Day 807 - St. Paddy's Day! ☘️ (Lots of cute photos! 📸)
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Friday, March 17th, 2023
Early in the morning Mom called and left a message for the PT at the hospital to let them know James still wasn't feeling well and we wouldn't be coming in today. He had a fever and enjoyed playing with the thermometers. Then Mom contacted the new GI office to see if they had received the transfer of our medical records from our current GI office. They said they were behind on getting them into the systems and we're currently 1½ weeks out, so they probably hadn't gotten to them yet. Maybe it's because they still use fax? 🤷🏻♀️ So we weren't positive they were even transferred over, we just had to wait until next week to follow up again. Yay!
We had him on the HME for the majority of the day but put him back on the vent at night. Low fever, diarrhea, and lots of suctioning of his nose are the main symptoms. Ever since we were in the ER we went back to only feeding him water in his G-tube. So that extra 1½ hours that we were trying formula we figured he probably needed the water instead. We are doing a rate of 50ml over 1½ hours (75ml dose). One thing at a time! Currently our focus is James getting back to his baseline before changing any feeding variables.
Pointing! 👉
St. Paddy's Day! ☘️
Taking his temperature
Dad singing
P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com
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...
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!
Ella at 4, 5, and 6 months (and some extras)! Wow time is flying by because in 2 weeks she'll already be 7 months! 😱 She is such an easy baby! I don't mean because there isn't medical stuff because James was soo good too. Ella is just so chill. She can hang. Always smiley and content. Currently she has been making James laugh so hard! It is the best thing ever and one of these days I'll get it on video. James continues to be so sweet with her and I'd love for this to last forever!🤞🏻🤣 Soo much to update! Life has been great! If I ever find some time I would love to! ✌🏻❤️
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