The Journey of James Weston

Tuesday, December 14th, 2021 Today was the first time Juju was able to see what home health nursing is like. Our Tuesday nurse is great with James, always giving him attention and helping with PT. We deflated his cuff for an hour so that Juju could hear him make some noise but James did not want to talk. He still held great tidal volumes the whole time! James has been belly laughing so hard sometimes pausing the ventilator. Even though we can't hear him you can tell by the photos! Mom tried to get his liquid Calcium Carbonate refilled but if course there was an issue. So this is an OTC med, that you can't buy over the counter. 🤷🏻‍♀️ So insurance won't cover it, in fact they're asking for much higher price then the over the counter price. Our local Publix is so good, much better than CVS in Mom's opinion. They immediately saw that we were going to get overcharged and decided to give us the prescription for the OTC cost instead which was $12 vs $90. They are going t...

Monday, December 13th, 2021 James loved playing peek-a-boo with Juju. Check out the video below! He is really good with covering himself up and taking off the blanket as well. James gets so excited he has to be reminded to keep breathing.  We enjoyed a home made chicken pot pie 🥧 from Cathy and watched Die Hard on the wall projector 📽️. Our conclusion and unpopular opinion is that it should not be considered as a Christmas movie.  Always laughing and smiling! Trying out his new kicks!

Sunday, December 12th, 2021 Juju arrived in the afternoon. Unfortunately Aunt Robin wasn't feeling well so she stayed back with the dogs. 🐾 Hoping they can all make the trip for his birthday in 2 weeks! James had a relaxing bath. He is almost getting too big for this baby tub! The tricky part is we don't have a regular bathtub downstairs, just a walk-in shower. We will see! We have been adding baking soda to help with his diaper rash. His favorite part of the bath is getting wrapped up in a towel at the end!

Saturday, December 11th, 2021 Today our M, W, F nurse decided to get in some extra hours and work from 7:30am until 12:30pm. Mom and Dad wrapped Christmas presents. Normally we would go to Jacksonville for the holidays but we are not set up to travel overnight yet. Cardinals came to visit James at the window. James' new trick is shaking toys in the air to hear the rattle. Not just hitting them on the bed. You tend to notice every development being there 24/7. Tomorrow family comes into town.

Friday, December 10th, 2021 James had PT at 8am, but when she arrived at 8:15am James was not about it. We worked with him in his bed. Teaching him how to sit up and lie down on his own by rolling on his side and leaning on his arms.  Around 12:30am, Mom jumped up to the sound of the vent being disconnected. The loud train whistle started before the ventilator alarm even started beeping. She immediately grabbed his trach and started feeling each section until she felt something disconnected. There it was, she could feel the air swishing out at the end of the blue Tee adapter after the Y (you can see in the pictures). But the tubing was not there to reconnect. It had happened again. This time Mom was again in the dark and could not find the new mobile light. It's great because it holds a charge but it's also always in a different place because you can put it anywhere. Unfortunately Mom could not find it had to make a quick decision to not continue looking for it and to walk arou...

Thursday, December 9th, 2021 No nurse Thursday, is kinda a break for Mom. Kinda. Mom held James a lot, didn't have to worry about giving report, or keeping someone else entertained besides James. Although there's not much else you can do with no nurse because you're busy with feeds, meds, venting, therapy, eye patching. Once in awhile you're able to grab something to eat and maybe use the restroom (with the door open because you need to hear alarms). Oh yes. 🚨 🔊 Dad was able to step in a help during eye patching with a a few songs while he had a 20 minute break. If there is anyone good with guitar that knows the trick to playing nursery rhyme songs with the same chords please let us know. The woman at the hospital who did music therapy was really good at it. Mom put on a quick YouTube tutorial of silent Night basic guitar. Dad is a quick learner although trying to play new chords while reading lyrics is a little tricky! James is a great audience! 🎸 🎵 🎶 Mom confirme...

Wednesday, December 8th, 2021 It is hard to really appreciate how tiny micro-preemies are. If you are one of the 11+ Million families who have adopted an elf on the shelf, take a closer look at them tonight. Your elf is bigger than many micro-preemies. Your elf is about 11.42" long. With the hat the elf measures about 14" long. James was just 11.22" long. A couple of photos below show perspective. ❤ P.S. Dad is running a free 5-day virtual workshop next week for those that want to make 2022 their best year ever!  Mon, Dec 13th - Fri, Dec 17th 6:30pm-7:30pm EST You can check it out here: https://mikeabramowitz.com/yourbesty earever/

Tuesday, December 7th, 2021 As we picked out his nightly outfit, we hadn't noticed that the blanket laying on his crib was also the same pattern from the GAP. 😂 James did great with his new Tuesday nurse. She gets on the floor and plays with him. Even held him in her arms while sitting on the floor as he took a mid-day nap. We are continuing to eye patch for 1 hour a day. James is getting used to it and is tolerating it without a whole lot of bribery. What has been working is Dad playing guitar and singing his songs, frozen teething toys, Cocomelon, watching videos of himself, and sometimes Mom just holding his hands. P.S. Dad is running a free 5-day virtual workshop next week for those that want to make 2022 their best year ever!  Mon, Dec 13th - Fri, Dec 17th 6:30pm-7:30pm EST You can check it out here: https://mikeabramowitz.com/yourbestyearever/