The tapestry of the life of a medically complex family

Archive for November, 2011

Happy Thanksgiving 2011



Thanksgiving Baking

This afternoon’s Specific Carbohydrate baking endeavor is Pumpkin Muffins made with coconut flour. Our house smells AMAZING! Cannot wait to frost them [farmer-cheese, honey & vanilla]. Thank you, Comfy Belly chef!

Here are the bakers!

A “Group” Activity

Today we rose early for a Saturday. We ran nebs early; we ran Vest CPT early; we finished breakfast at the time we typically BEGIN… I got a shower and took the time to straighten out the girls’ hairdos.

Clean & hair & dressed for the day

They looked GREAT!


Then we drove through Starbucks so Momma could get a coffee before driving the hour plus to our children’s hospital to join a music class run by our pulmonologist for ex-preemie NICU grads. We got there after the presentation & chat time [oops!] but in time to be seated before the music began.

At the start all 3 kids stared, unmoving, at the musician leading the group. They were older and more reserved than any other of the attendees- it’s been about 3 years since they have been in a group of children in a community setting. This particular setting is designed for kids to come when they are HEALTHY only, once a month. It is designed to be for kids younger than mine, but certainly my kids fit the group dynamics with their lack of experience in the setting. By the end, the girls were trying to sing a bit and playing musical instruments along with the singer. Tav even chose an instrument to hold while staring- for him, stellar participation.

My kids’ pulmonologist recommended we attend- and he is encouraging us to continue coming. He runs the group on a Saturday and my kids have spoken of little else since we got home. Looks like we may have to get started earlier so we arrive in time for his talk next month. I am so thankful to have caring and devoted doctors on my kids’ team who go above and beyond to address their needs as “whole children” who need special consideration when it comes to being in a group.

Balancing Oxygen Use & FUN!

Yesterday I figured out a way to attach Tav’s oxygen tank to his balance bike in a way that still allowed him to ride and have fun. I moved my car up on the driveway and we had a great time as the kids rode in circles and tested out their balance bike skills. I can’t wait to head to a bike path again soon- now that the weather is finally cool enough for my kids. 🙂 We took some picture to share with you all. ENJOY!

[we need to get back out on the driveway… gotta do trachcare]

This slideshow requires JavaScript.


Dress up

Today we pulled out the dress-up basket again. I had forgotten how much fun 4&5 year olds have with just a few costume pieces. Tav was so excited to see the new “Prince” costume & try it all on. Keva chose Eeyore & immediately began acting as the Prince & Princess’s pet. It was too cute for many words- but this photo captures some of it: