The Journey of James Weston

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...

Saturday, December 18th, 2021 James is obsessed with grabbing his feet and touching his toes. In the evening, James sat at the kitchen table with Mom and Dad for dinner. We are trying to get him out of his bed or sitting up whenever he is not sleeping or napping. It's not only important for his development but for his core strength and to improve his flat spot on the back of his head. At our next pediatrician appointment we will be inquiring about a helmet. 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...

Friday, December 17th, 2021 This cover photo is of James waking up after a nap. He always wakes up smiling! 😁 😊 We tried a new position with the boppy to support James sitting up. His move is to typically squirm his way flat onto the bed. Instead we had him wear it like a pool floaty. We had Physical Therapy in the morning. This was Dad's first time working with the Physical Therapist and James. During this time, Mom had an interview over the phone to try and get approved for assistance with GI costs. Well if you make over $45K for the total household you cannot get any help. We did not get approved. Next step will be to speak with the Doctor about insurance codes. Fun! We did get some good news regarding insurance coverage, finally! Yesterday our RT stopped by to do her monthly vent check and Mom reminded her of all of the things that we are still waiting for approval on. She said she would try and see what information she could get and help nudge things along since she works fo...

Thursday, December 16th, 2021 Continuing to do 1 hour of eye patching a day. It's a struggle but we get it done. We pull out all the stops as far as distractions! Mom managed to get through another day with no nursing, handling both day and night shifts. We found out from being in the hospital that it's only possible to do about 6 days of that until the body begs for more sleep. It's also a dangerous situation when someone always need to have their eyes on James 24/7. James is really mastering his bouncer. The bigger he gets, the easier it is for him to touch the ground. He loves to grab and hit anything near him. So we'll have to be careful with our Chihuahua Tommy. 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...