, wife, friend, and human.  

7. Blame the illness on everything from the Purple Tella Tubby to Crop Circles to passing a curse on genetically. 

8. Try to race ahead of the typhoon of grief, make a list, and then feel like you're drowning; dream repeatedly of water.

9. Lose the list, or throw it away because you can't hold a thought in your head and suddenly realize it doesn't matter.

10.  Ask "How much time do we have?" Register the look from the Hospice Team and not ask again because who really knows.

11. Walk into three rooms and not remember why I went to any of them, or I'll Pick up an old toy and carry it around the house for no reason.  Did I start the load of laundry?   Try to give her juice again?  Are the bed room doors closed?

12. Get my shit together and try to work on school stuff.  

13.  Regret spending any time not focused on my child.   Remember to trust in faith.

14.  Escape from the caregiving because you cannot breathe and then regret not being there.  

15.  Look online for support groups, support articles, anything to remind you that you are not alone.  Anything that shows that other Mommas have survived this.  

16 Read articles about grief and anger and caregiver burnout.

17. Start another conversation about the future plans for your kid and swallow those words like you've been starving.  

18. Get more sad than angry.  Go silent.

19. Discover that you have worn your daughter's old bra all day and never noticed it- just felt vaguely uncomfortable.  Tell her about it and get a blesssed giggle.

20. Constantly look for any signs of the ugly insidious approach of her passing, and beat myself up when I think I have missed something.  

21.  Ask how I am supposed to survive this.  Is that the expectation?  Just need the rules.

22.  Try to hold on to faith and sunlight.  

23.  More rambling crap to incoherently follow...

Libby's body is moving through the stages as her body gets smaller and smaller. She still gives us giggles and some smiles, which I am ever grateful for.  She is spending more time staring blankly; I think she is listening to KT Oslin, Johnny Cash, and now Betty White.  

We have the Hospice bed now which is keeping her much more comfortable through the days in the front room.  I've been surrounding her with her pack of babies.  This gives me solace.

  I need to change Libby's name to Docile or Compliant.  She is refusing to eat or drink very much. I am a Southern Momma who wants to feed EVERYONE, but not this kid.  She is 100% Liberty.   She is not able to stand on stiffened spastic legs to help us transfer her from chair to bed and bed to chair.   Her legs are now not responding.   Still spastic, just not load-bearing.  The slow and steady decline is no party and isn't for the weak of heart.   But here we are.  As for now, she is still herself and I pray she knows how loved she is.  

Liberty and all of her beautiful stubbornness- “Broken Horses” https://music.apple.com/us/album/broken-horses/1577159552?i=1577159680 

Liberty turns 25 next week.   Trying to plan a celebration that won't wear her out and can keep everyone safe isn't easy. I do know that I'll be asking for small hygiene products for our Care Closet and/or monetary Snack Shak donations.  Will continue to give and serve as we can.   Grateful to be able to be ugly honest. Here is the announcement   We will ask for safe considerations of our girl.

Thank you for your thoughts and prayers.   

Ugly Tuesday

 I am not a fan of Tuesdays.  Just not a fan.  And I believe that Tuesday doesn't care for me either.  There is a karmic list somewhere that entails all of the ugly Tuesdays I've endured.  Sometimes it's a litany of little things.  Other days, it's one big thing that shifts my heart from a waltz to a mosh pit.  This week, the Tuesday shifted me from complacent and determined to sobbing on the phone to our Hospice social worker.  

I've been racing home every day because our gracious caretaker is staying past her predetermined time until I can get home.   Until Grandma Linda gets better, there's no one who can stay with Libby until I get home. Tuesday is usually shower day.   Showering Liberty is generally a time fraught with little dangers.  Because I have slipped a few times barefoot, I have special shoes for showering and Libby pooping; I call them my shower shoes. Just getting her into and out of the shower area is dangerous.  Keeping her safely on her shower chair is dangerous. Not getting her body dried off quickly and completely is dangerous.   Holding her on her potty chair so that we can change the dressing on her feeding tube, get deodorant, bra and t-shirt on is dangerous.  On alternating days, forcing a poop while on the potty chair is dangerous.  This involves a blessed suppository before we get into the shower- keep that in mind.  

This Tuesday was a double-up day: shower and potty. 

This Tuesday, Liberty was stiff- very stiff.  If she wasn't smelling so icky, I would have postponed the shower due to this stiffness.  (I do bed wipe-downs between showers.) We made it through the shower.  Got dried off.  Got her onto the potty.  Got her deo, bra, and shirt on.   ((Deep breath))   Went to cut the dressing and tape off of Libby's feeding tube and the whole damn tube popped out.   This happened simultaneously as Rachael was wheeling Grandma Linda into our house. 

