Tuesday, August 14, 2018

Summer of 2018: The Untold Story Part 3

As Mama Hop reclined in her hospital bed, watching the illuminated sky bursting with 4th of July fireworks, she knew what the next day would bring: an amputation of her left leg, below the knee.  The whole summer seems like such a blur of uncertainty, stress, pain, and misery.  Who would have thought that undergoing an amputation would put it all to an end?  Mama Hop emerged from surgery with a new lease on life; her pain was over.  She was ready to move forward.
Recovery from surgery flew by with physicians coming in every day to examine and compliment her "beautiful stump" (I can't make this stuff up.  Of all of the lovely features that woman possesses, no one could see past the marvel of a stump she donned).
With lots of love, attention, and handmade cards, Mama Hop quickly graduated to rehabilitation - and not just any rehabilitation - the vigorous inpatient rehab that required up to six therapy sessions per day!
This beauty was up for the challenge!

 Now, I've known Mama Hop my whole life (she is my mom, after all) and she even amazed me with her unwavering positivity and work ethic.  
 For two weeks, she spent her days learning how to navigate the world with her newly adapted physique (somehow, calling it a 'disability' just doesn't seem to fit considering Mama Hop's optimistic attitude).  Heck, she even climbed that tree!  Just kidding - that was kind of an inside joke during her stay.
Mama Hop's soaring spirits and commitment to success was so endearing to the staff that nurses brought her flowers, baked goods, and fine chocolates.  Between that and downright mind-boggling supply of gorgeous doctors feeling up her stump (it really felt like we were on the set of Grey's Anatomy with the beauty and brains they staffed that place with), it was difficult to leave.
But, all good things must come to an end so we packed up and got Mama Hop settled in her new residence.  Those that have followed on social media know that Mama Hop and I have a long-running "Shady Pines" (Golden Girls reference) joke.  So when I was tasked with finding her a retirement community that could accommodate her new wheels, I did a little research and settled on this joint.  It's okay I guess...as long as you don't mind waterfalls, lovely landscaping, fine dining, five-star resort accommodations, and the friendliest neighbors around.
And the most important thing by far:  it's pet friendly!  Special thanks to Mama Hop's neighbors who took care of her two Siamese cats while she was getting back on her feet...eh...recovering (hey, if you can't joke about it, what fun is that?) and to Travis who traveled the great distance to pick the cats up and transport them back here.  So Mama Hop has a wheel-in shower with a seat and her two favorite felines to snuggle up to and frequent visits with the grandbabies; what more could you want?
 Here's where it gets funny...Mama Hop hadn't been in her new community one week when there came a knock at her door from the director of her residence and the director of marketing, asking her to please be available to partake in the photo shoot for their new marketing materials.  That's right, Folks:  you're looking at the new face of retirement!  That's my mom, senior supermodel extraordinaire! 
 As soon as those brochures hit the market, the phone will be ringing off the hook with eligible senior bachelors trying to reserve their unit, right next to Mama Hop's!  We laughed about that for days and days...She is, indeed, a beautiful lady both inside and out.
And even though Mama Hop has everything she could possibly need in her new community, we still bust her out every now and then so she can remember how the rest of us peons live.  Remember this place, Mama Hop?  It's called Target.  It's for those of us who don't have a concierge to call.  LOL!
 Mama Hop did insist on leaving the community to get beautified.
 She was even able to join us while this little wonder got her ears beautified.
 It took some convincing but Dad finally gave Merryn his blessing to get her ears pierced in honor of her seventh birthday.  Mama Hop joined us for this monumental occasion.
 We are hopeful that Mama Hop will get fitted for a prosthetic soon so that she can amp up her activity level even more.  She's already practicing getting in and out of the Mama Hopmobile with her wheelchair and walker.  She can't wait to drive again while blaring the Sirius XM "Watercolors" radio station.
There will come a time in all of our lives where we experience illness, injury, and limitations either personally, or with a loved one.  Mama Hop certainly serves as an inspiration for how to embrace adversity with determination, grace, and humor.  Regardless of what storms lie ahead, Mama Hop is determined to "keep the faith," and that, right there, is her secret.  It always has been (I'm going to convince her to write a book because her life story is fascinating).  

We'd like to extend our heartfelt gratitude to all of the wonderful people who kept Mama Hop in their thoughts and prayers.  Your messages of support have been so encouraging.


Wednesday, August 8, 2018

Summer of 2018: The Untold Story Part 2

There I was, 350 miles away from home where my mom was hospitalized for a second surgery, while my sister was hospitalized with facial cellulitis - an infection that can cause vision loss and even death if left untreated.  Thankfully, Travis' parents were able to stay with the girls so Travis could visit Leanne at the hospital morning and night.  God bless all of them for acting quickly and working together to ensure that everyone received lots of love and care.

