Thursday, June 20, 2019

Movie with a Star (who has Ds)

Nearly started crying at work with happiness. Finally, a mainstream movie with a star who has Ds:

The Peanut Butter Falcon

Friday, May 31, 2019

Quick Columbus Trip

We had a quick trip to the Columbus area to celebrate the 1st birthday of Lily - the daughter of my long-time friend, Megan. It was a long path to parenthood for Megan and her husband, Chris, but thankfully in 2018 they adopted Lily and are settled and loving their daughter. 




We stayed one night in New Albany, hit up Easton Shopping and had dinner at Mellow Mushroom. 






I love that just a hotel room and pool can equate to an awesome “getaway” for kids!

More Transitions

More transitions as we wrap up Hannah’s 2nd year of preschool and Grade 1 for Nora!







We are saying “See you soon” to our new caregiver – as I always do, got emotional dropping the girls off and thanking Shannon for opening her arms and home for Hannah. I’m fortunate we have her for emergency days. 

We have a week off with the girls - just a “staycation” this year. 

Then June 10th starts Extended Day Summer Camp - provided through Milford Schools. I’m so happy we have this option and the girls will be together at the preschool where it’s based. Additionally, Hannah will already be familiar with the environment, so it won’t be too tough a transition for her.

Preschoolers don’t go on the Field Trips, but Nora will see a movie every week, hit some Cincinnati parks, the Art Museum, the zoo... and activities will come to the school as well; bounce houses, animal experts... I’m excited for the girls and think it will be a great summer for them – even though their parents work full time ; ) 

And finally, after two (?) years, Hannah’s swim teacher is moving on. Mariana was so great with Hannah – patient but still pushing Hannah with her progress. Hannah had one class with the new teacher, Abby, and Mariana is giving notes to Abby which will be very helpful. 




Onto our next phases!

Thursday, May 9, 2019

Zero Waste

I used to be so “green” before having two kids. Since Hannah was born, my time and energy have dwindled... I’m trying hard to get back to reducing the amount of trash we create. Seeing the recent photos of dead sealife with bellies full of plastic as well as the mounds of it floating in the ocean and beaches tears me up. 

I was excited to read about Trader Joe’s push to eliminate single-use plastic in their stores:

Trader Joe’s to Eliminate Single-Use Plastic

Did you know only about 9% of plastics can even be recycled? And those that are can only be recycled up to 4-5 times? Blergh. I did hear this fascinating story that scientists at Berkeley Labs have created a new plastic, PDK (polydiketoenamine) that can be recycled infinitely - which is good news for our landfills. 🙌

I also just bought these reusable snack bags – yay! 

And starting in on these wool dryer balls – yay! Friends tell me you can add essential oils for scent. 

Let’s keep reducing our waste people!!


Tuesday, May 7, 2019

A Sleep Update

So after the sleep study success, Hannah was still waking up and coming into our room, on average, two times a night. No bueno.

I frantically did some research on what else we could do... namely supplements. I don’t want to venture into melatonin because it messes with hormones. I found one or two other options, but no physician has dosage recommendations since supplements are’t recognized by traditional MDs. Fine. Some other suggestions were to get Hannah’s ferritin levels checked (iron) - her hemoglobin was in normal range at her last labwork, so that’s not it either. 

Looks like it was time to buckle down again and do hard work: behavioral training. 

I started about a week ago. When Hannah was close to falling asleep, I kissed her on the head and walked out. She freaked out, cried and opened the door. I said nothing and put her back in her bed, kissed her head and walked out silently. This repeated about four more times. It sucked, I felt bad, but I had to rip the bandage off. 

Eventually she whimpered and wiggled herself to sleep. Tim did this the following night, with less door openings and crying. 

It’s been one week. She may come in once around midnight, but we put her back in and she goes back to sleep and so do we. A handful of times she’ll wake in the 5am hour, but then goes back to sleep again. 

Last night she slept from 7:30pm - 6:15am! That’s a long time for Hannah. Even if she gets up once, Tim and I aren’t spending any time in her room, and that’s a big win in and of itself. 