I tried to push that tube back in.  I folded that little anchor balloon and tried to save the tube.  Keeping the feeding tube has been so important.  This is how we have been getting the liquid meds and tinctures into Libby.  This is how I have been getting more liquids into Libby.   This is how we have been able to give her the much-needed high caloric formulas.   

In my mind, I politely asked for Rachael to join us in the bathroom.  I was also calling our Hospice nurse who was in an intake and didn't answer.   I called the Hospice Social Worker which is when I broke down.  I knew that we would not be replacing this most vital tube.  It has been a lifesaver for us.   Some days Libby swallows liquids very well and other days she chokes.   That tube has been a blessing.  Now it is gone.  I ugly sobbed on the phone while trying to dress the quickly closing hole in her belly.  This whole time, Libby is looking at me so weirdly as she doesn't really know what is going on, except that she needs to poop NOW.   This dual-purpose bathroom visit is carefully timed.  Very carefully timed. 

By the time I got off the phone, it was DEFCON level three for Liberty's potty time.  So my shower shoes, old running shoes, became truly SHIT SHOES.     

Good thing we are washable.  R.I.P Tummy Tubaca

We made a few more calls and discussed for the next few hours and decided that we would not be replacing that tube.  I believe her body rejected that damn tube and spit it out.  Libby has been pulling and fussing with it.  Sometimes she has even grabbed at my hands while feeding her through it.   I pray we can continue to add additional calories without the tube.  So far, we've been doing good with the additional little feeds throughout the day.  

This Tuesday literally shit on me and metaphorically on Libby. Little laugh before we continue

Now on another battlefront, it is looking like Liberty's baclofen pump will be refilled next week.  Her pump refills have been every six months at Cook's Children's in Ft. Worth.  That may be too far for Libby to make it in a car.   Then I thought, okay, we can switch to pills.  It's a terrible transition from pump meds to pills. There is the element of the ugly detox as well: big difference between meds through your whole system than meds through your spinal fluid.  

Then there is the cost.  We have an appointment here in Amarillo on the 15th,  but the funding is an issue.  We are talking several thousand dollars.   It is magical what a call from our BELOVED Dr. Hottie, Dr. Acosta, and our Hospice Care team can cure. That is how we got the appointment on the 15th.  

Praying for this appointment to go through.  Wait, I almost forgot the kicker- her pump has an internal alarm.  This will start beeping on Wednesday. That's right, her belly will be beeping at us.  

I cannot express the amount of disparity in my emotions. These last few days of this semester are so important and I will be grateful when we finish this semester just as I have been blessed to get to school most days.    Hoping for the very best non-Tuesday days ahead.  

Whatever is going on, you are enough.

The Veil

I dream.  I don’t know that I’ve ever dreamt this much, or maybe I am just remembering them more. Or I just want to remember. 

 I’ve continued to sleep with Libby, probably as much for me as it is for her.  Some nights we sleep hard straight through.   Other nights she moves and kicks and fidgets all night long.  It’s like trying to sleep with someone break dancing; that’s an antiquated reference.  It’s taking more and more to knock us both out.

I had one lovely dream of Libby in her fragile little body of today, except her body is working.   She is dancing.  Now she has always been a waltz in a world of two-steppers.  She is dancing in her cowboy boots. She is dancing to a rhythm no one else could ever hear.  Happily stomping in her own way doing her “happy feet” moves that are completely her  own. 

She has this authentically perfect way of ignoring the rest of the world and just dancing.  The only thing in this dance is that she is confused.   She’s looking at me and asking “what’s happening?” More Liberty dancing then “Mom what’s changing?”  Then she was moving those fast little feet again, and I woke up talking nonsense out loud with wet cheeks. 

Three Saturdays ago , Libby giggled throughout the night. Seriously- giggling. The kind of happy, care free little girl giggling that is rare.  The kind of uncontrollable bubbly giggling that cannot be contained. She was giggling and then  would clearly say, “yea” several times.   She was even shaking the bed.  She giggled through the night and into mid-morning.   

I asked Libby what was so funny and she’d get quiet and go on sleeping.   She was sleep laughing. 

It was so random that it was both deliciously creepy and sweet. Luckily, Rachael heard it as well.   Later that evening, we were telling Grandma Linda about our “Giggler”.   I asked Libby what she was laughing at- more giggles.  Then I asked her WHO she was laughing at.   She got serious.  I went down the list of names: Sister, Jasmin, Xavier, Rachael, Betherty, Uncle David, and Jennifer,  to no response. I had a silly hunch, so I asked  if Grandpa Terry was telling her his corny jokes and she said “yes” in the most clear voice.   And she giggled some more.  

 

Don’t know about many things, nor do I understand many things, but I know the love we share in this life bridges to reach the other side. 

