Facebook post from jenn on October 20th, 2021

We have had a BIG day. Julian has had his trach plugged for over a week and has been breathing great on his own with no need for suction so they took out the trach today. I’m nervous but also thrilled. It’s like a safety blanket being there and now it’s gone, but also so happy that my child is able to breathe completely on his own. Our PA, James (and both pulmonologists that work here) has been awesome since we arrived. They take the time to really sit with us and explain things and relate to Julian and I with compassion. James has seen Julian from the vent to now with no airway support. Cheryl, the counselor here, also has supported him throughout this process and was by his side for the trach removal to ease his anxiety. Cheryl has done double duty many days for the moms and dads here as well as the kids. Love her so much. This has definitely made me not take for granted the basic functions we take for granted. These major life changes greatly humbles a person. Lindsay, our OT, (pictured with Julian) has also been so supportive. I truly feel like they are doing their best to get motor function back for Julian. It seems so small to look at videos but he had zero muscle movement below neck when he was injured. Chris, his PT, also works daily with Julian. Lindsay and Chris are a good team and Julian loves them both! We were out in the hall after trach removed and so sweet to see some of our favorites cheer for his accomplishments today. There is also our schedule this week. Every week is different but all includes PT/OT daily with speech (works with airway and swallowing), school, and classes that help them learn about their injury, and sessions with assistive technology (which is amazing what is available to help him be more independent), some fun activities on Fridays and hopefully more outings in the community now that he doesn’t require extra support for an airway. I’m going to take today as a win, and we’ll keeping doing what we can. Pray for more positives to come, but we’ll never quit working .
Thank you again for all the calls, texts, mail, and messages. We sit and read each one and continuously overwhelmed with the support we have received! Forever grateful!!!!
-also so relieved my dad is ok today who went to ER yesterday with chest pain, had surgery this am for gallstones and is home recovering and doing much better! My heart can’t take much more excitement 

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