Calvin Paul Johnston was born Sept 17th, 2020 to my youngest sister, Katherine and her husband Chase. Our family was so extremely excited, and Nora is excited to have a cousin on the Batty side. Hannah loves “Baby Calvin!”
The bittersweet part is that we’re in a pandemic - so the visits aren’t often, and we stay outside, and I can’t really hold him .... so hopefully later in 2021 we can try and get some more family time so we can enjoy Calvin’s 1st year : )
Nora”s 9th birthday was quiet but great - it’s sweet that Nora understands we could not have a party. We did have over her one neighbor friend who is also in remote school. Along with our aide that afternoon, we all sang Happy Birthday and cut Nora’s cake - a requested Christmas tree! Unfortunately, curious 6-yr old hands smooshed the box stop and crushed the star on top.
Nora got a water bottle, some blue-blocking eyeglasses (don’t ask me, she wanted fashion frames), and a pair of classic checkered Vans slides. She was a happy 9-yr old!
Then this gal turned 41 (!) on the 10th. There are days I still don’t feel like a grown-up or mother. But my aches, few greys and fine lines say otherwise. No bother though - I’m healthy, happy and am able-bodied and that’s something to celebrate.
I actually had to go into the office on my birthday, so I did actually put a dress and boots on. My office manager got me bagels with veggie cream cheese - YUM. A few friends dropped off porch gifts which was so thoughtful.
Tim and the girls got me my long-for wished grapevine trees for the porch, some Trader Joes goodies, and delicious cheesecake bites from Fresh Thyme. The best gift were the homemade items from Nora and seeing Hannah write a card for me - knowing she can write and (sort of) sound out words is the best gift ever!
Well, just two weeks after my surgery, Ailo was up for his.
Sweet old boy is 11 years old and the fatty (benign) tumors are starting up. The one on his leg was wrapping around a nerve so they wanted to remove it. We also got his teeth cleaned while he was under.
Poor guy came home pretty beat up and I totally forgot he’d have a cone on!
He was miserable... it took him a few hour to even lay down. Didn’t eat food for 48 hours. The plastic vet cone looked so huge and uncomfortable, I went back to PetSmart to get him a smaller, softer cone which did work out.
The stitches were pretty gnarly, but by now his fur has grown back and you can barely see it now.
He’s a good boy and getting old ❤️
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| This donut was good in theory, but he could reach the stitches. |
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| Long sock around head, cone around neck. |
Our neighborhood isn’t booming even during typical years. I never need more than 1 bag of candy, it’s ridiculous. Therefore, it’s not bustling with people and I felt somewhat safe if Nora chose to Trick or Treat, which she opted not to.
Instead, we set a table at the end of the drive with candy in a bowl. Our hired aide for Hannah (who has been with us since Memorial Day) stopped by our house celebration.
We weren’t sure this summer or early fall how we would approach Thanksgiving. However, as the date approached, COVID cases rose, hospitalizations have risen (and is now shocking how little beds remain in Ohio’s local hospitals), and our nation has hit 300,000 deaths since March.
I’m thankful our families on each side are all on the same page and agreed it’s best to be safe and not congregate indoors. It’s “just” one year. Our family is exposed to our aide for Hannah as well as one neighbor playmate for each girl, so we are not completely safe. Those “bubbles” go further than you think.
We still made sure to call our family members to send well wishes.
We were actually excited to make our own menu. We did special order smoked turkey from our local BBQ joint as well as the pumpkin pie from our local donut/bakery. Helping the local businesses during the pandemic has been important to us!
The Kron menu:
Whoops - that was terrible posting almost a month ago without follow-up! Very quickly: Hannah’s bloodwork was fine!
It took over a week for Hematology to call me back.
They want to do another round of labwork in 6 months and see Dr. Ware in a year. Fingers crossed by then we are all about and about a bit and our immune systems are up and running again : )
Children with Down syndrome get regular blood work to keep up on their health and any hidden illnesses.
The labs cover; celiac disease, thyroid, red and white blood cells, and iron levels. We have friends who have celiac, low iron, and various autoimmune disorders.
In 2018, Hannah’s white blood cell count was about 5.3. Normal range is about 5.5-15.5.
In 2019, Hannah was at 6.45.
In early October, her WBC was 2.93 which prompted a call from our pediatrician. However, the rest of Hannah’s labwork was in normal range, so it’s not as critical as, say, other wonky numbers that point to leukemia. God forbid.
We had a 2nd draw last Friday and her WBC was still hovering around 2.87.
