Day 791 - James' 5th Haircut 💈 & Maybe Last Trach Change 🤷🏻♀️
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Wednesday, March 1st, 2023
We did eye patching in the morning since his eyes have been drifting lately. James tolerated it for several hours. 👁️
Today we had an early intervention at 12:45pm and unfortunately James was already asleep. He woke up right at the end of the hour of course. That hour was the only hour Mom had to get anything done. Maybe tomorrow... ⌛
James ran some errands with Mom and made his first trip to the post office. In the early evening James had a haircut scheduled. We wanted to make sure he looked fresh for his decannulation photos! This was at the salon that Mom had gone to a few times. The hair stylist was super nice knew a lot about James, since hair stylists are actually therapists. James did okay! 😂 He just really wanted to grab the scissors ✂️ James has a lot of hair!
🛁🫧🧼 We ended the night with a bath and trach change. We recorded the trach change since we were thinking it could be his last one. James always thinks we are going to tickle him when we get started. It makes it super hard to get into his neck. 😂 The last step James helps us by leaning all the way forward to give us access to the back on his neck. He makes it easy for us!
New haircut!
So serious!
Trach ties are off!
All done!
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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Great job, loved after the yoga posed James looked at the camera. Love, JuJu
ReplyDeleteHe loves the camera! ❤️
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