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. 

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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. 


This photo is FALSE ADVERTISING.


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

Two Princes

Prince Harry and Meghan Markle had an extra-special visit with a boy in Australia who I think most of us are fairly certain has Down syndrome. Many women are very jealous he was able to get past security and touch Harry’s beard 😆

Very appropriate for Down syndrome awareness month in the U.S.!

The Boy and the Beard


Friday, October 5, 2018

Special Needs Spotlight: Hannah!

I’ve been following Miggy (real name Amy who lives in the Cincinnati area!) for a bit now – she’s a strong voice in the special needs community and I love her fervor. She reached out for volunteers for her Spotlight, I did, and she quickly responded for me to answer her questions!

I’m very honored that we are featured, especially during Down syndrome Awareness month (October)!

Thank you Miggy!

Special Needs Spotlight: Hannah

Tuesday, October 2, 2018

Bittersweet Ending

Earlier this summer, a man - whose daughter has Ds and part of the DSAGC family - choked and died while eating dinner at home. It was incredibly heartbreaking as the mother stayed home with three children. 

Their story had a positive ending as Clete was an organ donor and saved John Mock’s life.

A bittersweet ending and glad to see Carrie is slowly healing.  

Monday, September 17, 2018

Meet Goldie 2.0

Goldie 2.0


Oh you don’t remember Goldie 1.0? You shouldn’t because she literally only lived half a day. 

I’ll back up. 

Nora has been relentlessly asking for a cat for damn near a year. You know we aren’t giving into that. However, she is clearly smart enough to adjust her request for a “simple” fish. We figured it would be easy and not too costly. Hm. 

Saturday we went to Petsmart. I asked questions and didn’t quite realize there was a bit of process to get your water conditioned and acclimate the fish from the store water to your tap water. Ergh. I’d prepped everything based on what I was told, even a follow-up call I made to Petsmart to make sure I was clear. 

Well, by the time Nora went to bed, Goldie 1.0 wasn’t looking too well. When Tim and I went to bed around 10:30, Goldie was a Floatie. Whoops. Poor Nora woke up at like 5:50am on Sunday to tell me she thought Goldie was dead. She was just a touch sad, seemed bummed only in a general sense. 

We took the fish back - because thank God they have a 14-day turnaround - and we got a new one free of charge. This new associate told me we had to ADD our tap water little by little to the fish bag to help it acclimate to our water. No one told me that the day before. 

So I was more cautious with Goldie 2.0. However, I also realized I didn’t look at the water conditioning cap dosages close enough. I basically put 5X too much conditioner in the water so poor Goldie 1.0 was probably shocked to death. 😖

I added clean water for Goldie 2.0 and she made it through the night and ate her breakfast right up - so I’m praying to the fish Gods to be gentler on Goldie 2.0. 

If she doesn’t last, I give up the fish baton to Tim and he said he’s moving to a Beta Fish because those are heartier. 

The End.

Potty Progress (?)

Tim ran out to get some items yesterday. Hannah said she had to go potty but pushed me out of the bathroom and closed the door. 😳

I’d heard she’d started this behavior last week when I was gone. I was nervous that she’d pee all over the floor or just go to town playing with toilet paper. 

I kept checking in with her and she’d growl back “No!” At one point she let me in and she was stark naked! AND there was poop in the toilet! Sooo... good? But then I started freaking out that I had to check if she’d wiped. 

She hadn’t. I flew around getting wet wipes before she sat down on a chair! Thank God I was speedy before THAT mess happened - !! 

But then the turd (har) refused to put on clothes for a good 20 minutes! I laid a kitchen towel below her chair just in case. 🙀

Regardless, I’m proud Hannah is gaining some autonomy with her potty skills!


Not Fall Yet

Sunday Nora wanted to “go somewhere” - she asks this every weekend. Our local farm, Shaw Farms, had just kicked off their Fall Festival, so even though it was knocking on 80˚ outside, we went in the morning. Not too hot, but definitely not fall weather. We’ll go back in October to actually enjoy some apple cider and hot chocolate. 

Hannah has been toting her little pumpkin around the house : ) 



Final Kitchen

I was in Denver for my annual work trip while the final grout went in - but I came home to our beautiful grown up kitchen! 😍

BEFORE

AFTER

Teaching Children About Disabilities

I’m behind the ball on this - I wanted to post closer to when school started. But it’s never too late to teach your kids about their peers who have disabilities and differences. 

