The Journey of James Weston

James is now up to 1 hour twice a day off the ventilator! Let me tell you it is one of the best feelings in the world once these ventilator dependent kiddos get to trial off the the vent (called "sprinting"). Since James was born we've been very adamant about making sure he wasn't disconnected for very long and tried to avoid it if it wasn't necessary. We already had to disconnect him for trach changes, putting his circuit under the crib railing, placing him inside his pack and play, taking his T-shirt off, and cleaning his ballard. We are talking about disconnecting James for a matter of seconds because any longer than that the ventilator beeps and then whistles like a train that sounds a shiver down your spine letting you know that you need to connect him immediately. The sound is also specific to the LTV ventilator. Over this past year, there were times in the middle of the night when pitch black that James's circuit would become disconnected. I would screa...

Monday, October 31st, 2022 James had an eye appointment in the morning. He's lost appointment with the pediatric ophthalmologist was in January. We were scheduled to see her in May but had to reschedule and then with COVID and several trach infections we ended up just canceling to reschedule it a later date. To be honest we haven't been eye patching ss much as we should. Having James where the helmet this summer was really hard to also do eye patching. 👀 When we arrived the lobby was packed. We waited 30 minutes for us to be called back. Then we were seen by her assistant. She says, "Oh that's such a cool sound machine, what is that white noise?". We replied, "No that is his ventilator". 🙄 Does anyone look at a chart before they talk to a patient? The assistant went over all of the regular things like height, weight, and changes to medication. Then she dilated James' eyes and how does go back out to the lobby to wait for another 30 minutes. But at ...

Sunday, October 30th, 2022 🍏🍎 Today was the first time we gave James an apple slice to try. He he actually ended up taking small little bites and mom is right there to monitor. But when he got that new texture in his mouth a little tiny pieces of apple he started gagging and wanted them out of his mouth immediately. We heard that it takes a while for babies to transition from just purees. 🤷🏻‍♀️ Next will be trying this little baby puffs. 🏀 In the evening, we added a basketball net to James crib temporarily. He quickly learned how to dunk and make baskets. It may be his favorite toy! 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

Saturday, October 29th, 2022 (Photos only) 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

Friday, October 28th, 2022 So yesterday we had Speech therapy, whoops! These days are all running together. It was the first time James had used a Passy Muir Valve off the vent. Previously James was using an in-line PMV. Again, these are allowing James to inhale through his trach but only allowing him to exhale through his nose and mouth. Below are the consult notes that were sent by the Speech Therapist afterwards. This is a brief summary and definitely doesn't encompass all of what James can do, just mainly a required document for the program. Successes: James continues to make vocalizations, He will make signs for more and toy. James enjoys eating and will stick his tongue out to taste food. He is able to use an open cup when assisted. When he was tired he waved good-bye. He will independently transfer supine to sitting and rotate in sitting to get a toy. Challenges: James continues to reach instead of point with 1 finger. He is not waving goodbye consistently. After eating his ...