1-2-17 Update

Tomorrow Oliver will finally have his upper GI study, which must be done for the placement of the g-tube later this week. We are hoping things can finally get moving.

Hospitals + Holidays = Waiting and Frustration

Don't get sick on Christmas Eve, or Christmas Day, or New Years Eve, or New Years. Seriously, just don't.

Smiling through it all

Today Oliver was more comfortable and enjoyed a few books when we could pry the ipad out of his hands.

Last night my in-laws came up and Andrew and I went out to grab a quick burger and a beer. It was so nice to get out of the hospital...and my pajama pants. We were thankful for their help, especially after hosting a house full of people for a week over Christmas (which we sadly missed).

Reading time with grandaddy

Today Ms. Pollock (Ollie's previous teacher) and Meredith (one of my friends in my Whine & Wine Club for mamas of special/medically fragile kids) drove up to visit. They brought smiles, ideas, laughter, food and so much joy. Oliver decided to eat and drink today, which was a good sign and maybe had something to do with our magical visitors.

The neurologist that came today said she thought we might want to consider the possibility of a Mitochondrial Disease. If this is what is causing his issues it would not be good news at all, but it would explain all the odd symptoms. Today while doing research I found this really interesting article about TSC's relationship to Mitochondrial Disease. In the event you have a PhD in molecular biology or can't sleep tonight, here is the link: "Impaired Mitochondrial Dynamics and Mitophagy in Neuronal Models of Tuberous Sclerosis Complex."

Trying to make sense of it all...and also a little artwork from Ollie's cousins, Will & Wyatt 

The biggest news of the day is that he peed in his diaper!!!! PRAISE THE LORD!!! We both thought we'd cry at the sight of it. This is incredible news, because the reality of doing the catheter 3 times a day is really uncomfortable for him and logistically overwhelming to us. He also did a bit of walking the halls today he has gotten weaker from being in the bed so much.

The thing we are most worried with tonight is that his low grade fever doesn't blossom into something more serious overnight. So we hope and pray and wait. Thank you for hanging with us.