I’ve found countless articles and posts online and on social media from other families that help navigate these conversations. I’m happy to answer questions and provide guidance!


One common point: It’s not enough to just “be nice.” Especially when young minds haven’t encountered differences before and have questions about wheelchairs, limb differences, atypical movements or sounds, leg braces, walkers, etc. Education is key to our children treating their disabled peers with dignity, kindness, and inclusion. 

- proximity is needed
- ask him/her to participate
- ask him/her to join the game
- be an includer
- be an inviter

It’s a basic human need to want to feel loved and included. 
Parents: Are you modeling this with your children? Who are YOU inviting into your circle?

The amazing advocate, Miggy, has some great guidelines to teach your children about disability

  1. Everyone is different
  2. Questions are okay, as long as they’re kind
  3. Find common ground
  4. People with disabilities are differently-abled
  5. Encourage your child to build a genuine friendship with someone differently-abled


This writer has cerebral palsy and gave these summarized tips:

  1. Explain that people with disabilities are like everyone else, but they might do things differently, in their own unique ways.
  2. Try to make it easier for children to understand by explaining the challenges people with disabilities may face in a way everyone can relate to. Just as someone needs to wear glasses to help them see, someone with a disability needs a walker to help them walk.
  3. Encourage children to include kids with disabilities in their activities.
  4. Explain that disabilities are not contagious.
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Earlier this year I was in the swim class changing room with another Mom and daughter across the benches from us. The little girl said “Hi Hannah!” and gave Hannah a wave. The girl told her Mom Hannah was in class with her. I felt my throat closing up out of gratitude and happiness; a peer saw Hannah as equal - she had no preconceived thoughts. I can only hope that her family keeps her pointed down a path of acceptance.





Friday, September 7, 2018

Literally No Rest for the Weary

We purposely kept Labor Day weekend quiet because things are not settling until mid-October at this point. 

This week has been a straight cluster. 

My Tuesday started horribly. I was tired from being up with Hannah. I was almost at work, at a stop sign in an alley. Woman in front of me was geared to take a right-hand turn. I looked left to see if any traffic was coming and pushed on the gas, assuming the woman had made her turn - she did not. I hit into her trail hitch and jacked up my passenger front fender. Still drivable, but definitely damaged my car and my mood. 




I had to leave early to get Hannah to her 4-year checkup. 2pm is an awkward time. Right before I left work I realized “Oh crud, she has vaccines!” Three to be exact. It was a little easier than Nora’s because Hannah cognitively didn’t quite understand what the tray of syringes next to her were about to cause her to lose her mind. Which she did - but Hannah gets over it fast. 

Wednesday Tim took Hannah to the follow-up appointment for the follow-up sleep study to her tonsillectomy and adenoidectomy. The bad news I feared came true: absolutely nothing changed. Her breathing is still shallow and stops breathing periodically. Our next step is an MRI/endoscopy to see if there is physical blockage in part of her anatomy (and possible future surgery). In December we will have a third sleep study to determine precisely what she’ll need for a CPAP machine. Yes, young children have CPAPs - a handful of Hannah’s peers already do. 

So ultimately, I felt crushed and defeated. I felt like by age four we could put all the physical challenges behind us. A new diagnosis was a blow. I went to the downstairs bathroom and cried out my frustration. 

Thankfully I have another friend whose son is Hannah’s age - and at the same school - who is going through the exact same thing. We’re both pissed that an MRI and endoscopy aren’t the first path for sleep apnea - we wasted time, money, energy, and a near two weeks of recovery - all for naught. 

Ultimately I know this will be for Hannah’s benefit and ours - better sleep for all. A CPAP isn’t for certain either - I imagine if some physical barrier is found, there could be a future surgery and bypass the CPAP? I just hate both ideas. 



Thursday there was a shooting close to where I used to work downtown Cincinnati. I believe there is a gun problem in this nation. I’m utterly sick of no action from the people who run this country. 

I’m also flying out Sunday morning for my annual work “inspiration” trip to Denver. I don’t feel guilty leaving my family, but I feel incredibly bad leaving Tim with a horrible sleeper. He will have no help tending to Hannah who is guaranteed to get up at least once in the middle of the night and then again sometime between 4:30am - 5:30am. He’s going to be a zombie and for that I feel terrible. 


Hannah with Ruby, another cutie at the babysitter’s.