Tim and I already feel so much better and Hannah must too! 

We’re doing it!!


A rare moment - Hannah asleep ON me for nap time.


Tuesday, April 23, 2019

Dwayne “The Rock” Johnson & His Best Friend

I’ve always enjoyed The Rock/Dwayne Johnson. I remember sitting in my dorm room with my roommate and a fellow down the hall watching WWF (they liked the sport, I was just there for socializing). The Rock was a fun performer and still is.

He is still humble despite his huge successes and has huge love for his family and those from his past. ESPN made a short film, The Rock’s Rock, about Dwayne’s childhood friend, Milton McBride Rosen, who has Down syndrome!

I love Dwayne with every story he’s in!


Friday, April 12, 2019

Hannah - Medical Updates!

So. Sleep Study was March 15th. Hannah did great - she slept well which helps for good data reading. 

We had our follow up late March and the ENT was barely in the door when she said Hannah’s episodes went from 6 and hour down to 3 episodes an hour - she crossed the threshold to “mild” apnea and we can manage it with Flonase - !! The Supraglottplasty was a success! I felt a huge weight lifted from my shoulders. Avoiding a CPAP means everything!

However - Hannah is still waking at night and coming in our room. At least twice a night. I’m not sure which angle to attack from now. Behavior training? Diet (some swear by no dairy)? Supplements (I read glycine can aid in better sleep)? I do want to avoid melatonin since that messes with hormones and sleep/wake cycles.

So – good Hannah’s apnea is under control, but we’re still not sleeping. Ack. 



We also had Hannah’s annual echo and EKG this week. She was super cooperative with our distractions for the echo. Hannah’s heart is in the same shape as last year which is good! See you in one year, Dr. Hanke! 






Spring Photo Dump

I’m finally practicing french braids on Nora - I’m not great, but not horrible. 

Also - huge milestone; we met two high school girls who are on deck as babysitters - this has been a long time coming. I wanted Hannah to be a bit further developmentally before leaving her with someone other than family. Remember the g-tube? 

One of our sitters also has a sister with Down syndrome - even better!! Tim and I got out last Friday for about two hours - it was strange and awesome and a sweet taste of small freedom 😄

*The extra Hannah photos are from the sitter - she’s really on top of snapping ones for me. 















FINALLY - A Tooth Story

Nora’s teeth came in late as a toddler - about 8 1/2 months. I knew this would eventually correlate with late tooth loss. Those tales are true. All her peers have been losing teeth for years now. Multiple teeth. 

We’d been waiting and waiting. In February, the shark (adult) teeth made an appearance. 

Finally at the end of March, Nora gave one of the loose fellows a tough wiggle and it came out! The Tooth Fairy left a whole dollar - lucky girl!





Monday, March 25, 2019

How To Navigate A Special Needs Encounter

You all know I’m a big fan of Amy Webb/Miggy and her posts and advocacy for those with disabilities. 

Her article on How to Navigate a Special Needs Encounter has been making the rounds again, on USA today even! 

I think it’s very important to read not only as a parent but could also apply to adult encounters. 



Also of note – I keep reading that the term “special needs” is not preferred by those who actually have differing needs - I know, it’s hard to keep up and know what proper language to use. I still use “special needs,” but frankly, Hannah doesn’t have special needs, her needs are just like everyone else, right? 

I found this article super eye-opening - mainly because the author is speaking with her adult peers with disabilities. 

3 Reasons to Say “Disability” instead of “Special Needs.”

Some interesting quotes:

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Disabled people should control the conversation about their disabilities, and the language used about them, not their parents.”

A need isn’t special if other people get to take the same thing for granted.”

“Handi-capable,” “People of all abilities,” “Different abilities,” “Differently abled,” and “special needs” were made up outside of the disabled community, by people without disabilities. 

‘Dis’ = Another Way of Doing and Being

“Disabled” meaning an ability to do or be something in another way.
“Disability” meaning an ability to do or be in another way.

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Interesting to read and important to hear from those who actually have the disabilities!