Monday, February 20, 2017

Runner With Ds

According to a peer of mine who is a runner and has a daughter with Ds, Kayleigh Williamson isn't the first person with Ds to finish a half marathon. But she is for the Austin Half Marathon. 

Kayleigh Williamson to Run Austin Half Marathon

Kayleigh Williamson Finishes Half Marathon

[photos link in the article]

Maybe Hannah will follow her Mama’s footsteps one day? : )

Friday, February 17, 2017

Lately - February

Our past two months have been a bit stressful. It seems to be easing but I don’t want to jinx us!

Tim has been juggling insurance and contractors for the damage of the felled tree on our house. Then we were told an ash tree between us and the neighbor needed to come down - with this “climate change” weather, who knows if it’ll come down in a February thunderstorm. Additionally, a tree on the OTHER side of the house is shading the home TOO much so there’s a huge moss patch which is a big bad thing (moisture!). So those two jerks are a huge financial blow.

We’ve had at least three appointments every week since the beginning of the year - as well as registering two children for new schools - !

Hannah was not herself early January and we finally took her in to discover a double ear infection. Maybe a week after finishing her antibiotic,  she and Nora both started coughing - Hannah had a low grade fever for about a week and didn’t eat for three days - which is enough to send me into a tailspin. We had to cancel a handful of appointments including Hannah’s annual cardiology appointment which is now pushed to April. 


Sick toddler : (




I still haven’t kicked the cough and Tim isn’t feeling 100%. 

One interesting event: Nora’s first professional haircut! We have a local place that sells playsets and the showroom is a huge indoor placespace for kids - very cool. Also inside is a kids’ hair salon. A friend recommended it so we tried it out. 

It was... okay. The staff were a bit rough around the edges. I thought I smelled some cigarette smoke. The owner/manager [?] gentleman hovered around me a little too much for my comfort. The cut itself was okay - days later I found uneven pieces. Then Nora’s hair was sprayed with some... scent?? Like a dog who was at the groomers. The experience was a little bizarre, but Nora loved it. Not sure I can convince her to try other places...




Yup. “First Haircut” certificate - Age 5. Haha!


After feeling pressure from late December into February, Aunt Stephanie was super sweet and offered to watch the girls for a few hours so Tim and I could get out alone for a bit. It was wonderful! We tried a newer Asian place in Milford that was delicious, then hit 50 West Brewery - of course. We were home by 8:30 to put the girls to bed. 





Hannah’s therapies have been going well. The only struggle is self-feeding. It doesn’t matter what spoon, what dish we use - the girl just isn’t interested sometimes. She’s acting like a two-year-old. Just wants to fart around. So then I end up feeding her so she gains some weight. It’s a terrible game of balancing her own self-teaching and getting her to actually EAT. 

Saw Hannah’s ophthamologist - continued patching. I guess it’s better than surgery. She has a new prescription and probably needs fitted for new Miraflexes. 

Yesterday we saw ENT as a follow up from TWO ear infections ago to see if she’s still holding fluid. She certainly is. ENT and Cardiology will coordinate to do the ear tube insertion while she’s under anesthesia and also do her annual echo at the same time - ! It’ll be a long day, but better than going under twice. And minor!


Starting to learn to jump! Kids with low muscle tone also have low join awareness - i.e. need to LEARN to jump.

Practicing shallow steps.

Love Has No Labels

Saw this video recently and got a little misty - especially when it showed our homies with extra chromies!

Fans of Love

The Ad Council also did this amazing spot two years ago:

Love Has No Labels

Wednesday, February 15, 2017

The Licker

Therapists have suggested we let Hannah get messy - to make sure we’re engaging her senses. There are no red flags for sensory issues, it’s just an exercise to make sure she doesn’t develop them. 

So a few times now I just plop some plain yogurt on her tray and let her have at it. Let me tell you - as a Type-A personality, I cringe at watching this. Because then I have to clean it all up.

I got past it for Hannah’s sake. 

However, last night during our mess-fest, Hannah decided she was going to enjoy the yogurt while playing in it. At one point Ailo joined her and both were licking yogurt off the highchair.

My kids are the coolest.


Tuesday, February 14, 2017

Where Have All The Kids With Ds Gone?

I’m glad a media outlet as mainstream as Good Housekeeping is shining light on the realities of Down syndrome. 

Where Have All the Kids With Down syndrome Gone?

With the rise of prenatal testing, it’s frightening that - perhaps - due to lack of knowledge and outdated statistics, people with Down syndrome could theoretically become “extinct.” Absolutely NO medical professional should utter the words, “Best-case scenario: Your son will mop the floors at a fast food restaurant one day. Worst-case scenario: He will never feed himself.”

Unbelievable. Information provided to expectant Mothers needs to be up-to-date, accurate, and unbiased. Thankfully there are resources such as The Down syndrome Diagnosis Network that are attempting to educate medical professionals and their staff. 

While I think Emily Zilcha in this article was poorly informed and made assumptions based on her own misconceived ideas of Down syndrome, her decision was hers. I wonder if she’d been more educated, would she have made a different decision? Maybe not. 

The last woman, Hallie Levine, probably seems the most realistic/relatable to me; “Deep down, I was probably a narcissistic, self-absorbed person who just didn’t want a kid who was less than perfect.” 

No, Down syndrome is not all rainbows and unicorns. But neither is raising a typical child. We have our challenges, but at the end of the day, we live a great life and Hannah’s quality of life feels pretty great. The resources and interventions available now are truly helping Hannah achieve more. 

Raising a daughter with Ds has, and will continue, to alter my perspective of what really matters in life.