And to everyone who has commended me for holding up so well this summer, I could not have done it without my incredible support system.  But I've had my moments - trust me.  Nothing can break a Type-A,neurotic, control freak like the feeling helplessness that comes with having two of your loved ones very ill.
However, the reoccurring theme that persists throughout all of the trials that we encountered is the triumph of the human spirit and the beauty that shines in times of darkness.  While caring for my mom prevented me from being present during Leanne's hospitalization, she was surrounded by visitors - friends and neighbors who showered her with magazines, puzzle books, and lots of Frappucinos.  What wonderful, caring people - these gestures meant the world to us.  
Leanne was so loved and catered to by hospital staff that she told Travis that she didn't want to come home.  She enjoyed the attention and "room service" with an unlimited menu to choose from.  Ha!  Cheeseburgers and chocolate cake at the push of a call button!  One CNA was so crazy about Leanne that she hugged her and cried when it was time for Leanne to leave.  But in just less than a week, Leanne was well enough to return home (where her mean sister immediately returned her to a healthy meal plan).
Meanwhile, Mama Hop's hospitalization wasn't as pleasant.  Without going into too much unsettling detail, we made the decision to have her transferred here.  She arrived on a Friday night in excruciating pain.  I arranged for her to see a vascular surgeon first thing on Monday.  
At that appointment, the vascular surgeon took one look at the necrotic tissue that had formed on what was left of Mama Hop's foot and he arranged for her to be hospitalized here, where he would perform a below-the-knee (BTK) amputation ASAP.  This was the only way to rid her body of the infection and resolve the pain.
To be continued...

Tuesday, July 31, 2018

Summer of 2018: The Untold Story Part I

I discovered Dr. Jordan B. Peterson just before the summer of 2018 unfolded and that's some sort of divine serendipity if you ask me.  As a former Harvard professor and bestselling author, Dr. Peterson inspires with a message of personal accountability and empowerment.  Search for him on YouTube and see what all the hype is about.  I digress...

Easter 2018: Mama Hop and Aunt Leanne came to visit and help us celebrate this special holiday; we also celebrated Josie and Mama Hop's birthdays, as March beckons many opportunities to celebrate.  
So there we were, in our Easter Sunday best (adorable dresses courtesy of Mama Hop), when Mama Hop casually informs us that she was experiencing some foot pain and discoloration that led to an ER visit and a peripheral artery disease (PAD) diagnosis.
   PAD is a circulatory condition in which narrowed blood vessels reduce blood flow to the limbs.  But I researched it (#KnowledgeIsPower) and discovered that it's a very common condition (affecting more than three million Americans per year), and I put it in the back of my mind, as Mama Hop was a vibrant participant in the holiday festivities.
Mama Hop and Aunt Leanne returned home and we all returned to our daily lives, anxiously awaiting the next major life change: Mama Hop and Aunt Leanne had decided to move to our area!!!!
However, Mama Hop had begun to experience more pain and physical limitations in the meantime.  I wasn't aware of the severity of the situation until I received a phone call from Leanne one morning.  This was alarming in that Leanne does not typically call me.  Furthermore, she was talking a mile a minute, telling me that she was "scared" for mom.  Here I was, 350 miles away, rushing to get my kids out the door for school, when I fielded this call.  Long story short, I phoned Mama Hop's dear friend to go check on her, and I contacted Travis, who happened to be in Mama Hop's area for his grandpa's funeral, and everyone collaborated to get Mama Hop to the E.R.  Talk about some heroic efforts from every individual involved; especially Leanne.  
What transpired after that was kind of a blur...Leanne came to stay with us.  Mama Hop underwent two surgeries.  I spent a lot of time in her home, caring for her.  

Right about the time Mama Hop's second surgery rolled around, I received a concerned phone call from my incredible husband along with an alarming photo of Leanne's swollen face.
Leanne's change in appearance prompted Travis to take her to Urgent Care immediately.  She was (mis)diagnosed with a sinus infection and sent home with a prescription for antibiotics.  As the day went on, Leanne slept non-stop (completely unusual) and spiked a significant fever.  That's when Travis took her to the ER.  She was diagnosed with a condition that could cause blindness and death.
I thought I was familiar with the notion of stress but I had never experienced the helpless feeling of needing to be in two places at one time to support two loved ones who were hospitalized 350 miles apart.  That, my friends, rips your heart out.  

To be continued...






Wednesday, March 28, 2018

Happy 8th Birthday, Josie!

Eight years ago today, this world lit up when Josie arrived in it.  She continues to radiate sunshine in our lives.  