It makes my heart smile to think of Terry whispering his goofy “Dad” jokes to Libby. 

What a gift.  My friends this is hard, heart breaking shit, but she continues to bless us with glimpses across the veil.   Some days I feel as if I will suffocate from the weight of it.  Then she giggles or tries to reach out for me.   And I take a breath and keep going.   

Thank you for reading and supporting us.   We are blessed. 

The Next Best Choice

Happy Back to School and a new normal!

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

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

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

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

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

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

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

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

July 27, my mom passed on.

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

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

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

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

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

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

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

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

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

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

 You are important.  You have each blessed us.  

You are loved and are love: Look More Like Love  

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

Ubuntu

“Hello!  I love you.” 

Summer is a special gift every year.  This year I am especially grateful. Having more opportunities to be with my community is a blessing I have yearned for, plus time to be at home and revel in the rest. 

 I needed to share this with you all before I offer a Libby update.  Now, more than ever we need Ubuntu. I certainly need it.  I AM able to continue on because We are.   

Please play this song: 

“Crowded Table”

https://music.apple.com/us/album/crowded-table/1472976734?i=1472976739

Opening prayer/thoughts:

Our Loving God, 

You have taught us to love our neighbors as ourselves. Help us to do that within our church, familial, and neighborhood communities.  Help us to understand the struggles and problems our fellow people are going through and guide us to find ways to help them in the ways they need it most.  Help us to love others regardless of our differences- because of our differences. Help us to see one another as the divinely created and beloved spirits we are. Help each of us to help others grow and thrive as we wish to grow and thrive.  Help us to love our community as we love you.  Gratefully in your grace, we pray, Amen.  

Ted Talk Link:  https://www.ted.com/talks/boyd_varty_what_i_learned_from_nelson_mandela?utm_campaign=tedspread&utm_medium=referral&utm_source=tedcomshare 

Some days we are the matriarch and some days we’re Elvis.  Sometimes we maybe the crocodile hunting and other days we’re Sully. Having the support and strength of our extra family is vital. May you have the awareness of Ubuntu as you strengthen your community through serving and accepting of service. 

I am ever so grateful for our community.  

****

We’ve had some fun adventures including Libby and I took on grocery shopping and the Mall!  We’ve enjoyed the Wednesday evening gatherings at church and a scholarship race.  I think she’s enjoying the time at home and getting to go run around as well.   And all the movies we’re watching.  Yay for summer. 

(I am continuing to share our journey with Liberty and her illnesses. Please don’t be sad.” 

Libby has started some thing new: crying and fussing for hours every evening.  Every. Evening.  She cries. This is not a kid who cries very often until recently.  This is week four for the beginning of the cry hours around 6:00.  

I’ve rocked her in her little chair.  Sat with her perfectly still. Rocked her outside.  Played her favorite music. Held her in my lap.  Given her extra shower.  Rubbed her legs and feet. Etc. and she still cries.  

I took her to the local Clinic and we did full blood panel and urinalysis along with a abdominal Sonogram.  Nothing abnormal. 

We’re now trying a more stringent evening routine involving repetitive relaxing music.  Also added an additional relaxant to our nighttime routine.   So far, there is not a rhyme nor reason that I can find. 

I know we will figure it out.  Just hope I don’t lose my mind before then.  ;). Bless Rachael who is having to tag in a lot more when Libby is wailing.    I believe this is part of our learning curve and we will figure it out.  I know we don’t want Libby to be hurting or unhappy EVER.   Ever.  We choose quality for her life at all times.  I have faith that we will find the magic whatever to make her return to comfort and happiness.  

My mom has been in ICU in Garland for five days.  She is on a ventilator. There are multiple systems not working proficiently.  Her body is trying in her own way.   Prayers and good vibes appreciated.  Prayers for my brother, David and his beautiful wife, Mirtha.

--Closing Blessing:

Our loving teacher, 

Crowd our tables and guide us as we welcome more in.  

Show us how to see one another as the vitally important pieces in our community we are.  Protect us from anything that could slow our growth as a community.  Allow us to be uplifted as we grow and strengthened through good works in your name.  When we are weary may we be sustained by the faith surrounding us. Remind us that I CAN because WE Can.  Remind us that we ARE because You ARE.   We ARE because I am.  Help us to love our community as we love you.  In your grace, we pray, Amen.

God’s Participation Medal

We make plans and God laughs.  Belly laughs.  Please

Don’t take this to be sad; we are learning and growing as we go.  I am always grateful to be able to mother and teach.  Always.  

The Intro:

We finished. We finished the school year.  We crafted beautiful relationships with our students and peers.  We navigated teaching with a mask, cleaning between every class, virtual learning, changes in state tests, taking state and national tests, many, many students and staff being quarantined, and a move across campus to a new classroom. 

