Caregiver Monica

A reader of this blog might wonder, what has Monica been doing the past many months?

When Monica’s family was visiting relatives in England in December, Monica and her mom had hoped to be a comfort or a help in her aunt’s valiant fight with cancer. Instead, Monica’s mom herself had to be hospitalized with serious medical issues. Monica and her younger brothers had to return to the States alone to get back to work or school, while their dad stayed with their mom. It was a serious adventure, rather than a fun, exciting one they might have loved to take.  The three of them took a train, transferred trains, rode the underground (the Tube), then stayed alone in a hotel, then rode a plane to Toronto, found the car in the park-n-fly lot, and drove four hours to home. They cooperated as a team with no problems. They also had a great prayer team at home and in England storming the heavens for their safety and their Mom’s healing.

When arriving home, the three found Grandma and their older siblings had already mobilized to keep the family together while Mom and Dad were still managing medical challenges.  Monica had to adapt to many changes. Dad brought Mom home to Ohio in a Life flight.

After a week in the hospital, she was moved to a rehab facility. Monica had to see her mother unconscious, then regaining consciousness, but unable to do many things.  Monica wrote notes to her mom and prayed for her with the family. When her friends took her to dinner, she invited them to the rehab center to visit her mom too.

Mom came home faster than anyone could have hoped; thankful for the miracle of the perseverance of Monica’s dad to get the right medical attention, the miracle of all the connections among family and community providing such amazing prayerful support and the miracle of healing.

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Monica found her mother mostly on the couch and it was Grandma doing the driving, shopping, laundry and organizing the house. IMG-20170126-WA0004

Monica had a little trouble adjusting. At the same time, Monica had work changes: a new work location, a new supervisor, a new van driver. Monica was not able to describe how these changes were stressful for her, so it came out in some disagreeability and difficulty cooperating – some just going to her room and closing the door.

As things settled down for her, Monica began showing more and more compassion to her mom.

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When arriving home from work, Monica goes right to her Mom to see if she needs a drink, or Tylenol, or another blanket. Monica increased her determination to complete more household chores.  Monica began calling her mother every day from work during her breaks and lunch to check on her. When Grandma had to leave, Monica immediately started making breakfast for her mom every morning.

So much to be thankful for!

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Fashionable Me

Some of Monica’s mom’s friends were planning a fashion show fundraiser. The daughters were going to be the models. Then one of the girls thought of Monica and wanted to include her. The girls had tea at Sally’s house and tried on vintage dresses. Then they all went to The Limited and tried on new clothes. The fashion show was about femininity and elegance and how they have been expressed in our clothing. Also how the clothing of other countries influenced clothes in the United States.

The girls arrived early on the day and practiced walking on the platform.

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Then they all got dressed in a special room. There were lots of clothes and accessories. The girls helped each other.

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The show started with some very beautiful and very old dresses.

Later there were the dresses from other countries. Monica’s first dress was a dirndl showing the influence of clothing from Austria. (Perfect for that Sound of Music fan!)

After the vintage dresses, everyone had lunch. Monica was seated with the other models, not her mom!

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After lunch, the girls modeled the new clothes from the Limited.

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Monica knew just how to stand to show off the dress she was wearing! It was a lot of fun!

