Thursday, January 24, 2019

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!


Tuesday, January 8, 2019

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? 

💓


Wednesday, January 2, 2019

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!