The Journey of James Weston

Friday, December 24th, 2021 Today our family suffered a devastating loss. James' Aunt Vangie, a devoted wife and loving mother of 2 young boys 13 & 17. Aunt Vangie received her wings on Christmas Eve and left a legacy behind that touched many people. We will all do our part to embody her strength and moral courage as she attacked her battle with cancer like a champion. She never retreated. She never complained. Most importantly, she never lost her faith. Just one week ago, the last thing we heard her say over the phone was, "Oh James has such beautiful eyes". She was always so loving with an infectious laugh. We'd like to think that she is meeting James now and looking over all of us. Our hearts break for her family. We have both experienced the loss of a parent as a young adult and we know there is nothing worse that the gut wrenching feeling of missing your mom or dad. The feeling that "it just doesn't make any sense" while you are looking for ans...

Thursday, December 23rd, 2021 James had a little photoshoot with Teddy from Cocomelon. No nursing today. Not much to report. James is getting more and more active everyday. Daily routine including the following: 1 hour of eye patching Sitting up or floor time whenever awake, including using the bouncer, a boppy, or pack and play mat 3 naps a day (30 minutes to 1.5 hours) Being held for at least 1 hour a day We've been adding in games and oral stimulation as well. Meds are given 5 times a day and feeds are every 4 hours. P.S. James' 1st Birthday is coming up! Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Wednesday, December 22nd, 2021 James wore his new red Burt's Bees onesie that Aunt Robin cricuted with, "Dont I look cute in Red?" Mom tried to nap in the morning once the nurse came. However with the vent and pulse alarms going off constantly it's quite literally impossible. James had physical therapy in the afternoon. We tried something new and disconnected his J-tube and G-tube extensions from his GJ button. This immediately allowed James to tolerate tummy time, so that must have really been hurting him. It is a good ½ inch of plastic pushing into an already sore area of the stomach. 😥 Mom made phone calls handling supply orders and getting medications refilled. To give you an example of the competence of some of the DME people "handling" our insurance denials...one stated, "I know the trach is being denied because it's custom, since it's made out of different custom materials". 🤯🤦🏻‍♀️ No, it's a custom length. This just validate...

Tuesday, December 21st, 2021 James had a busy morning of physical therapy, eye patching, and playing piano. In the afternoon someone who Dad works with came by to meet James since he was in town. He was fast asleep in our nurse's arms. 🥰 After a lot of chit chat James woke up just in time to say goodbye to our guest. In the evening we saw a new side to James. He was angry! He did not like that we put him in his bouncer so he banged his toys very aggressively making a lot of noise. James would not smile, even for Cocomelon. He was pissed we we're making him sit up all day. James would much rather lie down, because that is what he is used to.  James trying to explain to us why he should lay down instead. P.S. James' 1st Birthday is coming up! Wouldn't it be fun for James to read an email from you when he is older? What a treasure! His email is JamesWestonAbramowitz@gmail.com. How awesome to get his reply back in like 10 years...

Monday, December 20th, 2021 Mom bought James this plaid Christmas onesie in a size 9 months! 🤦🏻‍♀️ It looked really long in the legs but it's not snapping under his diaper. It's way too small! Getting it on felt like a scene from Tommy Boy. What's crazy is that some 12 month sizes in the same brand are getting really tight on him. And yet in another brand, they are huge! 🤷🏻‍♀️ The good thing is that James is growing! He gets measured and weighed at certain doctor's appointments but we can also tell just by his clothes getting a little tight. Especially in the torso. His legs and arms are still a little short. We need to schedule a follow up appointment with orthopedics and genetics. Yay co-pays in the new year! Mom called the DME today to try and get an update on the peer-to-peer review outcome on the trach. But of course no answers. Just a name of someone to chase down who might know something. Left a voicemail. We also followed up about being shorted some supplies...

Sunday, December 19th, 2021 This is the first time Mom has been able to hold James like this. He doesn't really like to be cuddled and it's common for trach G-Tube babies to not want to be in this position. Mom pulled James out of the bouncer and he was so tired that he let Mom hold him like this while he slept. So Mom asked Dad to take a photo and then she cried (without trying to wake James up), because it's taken almost a year to be able to hold James this close. We've had to stick to football/cradle holds. Bonding has been  hard... with him being "hands off" for months in the NICU, having a scheduled 30 minute window when we could put our hands in the incubator hoping he would hold our finger, the first hold being at 48 days, pretty much bed bound for the first 8.5 months of life, not being able to breastfeed or bottle feed, and taking on the role of nurse sometimes gets in the way of being a parent. We were only able to do skin to skin 3 times in the hosp...