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More Medical Adventures

    • When Monica was little, I was sometimes overwhelmed with medical questions. Monica just had more issues than our other kids. Well, it does make sense. The statistics from the CDC show about 50% of babies with Down Syndrome have a heart defect, up to 75% may have hearing loss, up to 50% have sleep apnea, about 50% will require glasses, and up to 60% have eye diseases like cataracts and many have digestive tract issues. Over the years, Monica has proved that her medical events are just more adventures. I have included details about her open-heart surgery, frequent ear infections, broken ankle, and thyroid issues in other blog posts. She continues to charm her medical providers and her positive outlook makes these challenges easier.
    • When each medical question came up, I found myself searching for someone who had been through it before. How do you prepare a kid for surgery? How do you keep them from losing their hearing aids? So, I am going to share our latest adventure in case someone else is wondering….what if my child with Down Syndrome has to have an Endoscopy or Colonoscopy?
    • If you aren’t interested, feel free to check back for the next post!
    • Monica has been having frequent loose stools and with Celiac Disease common among people with Down Syndrome, not to mention that she has two brothers with Celiac, I thought we ought to do some testing again. She had had the blood test for Celiac in the past, maybe 10 years ago, but that doesn’t completely rule it out. After doing the new and improved blood tests, and including the newer genetic test, and stool tests, the gastroenterologist was pretty sure it could not be Celiac Disease, but couldn’t say what was wrong without ‘going in’.
    • The prep for the endoscopy and colonoscopy is similar to adults, but they actually try to be a little gentler with young people, spreading it out over a longer period. So beginning on a Thursday morning, Monica could have only clear liquids, a dose of stool softener, and then in the afternoon a series of Gatorade with laxative stirred in.
    • This is when the fun begins.
    • I highly recommend having brothers who will play games and yell ‘Chug! Chug!’ to keep the afternoon flowing…
    • Monica was such a good sport, giving reports after each trip to the bathroom.
    • She woke during the night to go a few times and had some stomach cramping, but really slept almost normally.
    • Friday morning, she could have only a few sips of water with her thyroid medication.
    • She packed her own bag for the surgery center. Games, coloring books, markers, prayer books, a favorite stuffed animal, stationery and her address book, photo books: enough to last weeks.
    • On arrival, she changed into the hospital gown folding her own clothes neatly into the bag provided by the surgery center.20160325_094643
    • I refused the pregnancy test for her and had to sign a form saying so.
    • The anesthesiologist asked her if she was too old for stickers and then decided to bring them anyway. Disney princesses.20160405_111623
    • She was trying to show the nurses some photos in her phone of her older brother’s trip to Rome, but we observed her speech was becoming slurred – the Versed was working already.20160325_113415
    • Soon, she was rolled away.
    • When they called me back in, she said, “I had a great nap!”
    • They let her choose Diet Pepsi and Oreos to help her wake up.20160325_114044
    • The gastroenterologist brought photos from each part she examined during the procedure. Monica was fascinated. She tried to match the photo label with the diagram showing where it was taken.20160405_103740
    • She was back to herself within an hour and we were headed home. She had no after effects from the procedure or the anesthesia!moni to blog
    • When we know more about results, I can write those too.

World Traveler

Monica had the privilege of traveling to England to visit her Aunt Terry. She was great company for her mother and a wonderful guest.  She took photos of every new experience but that is too many to include here! We will share just an overview of the delightful adventure.

We drove across the Ambassador Bridge into Canada and noticed lots of wind turbines along the highway. We checked in at the Toronto airport. We charged our phones and enjoyed the iPads for travelers. The flight to London was smooth. Monica brought knitting, books, workbooks and her iPad. She was too busy to sleep, but when she got on the train out of Gatwick airport she gave in to a few winks.

We changed trains at St. Pancras/Kings Cross. We bought postcards and stamps there.

Monica’s Uncle David picked us up at the Scarborough train station in a car with the steering wheel on the right side and drove on the left side of the road!

Monica loved relaxing and sharing a cup of tea with her family there, but still did her best to help out with emptying and loading the dishwasher and setting the table.IMG_2922

Since we were there for Mardi Gras, Uncle David took us to the Scarborough events for Pancake Day. The Pancake Races had teams from different organizations running obstacle courses while flipping pancakes in crazy costumes. Then we walked to the sea to see Skipping day in which the children remember skipping with the old fishing ropes when the fisherman replaced them with new.

 

For the first Friday of Lent, Uncle David brought in Fish and Chips and Mushy Peas!20160212_182232

Monica’s cousins arrived on the weekend and we celebrated a birthday together.

Monica was the one who knew how to set the timer on the phone to take a group photo!

On a very windy day, we drove around Scarborough castle and saw the north beach.IMG_2983

After a week of really getting to know her aunt and uncle, we had to leave. 20160215_131319We took the train back to London and Monica’s cousin’s girlfriend met us for a walking tour of Leicester Square, Trafalgar Square, a view of a guard and the entrance to Buckingham Palace, then a stop at the Treasury where her cousin works, a peek at Big Ben and the Eye.

Then supper and good night’s sleep before the Uber taxi took us to the train back to Gatwick.

 

It was a very long flight with an unplanned fuel and de-icing stop in Quebec City. Monica played her President’s game on her iPad so many times she hit a new high score.20160216_142128

Back at Toronto airport, we scraped the snow off the car when we found it in the long term lot and headed for home. We were so happy to be greeted by Monica’s nieces and nephew!

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