First Full Day of Pre-K 🎒 🟰 Off of Oxygen!

Yesterday was James's first full day of Pre-K! For the past 2 months, James has only been able to do half days because of nap time; he required oxygen while sleeping. The great news is that James is now officially off oxygen completely! Also, we have worked with our GI team and the school nurses for them to be able to administer G-tube feeds at school, so he can stay a full day!

It's so important to take the time to celebrate the wins because with a medically complex kid, there is always something to be working on! 👍🏻 From ventilator weaning to stopping the ventilator completely, to scheduling decannulation, to getting the trach stoma closed, to graduating from a GJ to a G-tube, to getting off of oxygen... It feels never-ending! That is just the medical side of it. There are also those normal things like walking, talking, eating... James has done great with those as well and cognitively he is acing everything!

I recently saw a post from John Israel talking about perpetual discontentment that struck a chord with me. "Perpetual discontentment isn't a bad thing until... it prevents you from appreciating the life you've worked so hard to create." It's awesome to always be making progress, but if you're not acknowledging the accomplishments as they happen, then when? It can start to feel very heavy to always be thinking, "What's next?".

The last couple of weeks we've had such setbacks with tube feedings. Pretty horrible experiences with daily vomiting, trying different formulas, lots of tears, balancing medications, and changing feeding schedules every few days. We think we have finally found something that works, thanks to the wonderful world of FB medical moms who band together and advocate for our kids! 🙏🏻 A lot of times social media is just a share of a wonderland that isn't real, which tends to make people feel alone. This is why we share. Speaking on behalf of all medical parents, unsolicited advice from well-intended ignorance tends to be the last thing a parent needs. It is extremely complicated and every kid is so different. Needless to say, we've been feeling very frustrating and hopeless at times. So it's super important for us to keep reminding ourselves how much progress James has made just in the last year. 🙌🏻

AND... we have now switched our focus to getting James off of tube feedings! The last medical hurdle on this journey! We'll be working with a new virtual team separate from our GI doctor in Orlando and also completely out of pocket that is laser-focused on weaning. We are super excited to have our consultation call with this company tonight! 😁