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. 

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.

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.