Josie,
You are our dream come true!  You amaze us with your intelligence, sincerity, humor, and fun-loving disposition.  You've recently shown great pride in becoming independent and we are incredibly proud of you.  Happy Birthday, Josie JoJo.  You are a gift.
Love,
Your Family

Tuesday, March 20, 2018

Using Visual Aids to Promote Independence

Show of hands: Who here finds getting small children dressed and out the door in the morning a leisurely and pleasurable experience?  
...Anyone?
Well, we're right there with you.  Throw in a child with a whole extra chromosome chalked full of stubborn and the strongest coffee in the world can't prepare you for the battle that can ensue.  But here's an idea that may help:

Create a visual aid to illustrate the morning routine.

Research suggests that individuals with Down syndrome learn more effectively when information is presented visually: with pictures, objects, or gestures.  (Source)  In a previous post on behavior, we addressed how defiant or stubborn behavior may just be the child's way of communicating "Whoa!  I don't understand what's going on and I don't like the feeling of being rushed.  I'm confused and uncomfortable with this!"  (To read that post, click HERE).

One way we can make a child with Down syndrome more comfortable, and ideally minimize negative behaviors in the process, is to create a routine and to add a visual aid.  Back in 2015, CCE had a post entitled "Simple Secrets to Helping a Child with Down Syndrome Achieve Therapy Goals"  where Josie was pictured with her "Josie Gets Dressed" chart.  
We have since retired the chart because Josie no longer needs the visual breakdown of the steps to ensure that she gets dressed properly.  So I shoved it behind her dresser.  BUT, sometimes when a routine is thrown out of whack by say, a daylight savings time change or Spring Break, it helps to go back to the basics and have a refresher course so that we can get back on track.  Hence, we're revisiting the "Josie gets dressed" chart.  This chart was very simple to make.
 Materials: 

  • A piece of foam board (or original chart was made out of poster board and it didn't hold up well)
  • A Sharpie
  • Pictures of your child doing each step (or little illustrations you can search for on Google Images or here)
  • Velcro Fasteners (you can buy it by the roll or get peel and stick tabs like this
  • ** Bonus points if you laminate the photos for durability.  (This $30 one is similar to the laminator I use) 
I tried to use as few steps as possible so I didn't overwhelm Josie.  I numbered them in the order that she should complete them.  Once each step is completed, she moves the picture down to the "All Done" box.  She finds this process of moving the pictures very gratifying.

Now, I have always been a huge fan of the visual aid.  Throughout Josie's youth, I've made too many visual aids to count.  But I never truly experienced the MAGIC of a visual aid until I made one for using the toilet.  This simple little chart was a GAME CHANGER in terms of Josie's independence with toileting.
 I have one posted in the playroom bathroom, and one in the bathroom that adjoins Josie's room.  Since creating this chart, Josie's independence has soared and she takes great pride in handling restroom trips without prompting or help.  In fact, you'll hear her yell, "Good job, Independent Girl!!!"  from across the house and you know she's successfully relieved herself.  The built in praise is always a good idea when it comes to visuals!

And to all of my technology averse friends out there, this part is for you: You don't need impressive computer skills.  You don't need to be a genius photographer.  You can draw a chart.  CLICK HERE to see how Mama Hop makes charts.  So you're not an artist.  The child doesn't care.  Josie loves a good singalong.  She could care less if your singing sounds like a cat howling in a rain storm.  So pick up a pencil and do your best.  

Oh and the fancy camera part - highly unnecessary.  You can take pictures with your phone.  Even if you don't know how to get the picture off of your phone, here's what you do: You go to Walgreens, Costco, or any place that develops photos and you hand the photo lab employee your phone.  They can retrieve the photos and print them for you.  True story - I confirmed it!  

One more embarrassingly simple tip: Google it!  So you're not an artist and you're not a techie but you need a visual aid to help your child learn to use the restroom.  Google: "Visual Aid for Toileting."  Click on the "Images" tab and print!

One last thing:  While this blog tends to address Down syndrome, as that's what we deal in around here, the visual aid can be a helpful tool for ANY child with ANY diagnosis or lack thereof.  The way I see it, it can't hurt.  So try it!  Please leave any additional ideas or success stories in the comments below.

Friday, March 9, 2018

Aunt Leanne's Visit

We recently had the pleasure of hosting Aunt Leanne for an entire week while Mama Hop sought out some well deserved R&R in the Florida sun.  It was, perhaps, our best visit ever!  Every day mundane activities seemed to sparkle with Leanne's enthusiastic company.
As we've come to expect from her visits, hilarious memories were created by Leanne's unpredictability and candor.  Shortly after she arrived, Leanne told me she was thirsty.  I told her to help herself to whatever she could find in the fridge; there was plenty of bottled water, flavored water, Powerade...so it took me by surprise when Leanne found me and told me that she really liked that orange slushy that was in the fridge.  I said "Orange slushy?  What orange slushy?"
"Yeah, that says 'shandy'; I had a hard time saying it...is that a healthy kind?"

