The Journey of James Weston

Friday, July 29th, 2022 Today was the first time Mom drove James alone. We needed to get to a pre-admission covid testing at the hospital so that we could stay on schedule for the GJ replacement on Tuesday. Fairly simple drive-thru at the Children's Hospital. James did not like the covid test. Did you know that he has been tested 10 times since he has been born? Absolutely ridiculous. It burned his little nose and he went from all smiles at the nurse to silent crying. 😢 The nurse felt really bad so she came back with a toy for him. The trickiest part about loading up the car with all of James's equipment is lifting his car seat into the car while avoiding smashing the circuit. If the circuit is underneath the car seat when you are going to lock it in the base it will smash and James will be disconnected from the ventilator. Everything has to be put in in a certain order, and taken it out in the opposite order. So the solution is lifting the car seat with only your left hand an...

Thursday, July 28th, 2022 Today James played with a lot of different toys and took several naps. He read 2 new books today that actually kept his attention. The peek-a-boo books encourage interaction and helps with fine motor skills like pointing with one finger. ☝️ He can make things move! The other book is just photos of babies (and their emotions) and right now this is interesting to him. As you'll see in some of the last photos James is very intrigued by his Developmental Assessment Handbook.  We also were officially scheduled for a GJ replacement on Tuesday with Interventional Radiology. Finally!! Tomorrow Dad leaves to go out of town for a work conference. Mom will need to drive James by herself (for the first time) to his pre-admission Covid screening at the hospital. Tonight is out last night of his 2nd antibiotic, Cefdinir. James is awake are playing with a tag on a pillow. Very rare to see James on his stomach! James pulled himself underneath! Things only a trach baby can...

Wednesday, July 27th, 2022 James tried on his first pair of tennis shoes! Mom scored them at Target for $5 on clearance.   We started out using them during physical therapy which was around 12:30pm. What we're focusing on now is for James to bear weight through his legs. It's easiest for him to do this while he is sitting on someone's leg. With only a few exercises under his belt when we tried again in the afternoon he was already pushing up on his feet. The trick is he needs to be going after something he's really interested in. So Dad sat on the couch behind a bunch of medical equipment piled up on the table. In order for James to see him he needed to stand up, and he did. Now Mom is still currently needing to hold on to him, of course. We also practiced kneeling up to his chair. Since we never really accomplished tummy time James does not like to bear weight on his arms or hands, or use his neck to look up. So kneeling is the closest we are getting to tummy time for ...

Tuesday, July 26th, 2022 Today we had an emergency where the exhalation valve on his circuit broke. The bottom piece came off and the rubber part came out. The ventilator was alarming DISC/SENSE which is telling us that James was disconnected. While Mom was trying to fix the broken plastic piece which seemed like the fastest fix, she screamed for Dad to get the backup ventilator. He was in the middle of a call but he immediately stopped what he was doing. He ran out to the living room, grabbed the backup vent in the closet, disconnected it from the charger, and turned it on. Mom immediately connected James to the backup. We are not positive that James was really disconnected from the ventilator since it was the only the exhalation valve that was broken but it wasn't worth taking a chance. This is why it is extremely important to have a backup ventilator. If not, our other option would have been to just bag him while the other person would set up a new circuit on the ventilator. Dad...