Thursday, December 13, 2018

Nora’s Special Night Out

Ever since Nora was about three or four (?), Tim and I have taken Nora to a play around the holidays - just her with Mommy & Daddy. We feel it’s important to do things alone with Nora since Hannah has more needs. Nora can still be very resentful of Hannah even though our time with Hannah is always medical or therapy.

This year we took Nora to see Junie B Jones, Jingle Bells Batman Smells at Memorial Hall. It was so fun! I had never been, it’s a small, beautiful theater. I was pretty excited they served adult beverages. For once, I wasn’t on high alert with Hannah and could relax - so I got myself a Pinot Noir! 

The play was super cute and afterwards we took Nora for sushi - she loves shrimp tempura rolls : ) 

Happy 7th Birthday my sassy dear!

Hannah’s Grandparents Day

Every year in early December, Hannah’s preschool has Grandparents Day where they conveniently hold the book fair and invite Grandparents to come visit and have a snack and do a craft. 

Nana & Papa Kron have graciously come the past two years and are great about sending photos to capture the silliness : ) 

What’s this coyness?

Is Hannah crushing? : D

The Titration (CPAP) Study

Spoiler Alert: It. Was. Awful. 


First problem: I didn’t realize a titration study (calibration of a CPAP) actually involves having to wear the mask. Damn. No one ever gave us a practice mask, so that already set us up for a bad night. 

The first battle was even getting Hannah to wear the headpiece. That was a fight in and of itself. Fighting and thrashing. Myself and the technician decided to wait until she fell asleep. 


Getting the mask on was a struggle, but Hannah would somewhat tolerate it and doze off. Then I would wait until she was solidly asleep and try to attach the air hose. The longest she went was 10:30-11:30pm. Then she woke up gasping and thrashing, ripping it off her head. These attempts and gut-wrenching wakings happened until 3:30am when I exhaustively told the technician to stop. I was done. My child was in distress and now I’m afraid she’ll never take to this device. 

We slept from 3:30-6am. 

We got to the car a bit before 7am and my car was covered in ice and I couldn’t locate an ice scraper in my car. I nearly cried. Turned the car on and sat with the heat full blast for a good 10 minutes. 

I gave Hannah a bath to get some glue out of her hair. I sent her off to the babysitter so I could nap. It was good to have the afternoon to myself. Nap, run, coffee & shopping. I needed that afternoon alone.

I’m fully convinced this CPAP is not going to work. We were told if Hannah didn’t tolerate CPAP, we’d move to surgery - which still isn’t guaranteed to solve her sleep apnea. 

Additionally, I’m concerned about the costs. Our insurance only covers 50% AFTER the deductible is met. 👎Sigh. And we’re not even sure she’s going to wear it. I want to tear my hair out.

Wednesday, December 5, 2018

Hannah: Sleep Apnea Status

We had Hannah’s endoscopy and MRI back on October 26th. There was nothing groundbreaking; her diagnosis is: 

1. An enlarged tongue (well duh, that’s most kids with Ds - or a smaller mouth)

2. A floppy epiglottis; the flap of cartilage at the root of the tongue, which is depressed during swallowing to cover the opening of the windpipe. This flops closed while she sleeps which causes her to stop breathing (low muscle tone strikes again). 

So the next steps are: 

1. A CPAP titration study (sleep study used to calibrate continuous positive airway pressure (CPAP) therapy.)

2. If Hannah cannot tolerate the CPAP, we will move to a supraglottoplasty; a surgical procedure to remove obstructive tissue from the airway. It sounds crazy, but lots of kids we know have had it and has helped them. 

Dr. Shott said this procedure is only 40-50% effective to get children completely off the CPAP. We asked for surgery first but were told no. 

Tangential, the bad habits feel like they’ve grown. We’ve gotten out of laying down in her bed, moved to the chair, and are now sitting by the door - the “camping out” method. We have yet to make the jump to leaving her room while she’s sleepy. She stands at the door and screams and sometimes falls asleep AT the doorway. Ergh. 

So all this work feels pointless because a CPAP is headed our way and we’ll have to lay in bed with her so she can (maybe) get comfortable with this hose hooked up to her face. 

And those of you who know Hannah can certainly paint a picture of how she’ll tolerate this thing on her face - are you kidding me?! Maybe she’ll surprise us. She handles sleep studies fairly well. 

Anyway, I’m headed to Children’s tomorrow night for our titration study. Zzzzz. 

Friday, November 30, 2018

Friday Night Shenanigans!

Hannah was super twirly and dancey tonight! And Nora’s creativity is... intriguing. 

Wednesday, November 7, 2018

Rockin' Marathon

The New York City marathon was this past weekend. One of the bigger ones in the nation. 

This photo was snapped and went viral, but most people don’t know the backstory of Robby Ketchell carrying his son:

I was one of the scientists who worked on Nike’s Breaking2 project to help a runner break two hours in the marathon. I’ve run a lot of trail races and ultramarathons, like the 100-mile Leadville Marathon. But this year’s New York City marathon was my first road marathon.

Earlier this year, on March 12, my wife gave birth to our son, Wyatt. He was born with Down syndrome. I wanted a way to honor him and everyone else affected by the syndrome. So I decided to run New York in his honor, to raise funds for others with the same circumstances. 

This year has been hard. After Wyatt was born premature, we spent 67 days with him in the NICU. He left the hospital on a feeding tube, and we fight every day to keep him from having to go back on one. There’s so much involved with keeping him healthy—early intervention, physical therapy, occupational therapy. It’s been a tough journey.”

Oh that sweet face <3

Thursday, October 25, 2018

Chip & Joanna At It Again

You can’t NOT like Chip & Joanna Gaines. 

Another reason to love them this week: 

As part of Chip's annual Chipstarter program, the Fixer Upper stars gifted a Missouri couple with the $16,203 they needed to adopt a two-year-old boy with Down syndrome from China. Jason and Melinda Simmons, who applied to Chip's contest earlier this fall, are now able to bring their son home.”

Gaines help the Simmons adopt

Tuesday, October 23, 2018

Quick Trip to Chicago

My oldest friend from 1997 (??) adopted her daughter back in May... it was a long and winding road filled with lots of detours. I knew I wanted us to all go hug Megan, her husband Chris, and their new daughter, Lily, who is now five months old. 

We didn’t have a lot of time and didn’t want to spend $$$, so we only took a Friday off. Drove up that day and stayed at a Holiday Inn Express out by O’Hare. It was a new facility and very clean and family-friendly, so we were happy. 

We spent the day with our friends - putzed around their area and avoided downtown Chicago due to the marathon being Sunday - ! 

It was so nice spending time with them - it’s always easy to pick right up where we left off. I’m so happy their family is complete now! 

Fall Photos

Busy life means lagging in posts... 

We had our annual Family Cabin weekend a town over with our friends. We’ve had this fun tradition since Nora was just one! 

Stu and Hannah are only two weeks apart!

Milford had three days of fall break. One day they went to the zoo with the sitter: 

One day was spent at Grammy’s house - Grandpa took advantage of naptime : ) 

And fall temps finally arrived - we literally went from A/C to heat in one week. I hurriedly had to swap out clothes in closets in one weekend! 

Wednesday, October 17, 2018

New Nike Runner

Another video you can’t NOT tear up at. Nike signed Oregon runner Justin Gallegos to a contract for three years - the first runner signed with Cerebral Palsy! Glad Nike saw the potential in Justin and that he’s just as capable as typical athletes! 

Justin Gallegos