The Journey of James Weston

Thursday, January 27th, 2022 Our nurse who took off yesterday decided to work today. Basically she just works whenever she wants to and makes her own schedule. Don't know how you could work an office job and do this!  It doesn't matter how many toys are in front of him James will always be more interested in his pulse ox cord! 😂 James loves the color red! He really gravitates toward red toys.  So since we decided to wean the milk of magnesia James has been having small to non-existent stools. We are going to give him 3 days and then we may need to go back up again on the dosage. No appointments until next week. P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Wednesday, January 26th, 2022 Our nurse took off today so Mom was on for a stretch of 36 hours. 🥱 James had physical therapy in the afternoon and we worked on tummy time and getting into a seated position from the floor. He hasn't learned how to use his hands and arms to bear weight. Right now he just lifts up his head using his neck muscles. Our PT said they are typically 6 years old before they can just sit straight up without rolling to the side.  No response from our DME supplier yet on the new trach order. We can't wait until we are switch DMEs!  James loves games that are cause and effect. He doesn't know if he is doing something he's not supposed to and just sees our response as a game. So things like pulling on cords and tubing, attempting to rip out his G-tube, biting our hands... They are all a game to him because he sees that it gets our attention. We looked into the Lovevery and Montessori toys and will be trying to make DIY versions, because they are way o...

Tuesday, January 25th, 2022 Just cute photos today! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Monday, January 24th, 2022 Only time will tell! Nursing today, but no appointments though! James had a good day and Mom followed up on supply orders and insurance issues. Fun! 😊 In the evening, Mom handled the nightly care while Dad caught up on work. James' curls popped right back after she combed his hair! ➰ Praying 🙏🏻 He wants the phone. 🤳 So he can put it in his mouth. 😂 Nope! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Sunday, January 23rd, 2022 Fun Fact: James and Dad have the same hair in these photos. With the pulse ox cord it looks like James is playing an electric ukulele. Last night was Mom's night of the week to get a break from night shift. 😴 So that meant that Dad took care of the Sunday morning duties as well. Dad got in two full hours of eye patching bright and early! He also made more delicious protein pancakes. He can't believe how easy it is! 🥞 🎸In the early afternoon James did tummy time and had his first guitar and ukulele lesson with Dad while Mom played photographer. Later in the day, Juju and Cathy stopped by for a visit and brought over an authentic Polish meal. James even joined us at the kitchen table. 🇵🇱 🍽️ 🩸💉💊Side note - We received the results from his labs and we are discontinuing Calcium! So overall we are stopping calcium, milk of magnesia, erythromycin, and simethicone. This is such good news! Now all we have left is sodium chloride, melatonin, poly-vi-so...