We finished and I am  a worn out dish rag during canning season.  We finished and yet so much is still unknown. Living in the unknown is okay.    

Everyday seems to bring new challenges and new lessons.  I learned that working on the relationships with my students and peers is the most precious part of my job.  I also learned that all of the Pine Sol and Fabuloso was worth it.  I don’t feel like I was half the teacher I normally am this year, yet I pray my students felt safe, loved, and heard.  They’re going to be okay. 

Finger Update:

Libby’s finger is still healing from her venture into cannibalism (I know, that’s not appropriate, but funny).  She’s wearing the Mit of Shame everyday to protect her left hand.  

That giant white pillowy thing is her Mit.  It’s not perfect, but it’s working.  Her hand is  going to be okay. 

Van Update: 

My lovely Toyota van has been totaled.  I signed the release papers Wednesday, cleaned it out, and said farewell.   The front end damage was too extensive for insurance to fix.  So, it is gone.  It’s going to be okay, not the van, but we will be okay. 

Libby’s rotating seat lift is also totaled.  I cannot move the seat with her into a new vehicle for safety reasons- even though the seat itself wasn’t harmed.    It’s been in a wreck.   That’s a huge loss and getting it replaced is close to $10,000.   All the insurance companies involved are not sure they will pay for the replacement.   It’s going to be okay.  

There is also a deficit of appropriate vehicles for us to buy.   Finding a van or SUV that can accommodate Liberty’s very specific needs is difficult.  She needs a door that will open very wide or is a slide in.  Her body doesn’t always bend and  her legs may not fold while getting in the vehicle.   (I’ve been doing a modified version of the “Cop Dip” to get her upper half into our rental which does work, but it’s hard on her body and hurts.)   

The rental goes back tomorrow after over three weeks.  It’s going to be okay.  

I struggle with letting go and letting God be in control. Often,  I think I have a plan.   A big Plan. I’ve gone through all the what if’s and possible road blocks.  I like to think through the ifs and buts and oh no’s of any change.  I create a  plan and begin to believe in how it will work. I made a plan.   I had a plan and God laughed.  A career changing plan. 

I prayed since last year to be ready to leave the classroom and move up into curriculum work and leadership.  I prayed to make me feel ready.   I prayed to be ready for challenges.  After 18 years teaching, I was ready.  I submitted the necessary paperwork and was in the race,  but it didn’t happen.   

I was passed over.  Not hired.  Not enough. Just not.  

And God laughed- gently. I don’t carry fear around as my faith allows me to let that go.   But the bitterness and hurt I gained after the rejection, has been a Military size ruck sack through my days.   All of the insecure doubts were dangerous hitchhikers to my  daily life. 

What could I do better? 

What am I not doing?

What do I need to learn and change?  

What did the other person do  better than what I do?

Why not me?

Passed over. 

Not chosen. 

Not enough.  

Finally, I went back into prayer as bitterness is a poison.  After a timely conversation with two amazing educators who are also people of faith, I was able to find some perspective. 

I don’t think we’re supposed to try to make these big plans without taking our ideas to our God.    I wanted a change and move up.  I wanted a break from teaching because I am tired.    I wanted a new challenge.  I wanted. 

God has plans for me.  There are other races I’m supposed to be in.  This was my third attempt to move out of the classroom.  Don’t think that’s the plan.  I’ve come to peace with it for now.   I learned more about myself and how I lead through action and not words.  No matter, I am blessed to teach and serve students through my current position and I know great things are coming every day.  

And I have the swanky participation medal from my Higher Power.   We make plans and God just laughs as they have plan in place for us that we can’t see.   So we put our name in the race that we want to win in and God gives us the participation medal to acknowledge our growth, not our follies.  Winning isn’t about the big medal; it’s about the growing in between.   I’ll take this lesson and carry on, placing this new trophy in my shelf.  God laughs.  We make plans, and we GROW.

https://music.apple.com/us/album/masterpiece/1174317441?i=1174318362

Be blessed and know that you are a masterpiece; a single piece made from a Master. 

WARNING! Construction Work Ahead

      It’s the end of a beautifully stressful school year where we’ve been in-person teaching the entire time.   We’ve worn our masks, cleaned the tables, and had books in a waiting area between students sharing with other students. All to keep our students safe.  Knowing that I would be going from our school to pick up Libby has meant being very careful by using sanitizer, masks, and limited what I take home and what comes from the house to my classroom.  All to keep Libby safe. We’ve changed so much of our pedagogy and class space in an effort to keep all of our students and family members safe. This entire year has been a blind growth curve in the middle of an acid rain storm while wearing a mask and wielding a spray bottle of Pine Sol like a sword. 

