Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! ๐ญ๐ญ๐ญ 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!
Friday, January 22nd Morning : James is tolerating his feed of 15 ML. Could use a bowel movement before 2pm, which will be 24 hours without one, or else they will be give James a suppository to help. His oxygen was at 47%, which is great progress. Amplitude at 30 and will get lowered to 29 today to see how James tolerates it. Pressure still at 15 until oxygen can get below 40%. Blood gas came back good. As of right now, James is doing well. He’s snuggled up nice and cozy today. . We also had someone make us a beautiful 3 week card with hand prints from James. ❤️ Evening: Baby James put on another 15g, now weighing in at 825g. He’s up to 16 ML of feed and tolerating it and will reach his max of 17 ML tonight, assuming he stays the course. His oxygen went down to 37% and amplitude down to 28. This is very great progress too. The suppository helped him with a large bowel movement, which it is common for these little babies to be slightly con...
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! ๐๐ป 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...
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