Friday, October 18, 2019

1:59 Marathon --> Down syndrome

For avid runners, we know “typical” marathons average around 4 1/2 hours - at a 10 minute pace.

When I ran the Flying Pig half marathon in 2013, I finished in about 2 hours and 20 minutes. As I came down the final half mile with the finish line in sight, the crowd cheering grew enormously. On my left in the marathon chute, the winner of the full marathon was passing me. It was surreal and super cool. He ran a full marathon in the time it takes me to run half that distance. Mindblowing. 

As time has gone on, marathoners have been inching closer and closer to breaking under two hours for a full marathon. It just happened last week. 

Nike has funded and trained a small trio of elite men (all from African countries) since 2014 to attempt this record. 

What most people don’t see are the scientists and engineers behind the scenes. Robby Ketchell is a performance scientist and a long distance runner. He also has an 18-month old son with Down syndrome. 

Robby is also virally famous for a photo taken of him carrying his son over the finish line of the 2018 NYC marathon

So proud of Robby and his connecting two of my loves: Running + Down syndrome! Keep up the advocacy, Robby! 

Thursday, October 10, 2019

Organ Transplant Discrimination

Did you know that people with Down syndrome and other disabilities can face significant barriers to life-saving organ transplants? Shocking, right? 

  • Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
  • Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

As the parent of a child born with both Down syndrome and a heart defect, Jackie Ward of Shelby Co, Ohio knew from the moment of diagnosis that she’d have to become an advocate for her daughter. “I had no idea that I would have to advocate to show the world that her life was worth living.”

Jackie and her husband, Brandon, brought 3-year-old Ellie to the Statehouse in 2017 to share their experience of inquiring about a heart transplant and to urge passage of a bill that aims to make sure people cannot be kept off organ-transplant waiting lists in Ohio solely because of their disability.

Ohio House Bill 332 was born, and then-Ohio Governor John Kasich signed the bill into law in June of 2018. 

Unfortunately, people are still being barred from organ transplants based on disabilities. You can start with your state representative. Tell them 7 other states have passed legislation UNANIMOUSLY. It’s a great bipartisan bill that makes sense. If they’re hesitant, reach out to your state’s Disability Rights Organization and see if they can help you lobby a legislator to introduce the bill. You can use the Ohio bill as a model bill for your state, and they can just tweak it for your state.

Wonderful Cincinnati Children's Video

Cincinnati Children's Department of Developmental and Behavioral Pediatrics just put out a promo video talking about their expertise - we are SO lucky to have them in town. 

Jenn Bekins was our first feeding therapist. I feel like I’d be friends with her in real life : ) 

Dr. Wiley is so patient and helpful. 

Grateful for our resources here!

See Me For Me

Sunday, September 29, 2019

Two Decades with Friends

I’ve had two really good college friends since about sophomore year at UC (DAAP); 1999. Both of their spouses were dating them at the time. Once we all graduated, we all stuck in Cincinnati and made a point to get together every couple months or so ... it’s now 20 years later (!!!) and we still keep this up. I love it. 

Last Saturday the six of us went out - without children - for the first time since college. Mindblowing. 

My friends had suggested a tour at New Riff with Stephanie - I worked out everyone’s schedules and we made it work! A really neat tour with Stephanie and she let us hang out in the Sensory Room where we sampled the goods! 

Afterwards, we went to La Mexicana in Newport - crazy good authentic Mexican food. 

Tim and I were first to leave at 8:30pm - five hours gone with a first-time sitter! 

Such a fun evening!!

Friday, September 20, 2019

Hannah’s 1st Dance Class

A good friend in the Ds community wised me up to an amazing program put on by the Cincinnati Ballet. Ballet Moves is an inclusive dance/movement program for kids with specific needs. 

The kids are in classes with similar ages. Each child is paired with a physical therapy student - !!! How. Awesome. 

The first class was a little chaotic for Hannah; it’s her first organized class and with mirrored walls, well, she was more interested in watching herself than sitting in the group circle. The PT was super helpful and they understand it’s Hannah’s 1st time. 