And we have survived and dare I say, thrived.  

Last week  I shared about Libby’s biting prowess and the huge teeth marks and infection she gained. Here is the catch up time line: 

Monday-5/4- Libby bit her right index finger so hard her whole hand swelled up.  

5/5- Her finger and hand are swollen and red. We saw a doctor and began antibiotics.  

5/6- Her finger and hand are slightly better- We celebrated Cinco de Mayo and saw friends at church. 

5/7- Finger and had are worse. Red, inflamed, and puss filled.  Back to doc for more antibiotics. 

5/8- Red and angry infection in finger, but finger is better. 

##Pictures of the finger at the very end of this post to protect those who are squeamish. 

And then...

That Friday morning we were in a wreck.  It was an almost normal Friday as I had many water jugs to be filled and extra cleaning stuff for my classroom. My school bag, lunch bag and Liberty’s go bag we’re loaded as well. 

A lady, my new friend, ran a stop sign and hit us. This very sweet and apologetic woman was so upset about the fender bender with our van; even more so after she saw Libby in the van. 

  

Libby was with me, and we got into a wreck. 

I couldn’t open my door or the windows.  Libby didn’t move at all. 

Libby. Was. With. Me. There were water jugs and parts of our food, her pill container, and daily supplies were everywhere. 

 Libby was with me. She was with me in her chair lift seat with her harness and seatbelt on. She was also propped up on her Star Wars pillows as normal, plus an extra one for her very iced and wrapped left hand.  

After the collision,  on Liberty’s chair move at all.  Her pillow was in place.  Her hand was exactly where I had propped it up. Everything else was in the back under the wheelchair, under seats, across the front passers seat.  Stuff was everywhere, but nothing in Liberty’s seat had moved.  

When I finally crawled across to get out and check on her, she smiled a little and that was it.   No surprise, fear, or painful upset to be shared. Apraxia is a gift at this moment.  I did a body check and she was okay.   She was okay.  And I had hard waves of sobbing.   Ugly crying.  She.Is.Okay. 

https://youtu.be/8-vZlrBYLSU truly a “Broken Road”....

While we exchanged insurance and informed the police officer what happened, the wonderful officer gave me some salient advice. I need to get something on Libby’s chair or body that states that she is nonverbal, full assist, and has her medical information.  Her words echoed, “If you had been incapacitated, how would we know that she cannot respond, stand, or move on her own?”  

Well shit.  Sirens were going off in my head.  If something happens to me, first responders HAVE to know the hardware in her body and how to help her.  Shit.  

Humbled and scared. I am often humbled, but not often scared.  I place my fear at the feet of my faith, so real fear doesn’t stay with me long.   But I was scared.   If I had not swerved the other car would have hit straight into the driver’s side door.   It could have been much worse.  This could have been a “road ends” sign, instead it was “construction ahead” and “slow down”. 

Grateful that Jennifer and Caebhin for coming to get Libby.  

Thankful that the Tow truck driver gave me a lift. Ever so grateful that Rachael was able to leave school and meet me at the Collision Body Shop and let me son. 

 The last two weeks have been a treacherous drive on a rocky dirt road, with lots of construction work going on.   I was still reeling from this new road where Liberty biting her finger is a truly dangerous possibility. I didn’t realize we were emotionally in the middle of of construction zone.  Growth and understanding take work, so I better get a hard hat to match Libby’s protective hand  mitt.  That’s where I’m at as I admit that it is truly “a dangerous business...going out [my] front door” (The Hobbit.)   Dangerous it is. 

We were blessed- not lucky.   Blessed.  And I am humbled and grateful. 

Some links for getting the necessary information on the seat belt, wheel chair, or even wrist of your loved one.  

https://www.etsy.com/market/medical_seat_belt

Or 

https://www.pinterest.com/pin/808536939351404664/?amp_client_id=OErbAo5bLoS7Xa7mI1L8_DzVhKpxWLgvUIlmdkLgzprvjJbJD4-_No1LtZLraF8r&mweb_unauth_id=e1f47491&amp_url=https%3A%2F%2Fwww.pinterest.com%2Famp%2Fpin%2F261560690837469408%2F&amp_analytics=1*mqqc19*cid*T0VyYkFvNWJMb1M3WGE3bUkxTDhfRHpWaEtweFdMZ3ZVSWxtZGtMZ3pwcnZqSmJKRDQtX05vMUx0WkxyYUY4cg..

For a tough and wearable bracelet id: https://www.roadid.com/products/limited-edition-elite-cobalt

And 

https://www.stickyj.com/product/sport-strap-medical-alert-bracelets-for-kids-adults-aa2193c?child=aa1234&source=googleps&gclid=CjwKCAjwnPOEBhA0EiwA609ReYvyc0X6UAGqo5zpN1gyaUgCq04A2kPrzIpWOG6QvQqEY-RIByamBRoCoVkQAvD_BwE

Bling bling bracelets: https://www.laurenshope.com/medical-id-bracelets/beaded

Gird your loins if your squeamish...

