Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! 😭😭😭 Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
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 dis...
James' first time at Disney World! 🛎️ Friday night we arrived at the hotel. We stayed at a Home2suites simply because they have a full size fridge with a freezer. It was our go-to hotel on our road trip and having that freezer instead of going to the front desk makes it so much easier when prepping his feeding pump. Explanation, of photo below, James thought it was hysterical when Dad would do push-ups! 😂 🌛 We knew that these would be late nights ahead so we rearranged his feeding schedule to be continuous overnight from 11pm ending around 1pm the next day. That way the majority of the day he only needed to get water. Unfortunately James was now having really bad constipation because of the formula change. This also came along with a painful diaper rash. 😖 James has never really had one before. We ended up at Walgreens buying water wipes, diaper cream, corn starch, and baking soda. We tried everything and what really helped was the baking soda in the bath and only using the cor...
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