Our First Discrimination.

It “only” took four years before we encountered what I think I consider discrimination against Hannah.

We’ve been searching for childcare for Hannah (that’s another post) and we were looking at local daycares. In-home has been great (more attention), but when your sitter or sitter’s child is sick, you have to scramble. Daycares are more reliable.

We tried Jellybean Junction in Milford and they were fairly open and willing. The director was a touch nervous about the student to teacher ratio; 14:1. Which did make Tim and I a bit nervous, too. BUT the Director was still open and willing to take Hannah in. 

We tried another option down the road, Youthland Academy. It had multiple locations in the Tri-State area. Tim spoke to the Milford Director who said she’d get back to us. The following day, the owner of the daycare, Sheila, called me and told me they could not accept Hannah. My skin started to prickle and I asked her “Why?”

She rambled for quite some time, claiming two main points: 1. That her teacher/student ration wouldn’t allow for extra eyes on Hannah and 2. That her preschool staff were under-experienced for a child with special needs. She said she was “only” a 1-star daycare and that it would be better for me to find a 2-to-3 star daycare. When she finished giving her reasons, I calmly but firmly told her it was in her best interest to get inclusive fast. Parents with children of special needs work too. 

Then I hung up the phone, shaking, and went to the bathroom at work to cry. It felt like our first true refusal based on Hannah’s diagnosis. I was so, so, mad. 

I posted this experience on our local community’s Ds Facebook page and multiple families chimed in that they had experienced similar refusals from this daycare - over the years. Unreal. 

One particular Mom who is super on top of the legal rights and policies gave me multiple organizations to file complaints - which I did. 

It’s 2019 and those with different abilities are able to work and participate. Get on board. We support those who support us.

Don’t mess with my Baby Cub. 

Supraglottoplasty

Supraglottoplasty: the removal of excess tissue in the airway.

The continuing journey of Hannah’s unexpected 2018 diagnosis...

Hannah had her surgery the Tuesday after MLK Day. It took about one hour. We met her in the ICU afterwards; she was sleeping with just some monitors on, an O2 cannula, and an IV port that was not attached to any IVs thank goodness. Dr. Shott felt optimistic about the surgery.

She was pretty peaceful and then I made the mistake of putting lip ointment on. I didn’t think it’d wake her up, but it did and she was a bear. Whoops. After some crying, she fell back asleep. I felt terrible. 

The afternoon was Hannah going in and out of sleep while some crying in between. We got some movies on and she settled a bit. She was drinking water fairly quickly afterwards... way better than the tonsillectomy. 

Tim spent the night with Hannah since I’d done the T&A overnight as well as the titration study nightmare. 

He of course did not get any sleep - how can you when nurses are in and out all night and useless monitors are going off? Argh! 

Hannah was eating by dinnertime and they were discharged super fast - out by 8am Wednesday morning! She was back at the sitter on Thursday. 

No, Hannah’s sleeping has not changed. But we will not know the “official” outcome until her next sleep study on March 15th. I still think her waking and coming into our room is behavioral or age. I’d rather try to manage that than have an unsuccessful surgery. 😕

Nora Updates

Some minor updates on the “typical” kid. 

1. At the start of the year, Nora started her own goal - she wants to stop sucking her thumb. She only sucks it when she’s tired - so really, she was only sucking her thumb in the AM and tucking in for the night. She drew up a chart. The first goal was 5 days = $5 toy. 10 days = $10 toy. Then a 15 day goal and a 25 day goal. 

She’s been doing very well for the most part, maybe one or two slides. 

Proud she set her own goal and working towards it!

2. Not sure everyone knew, Nora has lost ZERO teeth. She really wants to lose one like all her friends. 

Nora showed us that there’s an adult tooth coming in behind her lower center incisor! It’s starting to push the baby tooth out, so I have a feeling the dominoes will start falling!

Smart Cookie... Or Cracker

Just because Hannah can’t always communicate clearly or has delayed development doesn’t mean she’s unintelligent. She proved this over the holiday break on two separate occasions.

First, driving past McDonald’s, from the backseat, she yelled, “Fries!!” Don’t judge. 

Second, driving past Skyline, “Crackers!” 

Smart, savory girl!

Who Has Special Needs?

Sunday Nora asked to speak to me in private and took me into a hallway.

She looked at me and asked if she had special needs (cue melting hearts). I looked her in the eyes and said “No, you do not.” Nora asked if she uses a baby voice sometimes, if that meant she had special needs. I told her again, she does not. 

She said she thought I would know since she was in my belly. 

Before we wrapped, I assured her it was a great question and that she was welcome to ask Daddy and I any questions, at any time. 

What a hard concept for a seven year old to try and understand - what ARE special needs and how do you know if you have them? 

💓

Upper Airway (Apnea) Appointment:

We kicked off 2019 with an 8:15am follow-up to the hellish CPAP calibration. 

We weren’t seen until about 9am for our appointment. Sadly common for this department. Dr. Shott is actually the best of the best unfortunately, especially for kids with Ds. 

After viewing Hannah’s scope and seeing her poor toleration of the CPAP, Dr. Shott agreed we can move forward with the supraglottoplasty. 

The main reason for apnea is Hannah’s small mouth housing a regular-sized tongue. But the scope clearly shows excess tissue on the vestibular folds (is what I believe they showed us). The supraglottoplasty will remove excess tissue and hopefully alleviate some of this closure while sleeping. The procedure is 50/50 that it will ease the apnea. Hannah is measuring at 6 episodes an hour which is considered “moderate” apnea. 5 episodes is considered “mild” apnea. 

Tim and I are willing to do this procedure versus fighting a long battle with CPAP. It’s way easier than the T&A. One night inpatient and healed in about three days - versus 11-14 days with the T&A. 

Procedure is Jan 22nd (already!), follow up sleep study mid-March, follow-up to the sleep study is mid-May - ! That’s how in-demand and sought-after this department is. 

Wish us luck! 

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.

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.