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 

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