I'd forgotten all about those orange shadys that I'd been hoarding since summer.  They come in a variety pack and orange is my favorite flavor.  My neighbors even saved their orange ones for me.  But I guess a sibling's fundamental purpose is to teach us how to share, right?

Oh but Leanne earned those Leinenkugels that she helped herself to by assisting me with many of my mom jobs throughout the week including getting kids dressed and off to school, tidying up toys, preparing meals, cleaning up messes after meals, wiping snotty noses, volunteering at school and church, etc...
There's a vindication in having someone else walk in your shoes and realize that even though you consider yourself a halfway responsible person who has her act together, makes plans, and sticks to schedules, when kids are brought into the mix, the best laid plans sometimes fall apart.  Take, for example, the morning Leanne tried to help Biddy make her bed.  In Leanne's eyes, it was an innocent gesture from a considerate aunt.  To to a headstrong three year-old in search of independence, it was a rage-inciting insult.  CLICK HERE if you missed it.
Oh but there were other parts of the day when Biddy and Leanne made the most cohesive team.  They read books together, played hide & seek, and even enjoyed a picnic in the park while the other kids were at school.

But it wasn't just the baby of the family who benefited from the company of a doting aunt.  There were many sweet moments that we've come to expect from Leanne and Josie.  These two have a bond that no one else can truly relate to. 

One morning after school drop off, Leanne turned to me and asked, "Are you jealous?"  I said, "Jealous?  Of what?"  She replied, "Of me and JoJo.  She loves me.  She loves to hug me!"  I said, "No, I'm not jealous of you and JoJo; I think it's great!"  She crinkled up her nose and angrily refuted, "Then why did you tell us to stop hugging this morning?"  I said, "Because she had to go to school, Leanne!"  Sheesh!  Someone has to break up the love fest every once in awhile or we'd never get anything done around here!  LOL!

Oh but it's amazing how productive we were.  The week was so busy, the time just flew by. 
Leanne accompanied us to Faith Formation at church.  We dropped the girls off in their respective classrooms and found our post where I serve as hall monitor every week.  And yes, it's just as hostile and intimidating as it sounds; there will be no noise, running, nor loitering in the hallways on my watch.  Jesus has authorized me with the authority to keep the church safe and orderly...
But on the rare occasion that there's downtime from the intense fury worthy of a "Law & Order: The Hall Monitor" spin off, or when I have an extra set of hands like Aunt Leanne, we may take on other work.  This past week, Leanne sharpened so many pencils for the special needs ministry coordinator, it will be Advent season before they have to reach for that pencil sharpener again.  And Leanne was so darn proud of her work!  It was truly a privilege for her to feel like she could make a purposeful contribution. 
  After lending her time and talents at church, Leanne was eager to do it again at Josie's school.  It happened to be Dr. Seuss week and the theme of the dress code that day was "Oh! The places you'll go!"  Josie was supposed to dress like what she wanted to be when she grows up.  She dressed like Aunt Leanne.
Leanne and I read "The Wocket in my Pocket" and afterward, the kids worked on rhyming the word "wocket" and creating their own Dr. Seuss inspired "wocket" creatures.  We had tons of fun with all of those curious and creative first graders!
And after a fast-paced week of taking care of kiddos and everything required to make the household function, Friday rolled around and Travis and I decided to take Leanne out to relax and unwind.  We dined at our favorite Mexican restaurant and then embarked upon one of Leanne's favorite past times: karaoke.

Some may recall a story I've shared about how Leanne got a karaoke machine as a child.  Every morning, before school, and every evening when she got home from school, Leanne would haul that karaoke machine out to the front porch, plug it in, and serenade the neighborhood from her potted-geranium-and-welcome-mat flanked "stage."  Her passion for this hobby was so intense that my parents had to impose restrictions about how early Leanne could start and when she needed to wrap it up for the night.

I was a little surprised to see how much Leanne has upgraded her show to include lots of confident hair tossing and some really, um, enthusiastic choreography:
I was expecting the old vaudeville stage hook to appear at any minute.  But no one seemed offended by Leanne's inclination to shake what her mama gave her.  

I don't know if Leanne wants me to share this part or not but she met another gentleman that night.  He also happened to have an extra chromosome.  He was all dressed up in a sweater vest and bow tie and he gave a finely tuned, albeit, more conservative performance.  Afterward, Leanne went up and complimented him on his performance.  I couldn't hear what was said from where I sat but I saw an enthusiastic hug.  Later, the gentleman came over and introduced himself to Travis and I and he told Leanne that she's pretty.  A smart guy knows a good thing when he sees it!  

Overall, it was a really incredible week.  It was so much fun that I asked Mama Hop for one more day with Leanne.  We needed a day to just relax, enjoy each other's company, and drink "orange slushies" while coloring.  
Aunt Leanne, please come back soon!  Stay as long as you want.  We absolutely loved having you here!