Day 3 after bite.

Day 8 her very soft “cone of shame” came in.  She’s ready for some lightweight boxing now. 

Day 10 that bruising is real!  

Libby’s finger continues to heal.   It’s coming along slowly, but steadily coming along.   The van is at the repair shop and we have a cute little rental.   And we’re okay.  We are okay, and the road work continues all around us.  

Be safe and be blessed.   

Ileana 

Rough Road

Happy Tuesday,

We now live on a world where Liberty can accidentally bite herself hard enough to break skin and cause her entire hand to swell.  This is not the road I would have ever chosen, but it’s the one we’re on.  

The last 24 hours have been rough.  Liberty has bitten her finger so severely that I had to get her checked for a break.  

Yesterday afternoon I got a call while I was in class that Libby was okay, but had gone through a Spastic fit and bitten her finger hard enough to break the skin. Poor Derrick and Mariah for dealing with this scary drama.  (She has bitten herself before as her left hand, index finger, stay very close to her mouth. She has not broken the skin so much, not caused her entire hand and wrist to swell due to the bite trauma.) She has also bitten plastic spoons, straws, and forks in half.  We don’t use plastics any more.)

She had an ugly shower and potty last night and cried through most of the night.  I wrapped and iced her hand.  She spazzed and bit her finger again around 11:00.  I slept with her using my arms as a defensive shield lest she bit herself again.  

Took her to our clinic doctor in Canyon early this morning. Getting X-rays are difficult.  Went through two sets of attempts before we could get a decent shot.  With the spasticity and the gnarly nature of her fingers, it’s hard to see a possible break. Getting her body into the needed position was a challenging yoga class into itself.  It’s easier for us to move and conform that it is to try to get Libby’s body to do so. The Radiologist doesn’t believe she has any breaks.  Thank goodness. 

We left the clinic to get the script for antibiotics as bites of all types are dangerous magnets for infection.  Love our little Canyon clinic.  We did come home with a finger brace which she managed to get off of her finger before we made it home.   

I did ask the Nurse Practitioner for a Liberty size “cone of shame”.  Apparently that’s not appropriate, but it was funny. 

So, here we are.  We lost the day as I couldn’t leave her to go to school this afternoon.  Didn’t help that I ugly cried in front of the nurses and the NP.  This opened a new set of worries for Libby’s health.  

What a crazy day in a life where Liberty has taken me to many crazy days.   We made it home around noon and she napped.  I dozed in between checking on her with her hand wrapped up and iced as if she were a boxer coming out of the ring. 

So, that’s the day in a life with Liberty.  I can curl up and cry or I can admit what an incredibly rough road we’ve been on and understand that all of us are on our rocky road.   

Sometimes I go down an emotional path where I believe God is punishing me or that I’ve done something so terribly wrong that Liberty’s body has gone through so much because of me.  I don’t believe that is how God works. Her physical struggles are not my punishment.  They are just part of journey. 

We’ve all got detours and construction areas that others may not even know about.  The paths we walk are not easy, but they are ours to learn from and grow through.   

But seriously she bit her finger so incredibly hard.   That detour wasn’t  on the map at all! Not sure how this will change our daily care of Liberty, but we will learn our way through it.  No other way but through.  

  Pray for and embrace the people around you.  Pray for and embrace the rocky road your on. Pray for and be embraced by the others around you.   

https://youtu.be/66DdsXfituQ

This life is so unbelievable at times that we really and truly need each other.   And maybe we all need spiritual hard hats to reach our destination safely. 

Gum on my shoe

The last few weeks have been busy, draining, and yet good. Coming back from Spring Break at full speed is a race to the finish.  Libby, Rachael and I have our schedules and we are rocking and rolling through the days. This time of year We generally hit our stride.  

This week I felt an unexpected guest joining me- sadness. Parenting a Special Needs Adult is beautiful  and hard. I had a blessing filled opportunity to share the timeline and progression of Liberty’s illness on Monday.  It was a bright light reminder of how far we’ve come and how much we’ve lost. Then we had our bi-annual visit with her disability insurance nurse. I was able to say several things out loud that I had only whispered in my prayers regarding the progression of Liberty’s illnesses. On Friday, Good Friday, Liberty got a new feeding tube. 

Liberty is resilient and her emotions are generally ambiguous unless she is very happy or very sad.  It may take several minutes for her feelings to reach her face or body.  She was only physically a part of the feeding tube replacement. The other appointments I was her representative- her voice. I only tell you that because I think I absorb the emotions she isn’t able to process or express. 