Our pediatrician is stumped and therefore referring us to Hematology... which sounds daunting and I am slightly nervous just because *something* could be slowly causing her WBC to drop over the years. Those of us who have kids with DS know that low WBC is very common.
We’re headed into Children’s this Friday morning and will keep everyone posted - keep fingers crossed and prayers up.
Many in the DS community have been following Chris Nikic - a man who is training for the Ironman on Nov 7th in the Gulf Coast - and happens to have Down syndrome.
He is shattering assumptions of what people with Down syndrome “won’t” be able to do. He didn’t walk until age 4 or eat solids until age 5.
I appreciated this blurb:
“Though Chris will swim and run while tethered to his Special Olympics partner and receive help transitioning between sports, he will be tasked with following the rest of the Ironman rules. “We don't make any accommodations for anyone around the core elements of racing,” explains Andrew Messick, CEO of Ironman Group. All athletes must complete the same distances and meet the same cutoff times. That means if Chris crosses the finish line in less than 17 hours, “it'll be the same accomplishment as everybody else,” Messick says. “And that’s awesome.” It’s also damn impressive.”
GO CHRIS!!
Hannah has annual lab work to keep eyes on her thyroid, celiac, iron, and white blood cell count (WBC) - these specific items can be more likely in people with DS. The high white blood cell count can at times be a lens to possible leukemia.
We had her blood drawn this past Friday. The phlebotomist was a woman we see every year. We both restrained Hannah a bit and got the needle in Hannah’s left arm. The phlebotomist didn’t hit the vein well enough (!!) and kept trying to maneuver the needle back into a vein - for the love of God woman, it’s your ONE job!! Hannah was wailing and I was very close to barking at her. She finally stopped, removed the needle and gave Hannah a break. She called in some help and the three of us held Hannah steady while she successfully got Hannah’s right arm.
Hannah thankfully bounces back quickly and we were on our way.
By the midday Friday, her WBC had been reported - normal range is 5-14.5 and Hannah’s was 2.93. Now, if I wasn’t informed and didn’t know low WBC can be quite common with kids who have DS, I would have freaked out. BUT all of Hannah’s other numbers were in normal range, so I knew she was okay.
Her pediatrician knew this and agreed Hannah is probably fine, but we have to get lab work done again in two weeks - wah wahhhh.
Also of note - my last trick for digging into Hannah’s sleep was her iron/ferritin levels - which were also normal.
So now we know it’s 100% behavioral. Ack!
Quite a word, eh? “An oophorectomy (oh-of-uh-REK-tuh-me) is a surgical procedure to remove one or both of your ovaries.”
My parents graciously drove down to watch the girls while Tim took me to my surgery at Christ - about 30 minutes away. Arrived at 8:30am.
I had a pre-op COVID test the week prior. It wasn’t far and a testing site for only pre-op needs - which was nice, I was the only patient at 8am. The swab was gentle, she only went a bit into my nostril, not as far up as the other tests.
Tim and I went into a triage room. Got my IV and gown on. The new warming blankets were pretty bizarre - they hooked up to a small vacume-sized machine that blew hot air into a hollow blanket. It was actually quite cozy and warm.
They put the oxygen mask on me, and I was out in 5-10 seconds!
The next thing I knew, my eyes opened in recovery. The RN next to me asked how my pain was. I muttered that on a scale of 1-5, my pain was a 2. It was strange laying there, coming out of anesthesia. I kind of enjoyed just laying and resting.
Surgery only lasted 45 minutes! Dr. O spoke with Tim at 11:15am. I opened my eyes around 12pm, was wheeled back to a room around 12:30. I think we left near 1:45pm?
I have three incisions; one in my belly button (I can’t even detect it) and two on each side of my pelvis.
I needed extra strength ibuprofen the first three days, never needed the big gun painkillers! I’ve mostly just been sore. I didn’t realize how much I used my ab muscles throughout every day. I did take stool softener too because.... I needed gentle help!
Recovery has been much easier than anticipated. I’ve been enjoying the down time, taking care of odds and ends, running errands - like renewing my drivers license! I’ve been taking walks every day while I listen to podcasts - it’s been relaxing!
My follow up is this Friday. Dr. O called me last week to see how I was doing - she was happy that I’m doing well and said my health and physique helped the ease of recovery.
She advised I take two weeks off which I questioned. At first I was irritated I had to use so much PTO. However, if we don’t use it, we lose it. So.... in a way I’m glad I was able to take advantage and use all my PTO that I had! Luckily we’re headed into November so Thanksgiving is approaching and then a good break for Christmas.