I’m hopeful that with each week Hannah gets more comfortable and understands the group setting and participates : ) 

*Jack Barlow is a couple years older than Hannah and has already made quite an impression at the Cincinnati Ballet 💗

Age 5 Growing Pains

Man, we got too comfortable with Hannah’s behavior... 

Literally right after she turns 5, the school reports trickle in...

First were some concerns from her therapists: 

  • Hannah was chewing her fingers which is new behavior – and is a health risk (germs)
  • Hannah has been toe-walking – not great, we want her to have a typical gait

We were able to look into Hannah’s mouth and found that one of her missing incisors (#3 in the top row) was coming in finally - ouch! That may explain the finger chewing. 

Her therapists gave her a “chewy” – it’s super common for kids with sensory needs. The most common one looks like a silicone lego that kids chew on to keep busy. 

Hannah sort of uses it, but we need to make it more regular to see if she really needs it or it’s a temporary “teething” need.

Then there were some reports of just plain ornery-ness; taking shoes off, throwing glasses off and darting out of the classroom. What the heck Hannah! I followed up with the best we can try; distraction, redirection and praise for good behavior. Reprimanding Hannah and reacting to negative behavior only reinforces the bad behavior. 

There was a 3rd report, but I don’t want to publish it for Hannah’s future privacy sake. Let’s just say it was more sensory exploration that should be done alone in her bedroom - sheesh. Actually quite common at this age for kids with Ds. I’m just not sure if she understand it’s not a public activity. 🙈

Hoping this phase passes quickly - !!

Hannah's 5th Birthday

Wow - blogging is becoming a past time - life is busy with work, two kids in school, and housekeeping all wrapped up in a bow!

Our Little Warrior turned 5 on September 1st. We had a large birthday party since we decided to chill out on the Buddy Walk this year; the two events always butt up to each other which overwhelms me. 

We had family and friends over. Probably the last BIG party for Hannah - I want to reduce to just a few friends next year 😀

I steered away from gifts - mainly b.c she has most of what she needs and doesn’t really take to toys – Hannah prefers playing with you or just being plain active. 

The appointments and procedures have slowed down as age five is on us. Therapies happen at school. Hannah is ultimately potty trained which I’m thrilled and proud of. 

She is mostly a happy kid but definitely gets frustrated when she doesn’t get what she wants - like any typical child. 

We love you Hannah Banana! 

Monday, August 19, 2019

2019-2020 School Year!

One more year with Hannah in her safe preschool bubble 😭
The girls are excited for 2nd grade and 3rd year of preschool!

Thursday, August 15, 2019

Angel Soft Commercial

Oh my heart!

So happy brands and marketing are stepping up their inclusive games!

Morning Routine

Friday, August 9, 2019

Whooping Cough

Back in June we received a note sent home from Summer Camp that a case of Whopping Cough was confirmed in the building. Dang! I didn’t think too much of it because I choose to vaccinate. 

Well about two weeks later (late June) Nora has a bit of a cough that starts to build over days. And after seven days, it has not gone away. But she has no other symptoms; no runny nose, fever, congestion... So it can’t be Pertussis, right? 

However, protocol is that if you child has a cough, get a note from the Ped that either confirms or denies the diagnosis. 

Nora was tested; which is also brutal - huge swab up the nose. 

One day later - blindsided - she has Pertussis!! Whaaaaaaat. So even though you are vaccinated, they can still catch the virus - but they symptoms are lessened. 

SO: Hannah was given preventative antibiotics, Tim’s GP gave antibiotics, and my GP decided not to :: eyeroll :: She claimed the CDC did not recommend that. And Nora had to be kept home for 5 days/5 days of antibiotics and could return to summer camp 24 hours after she finished antibiotics. Lord.

So as you can expect - after I was not given the preventative antibiotics and taking care of a whooping child. Guess who else gets a nagging cough? Me. After a week of annoying my coworkers, I tried to track down a Pertussis test - which was way harder than you’d think. 

*Only one Urgent Care in the area tests (and I refused to wait 1hr) and Cincinnati Children’s. 

After a wild goose chase, my GP finally gives me antibiotics and after that, I’m back on track. 

So everybody – take note: Whooping Cough is out there. You can’t prevent it 100%, but you can lessen the effects with the vaccination. It can take a worse toll on infants and elderly!