I don’t have a place any of these emotions: mine or hers.  So it was Wednesday before I realized that my emotional feet felt like they were stuck to the floor. Like I had to walked  through gum on a hot day. 

Sadness tends to sneak in and take place without invitation. It is sticky and gross.  The more you mess with it, the stickier it gets.  When it’s hot that gum is icky and when it’s cold it is a rock bruising you with every step.  To me, that is sadness.

Please take this entry as my own observation and growth.   I am not whining as I know I am blessed. Beyond blessed. 

It was during my Small Group meeting with church friends on Wednesday that I actually saw the metaphorical gum on my shoe.  Sadness had attached itself to me and I hadn’t dealt with it.   I’m not good at this.  Not good to say, “I’m sad.” And then say, “this is why”.  I don’t do that, but I need to.  I think my constant drive to be positive is suffocating  my natural response to recognize when I’m sad and work through it.  Then clean that damn gum off of my shoe and move forward.  https://images.app.goo.gl/2H2g4uvG4reJcZLVA

sticky shoe

So here it is: I have a sadness that I will not allow to extinguish my joy.   I have lost the Liberty we started with.  I miss her. I miss hearing her voice singing. And climbing. And being adventurous Liberty. Parts of her are still in there, but many of her attributes have been destroyed by her encephalitis. The care for her now is relentless and for that I am grateful. I love this Liberty and will continue to do all for her.   She gives me joy everyday and that is not diminished when I say I’m sad because sometimes we get gum stuck on our shoes.  

Also need to acknowledge the difference between sadness and depression.   Here is a link to help explain: Medical News.

I know there is a wealth of support around me. 

I know I’m not alone. We are all walking through minefields of gum.  

I know my God will help me get that gum off of my shoe. 

I know my meditation and yoga practice is helping, since I cannot out run the sadness. 

I know that even on the darkest of days, Easter is always coming. 

I just have to acknowledge it’s there so I don’t track into too many other places.  

-**Grateful to be able to work through it and let that sadness move on through.  All is well on this blessed Easter Day.   

Be blessed and be well,

You are loved. 

Liberty is 24

       A reboot of a mostly complete history of Liberty’s medical conditions.   What’s been left out is the laughing and joy with splashes of gnashing and wailing along with misplaced guilt and hope. 

        2007-Liberty was normal and healthy through the age of nine. At this age, she had three seizures starting that summer and ending within that year.  The first one was the night after we arrived home from a family camping trip to Southern Utah.  

        2007-2009 lots of tests in Amarillo, and then Lubbock, to verify and find the cause of these seizures.   They simply went away as many undiagnosed seizure disorders do in preadolescents. 

         Life rolled on ebbing and flowing through her upper elementary years.

        2011- In the spring we noticed Libby’s handwriting getting harder and harder to read.  We also noticed that her speech was changing.   We assumed that she was lacking confidence as her world was changing; the loss of her grandfather and her sister getting ready to graduate. 

          We got her into voice lessons and really started paying closer attention to our little one.  

        2011- In the fall she passed her physical fitness test and her yearly physical.   She started her menstrual cycle. Life started our great.  

          She starting stumbling and falling.    Was sneaking the bendy straws and spoons with her lunch.  Her handwriting was mostly illegible, and her grades were low.  Her locker and backpack were a complete mess.   We requested testing for learning disabilities thinking that those seizures could have messed up her wiring.   Or something else.   

           October 2, the diagnostician called on my way home. She had completed the testing and told me that she believed there was something medically wrong.  We were encouraged to take Libby to a doctor.    We did just that.  

             Libby collapsed walking home from school.   Neighbors witnessed the fall; her legs quit working.  Fastest drive from Caprock to Happy ever.  

             We went from a family doctor to NWTH, to Lubbock Children’s for lots of testing and no answers.   The Lubbock doctor said he didn’t know what was happening, but it was severe.  Libby’s motor skills were degenerating as if she had a traumatic brain injury.  We were referred to Cook Children’s in Ft. Worth.  

              Libby was no longer feeding or bathing herself.  We were helping her dress.  She couldn’t be left sitting alone.  

             November- first visit and the first round of doctors scheduled a few basic tests and scheduled us to return in a week.   We did.  We drove home and decorated our house for Christmas.    I didn’t want to return home and not have that tradition glowingly greeting us.   

               Libby was checked into the hospital and there we stayed for ten days.  A few things they tested for were: MS, ALS, HIV, cancers, Huntington’s, Wilson’s, Cerebral Palsy, and Muscular Dystrophy.  Tests done included lots of blood work, scans, lumbar punctures, and a liver biopsy.  

             Libby continued to lose more and more of her faculties.   We were released with no answers about what was happening, but lots of info about what she didn’t have.  The doctor told us to get her baptized and prepare our family as they didn’t know what was happening.  

            We drove home on Thanksgiving Day and shared chicken nuggets from Allsups.  

         We tried to keep her happy, but she is a little wolf girl in captivity.   She does not flourish in the hospitals. 

             One test was completed in Amarillo on order from our new doctor: eye scans. It was the eye doctor who also tested for Cat Scratch Fever, Rocky Mountain Spotted Fever, and Lyme.   The Lyme came back positive. That is and remains the only positive test result we have ever received.   There was never a bulls-eye rash, nor any flu symptoms. 

 

           2021- January finds us celebrating our little one. She now has the neurological and muscular diagnoses of secondary Parkinson’s, Bladder sphincter dyssynergia, 

dystonia, spasticity, ataxia,  speech apraxia, and currently wasting.   

 

            She has been on a five pill-a-day schedule for years; her main one is the Parkinson’s drug.    She has a baclofen pump, as of last Thanksgiving.   And Deep Brain Stimulator which we charge every other day.   

           As of Thanksgiving 2019, she has a gastric feeding tube to combat her wasting.  She can swallow some very soft foods, but chewing solid or crunchy foods, along with soupy foods doesn’t do well. Because of her spasticity and dystonia, she is burning many more calories than we can get into her by mouth, so we use the feeding tube several times a day.  Her weight had been steady for almost a year. 

            We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water.  At our doctor’s suggestion, we gave up on the Botox injections.  She was getting such high doses without any discernible relief.  Libby’s body continues to stiffen and struggle.  

          We now know that her conditions are all progressive and degenerative.  Our biggest fights are wasting and spasticity.  Her ability to say full words has dissipated.  She can sometimes say one-syllable words like “hi” or “no,” or vocalize the beginning of words.  

            Yet, our songbird continues to hum along and somewhat sing to so many songs.  Most of the time, she can squeal, laugh, and fuss.  Grateful to have some communication with her. 

           Nothing is promised.   Sometimes bad things happen for no reason.   Every day we are blessed.   This is our bonus time with her and ourselves.   One day we may know exactly when she got the bite or where, but I doubt it.  I won’t hang my hat on that kind of answer.   Instead, I will focus on how well I’ve taken care of her and how happy she is.    

             Be blessed and realize your blessings.   Love you all. 

            

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 

Just like that

We’ve finished another year of teaching.   It’s amazing how long the days are and how fast the weeks go by.   Each year I think I cannot ever love a group of students as much as I’ve loved this one. No possible way.    Then I find that I can love  more.   I struggled so much this year with my own defeats that I wasn’t sure that I had made the relationships with my kiddos that I have in the past.   I was wrong.  It is a gift to have so many young adults care for you.    A true gift.  That’s part of what we cling to during the darker days of the school year.  

   I view the glory of the end of this year with tinted lenses. Several of the students that Libby went through school with have graduated from college. This really hit me yesterday, last day of school,  as I went to give Libby her 6am feeding and start getting her dressed.   Her feeding tube was out- again.   Last day of school when grades are due and mandatory check out procedures have to be completed.   That didn’t matter as much as desperately trying to coax the tube back into her belly to avoid the trip to the ER.  

    Called  our head  secretary Becky, who is amazing, and told her the funny news that we’re heading to the ER instead of school. Not funny, but you gotta laugh. 

 The attending doctor couldn’t get a feeding tube back in as the track was already closing up.  So off to radiology we go. Luckily Liberty feels pressure around her tube, but not pain. So grateful for that.  I had to look away several times as they had to stretch out the tract to get the new tube in.  Brutal.  

      I would give everything I have to take even a part of her conditions away.    If only it worked that way.   

      Don’t know how many more times I’ll be willing to put Liberty  through procedures like this.   The feeding tube is keeping her weight steady for the most part, but she still loses a little weight at every check in. It is necessary to help her get the additional nutrients she needs.  

     

Here’s the epiphany: while her peers are getting married, having babies, or graduating college Libby got a new feeding tube.  Could spend a lot of time being sad.   Instead, I have to acknowledge that and move on.   I have nothing but happiness and love for her peers.  Hope for where they are going and their our journeys. For us, this isn’t the life we dreamt of for her.  No parent would wish for this.  Not the life she asked for either. But it’s the life we have.   We are grateful for the days with her even the hard ones.   We are all changed by Liberty and her conditions.  All of us.  Our goals and priorities are different.   Everything is different. And that’s okay.   

   It’s okay. Sometimes it’s heartbreaking and sometimes it’s heart-taking, but this life remains beautiful.  And better than I could’ve imagined.  

The Escape of Tubi Wan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love to all.