Seasons... a quick update

I'm sure you've noticed that we took a considerable break from the blog.

To every thing there is a season... and some are harder than others.  In the periods of waiting and watching, it is hard to provide updates.  We are well-settled into our routines now, but we still wait for answers from specialists.

Throwback Thursday

2016                                     2017                                     and           2018

Last month during our 2 day trip to Wichita, we saw the cardiologist, neurologist, pulmonologist, geneticist, and dietician.  We are hoping to have a sleep study scheduled soon and also got Lennon measured for a custom wheelchair.  These processes are slow-going.  There is a lot of waiting involved while insurance decides what and when they will cover treatments, tests, and equipment.  Meanwhile, we (parents, family, nurse, therapists etc) try to figure out how best to support him in the meantime.

December 5th, Lennon flew to Wichita for possible pneumonia.  Either he had it and the antibiotics knocked it out right away or what they saw on the chest x-ray was residual scar tissue from prior aspirations. Either way, he was doing much better after a couple of days, so we came home.

Tomorrow, we travel to Wichita again.  This time we will meet with the gastroenterologist and hopefully figure out what is going on with the vomiting and lack of bowel movements.  (Sorry if that's TMI.)  Later in the day, we will see Dr. Beltran (geneticist) and Dr. Welch (neurologist) for follow-up appointments.

In happy news:

1. A miniature family reunion is in the works... :)

2. It's Winter Break! (No school for mom or the big kids until January 7th.)

3. Lennon was nominated for a TinySuperheroes cape and has received enough donations to rush his order.  https://tinysuperheroes.com/squad-super-lennon-k/