The Journey of James Weston

Saturday, October 23rd, 2021 James received several packages today! He received a large box from Juju and Aunt Robin with Batman outfits and several custom hand dyed kimono shirts with his name on them. Keep an eye open for those! James was also given this adorable train footed sleeper from Juju's friend Paula, 3 new Halloween books from Great Aunt Joan, and night time book from Cousin Amber! What a day! James got to meet his Cousin Makenzie but we forgot to take any photos. Mom and Dad handled trach care in the evening because of no nurses on Saturdays yet. His new favorite stuffed animal is a lion 🦁 that Dad bought in Vegas for James. It is super soft and James loves to pet it. Suction tubing is still working as a great teething toy for James! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so...

Friday, October 22nd, 2021 Today Dad handled trach care with our Day Nurse while Mom was out. The nurse allowed Dad to get work done and he saw that she was always with James whenever he stepped into the room.  P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Thursday, October 21st, 2021 James is getting so big! He loves bouncing! Sometimes we need to distract him from pulling on other tubing by giving him suction tubing. This tubing is now a designated teething toy. Cousin Amber came from Oklahoma to visit Mom and she met Baby James! She witnessed the trach change performed by Mom and Dad. We asked the nurse to help us hold his arms down, since now he likes to grab everything.  P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Wednesday, October 20th, 2021 James has starting rolling over. He is now in 12 month onesies mainly for the width! Mom took this picture sitting down, holding James, from inside the house. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Tuesday, October 19th, 2021 We had our endocrine appointment today regarding James' rickets. Wanted to get labs to determine what medications and supplements he needs. It took an hour, and 4 sticks to finally get some blood. We even had the IV team called in but they had a hard time. Blood was all over Mom's hands as she helped get the viles ready while they held him down. James watches Aladdin for the first time! James fell asleep waiting to get his labs. Watching Aladdin! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Monday, October 18th, 2021 Mom and our M, TH, F nurse got James sitting up and doing some tummy time. We need him to build up his neck and core strength. Dad left for Vegas early in the morning. A company trip based on sales performance. This was also the first night Mom handled James alone. Mom did trach care early before the day shift nurse left instead of at night. Although the nurses all say they are comfortable with trach care it turns out that they are not comfortable with James being a baby. Surprise! Yes, it is different than doing Trach care on an adult or and immobile person. He does not have a neck and will squirm. The nurse suggested and that James be asleep, because it would be much easier for her. Hilarious. Because as soon as you start pulling at his neck, he wakes up of course. Mom is starting to question why we even have nurses. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singi...

Sunday, October 17th, 2021 Mom spent the day training our new nurse who would be coming on Sundays and eventually Saturdays too. It takes about 3 weeks of training to get the nurses in a spot where Mom doesn't need to babysit and hold their hand. This nurse seems like she will be a great fit because she has had experience with babies.  Dad spent the day out with the boys while James chilled at the house for the nurse training. Lots of naps on Mom's lap and Cocomelon. James is starting to wiggle and move around the crib. We can't wait until physical therapy starts. Early steps has taken months to get setup. It's kinda ridiculous. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so ...

Saturday, October 16th, 2021 No nurse Saturday, but a welcome break! We received our monthly shipment of respiratory supplies from our Respiratory DME in Melbourne, FL. We were missing 8 major things and received an item that wasn't ours that we are required to return. Good thing we check the order. 😂 So Mom had the pleasure of making several phone calls, going line item by line item to get this corrected with our supplier.  Dad had a few friends in town for the weekend. Uncle Doug and Uncle Patrick were able to meet James for the first time. After a long day on the water jet skiing they came back with dinner and James was able to join them in his high chair. Uncle Doug beat everyone in cards while Uncle Patrick found our massage chair upstairs. ☺️  Mom and James enjoyed the day watching Tangled, which for being in the hospital so long is a lot like being trapped in a tower from the outside world. James loves his Disney songs!  Mom bought James with window bird feeder si...