The Journey of James Weston

Friday, February 10th, 2023 Today James got a new guitar from Juju! This way he has one wherever he goes. James was very happy to see everyone especially Tommy and Champ. James had no hesitation to pet Champ, however with Tommy he's still a little cautious. We think it's because Tommy also gives off a hesitant energy. Every time James sees the dogs though he gets more and more comfortable. We didn't do much today since yesterday took most of our energy. Mom just confirmed James' appointments for the upcoming week. James has first dentist appointment and an appointment at the hospital with motion analysis for possible PT equipment. James joined us for dinner while he stacked colorful cups. He is obsessed with stacking and lining up everything now! In the late evening Champ wasn't feeling well and had to been giving seizure medicine a few times. He has been struggling with his health. 😥 P.S. You can email James your love and support as often as you’d like. Mom and Da...

Thursday, February 9th, 2023 🤕 Again, James had 25 sensors attached to his head, face, and chest. They monitored his brain waves, oxygen levels, heart rate and breathing as well as eye and leg movements while he slept off the ventilator. We have no idea what these results will show. On one hand, Mom had to suction him throughout the night from 10pm until 5am, which we normally don't have to do. (Mom did not sleep, but James was able to sleep through everything.) On the other hand, he did not need any oxygen last night. 🤷🏻‍♀️ This is the longest he has been off the ventilator and just on an HME; a whole day and a half! Both our pulmonologist and our ENT let us know that they don't rely on the sleep studies to provide very accurate information. These two doctors have always been up on the latest research and studies have found that sometimes the results will come back saying there's a sleep obstruction, which ironically sometimes is just the trach itself. 😂 We won't h...

Wednesday, February 8th, 2023 James had early intervention therapy at 11:30am and then took a good nap from 1pm to 3pm. After that we video chatted with Juju, Aunt Robin, Champ, and Tommy. We needed to be at the hospital at 8pm so we started a bath and trach around 6:30pm. James also needed his pulmicort nebulizer treatment completed so we put him on the vent for 15 minutes to administer. Of course we were rushing out the door! 🏥 We were planning on Dad coming in just for the setup and then going back home. However when we arrived there was a queen size bed in the room so Dad stayed the night as well. This was the first time being back at the hospital where James was born and where we lived for 6 months. The NICU is separate from the PICU at St. Joseph's. These used to be two separate hospitals but recently merged. This time we were on the 4th floor of the NICU. It was pretty empty and quiet. James had 25 sensors attached to his head, face, and chest. They monitored his brain wave...

Tuesday, February 7th, 2023 In the morning, Mom called ENT to try and reschedule our next appointment. We didn't want to wait 6 weeks to discuss sleep study results. She had to leave a message. We had physical therapy in the afternoon. Tomorrow night he would have his sleep study at the hospital. The only pictures that Mom could get today were ones of him watching something on the tablet. He is so active it is nearly impossible to capture any photos or video while Mom is chasing after him as he scoots away or doing his care. He thought it was funny today that when the tablet turned off he thought he just couldn't see it and put his eye right up to the glass. Don't worry his vision is fine. 😂 Mom did get a call after 6pm from the hospital just verifying that we would be there tomorrow for his sleep study and asking if we had any questions. The questions that Mom had where regarding his medications and nebulizer treatments. Basically we needed to have all of that done at hom...

Monday, February 6th, 2023 The morning started out with James pulling Mom's necklace off her neck and breaking the chain. 😥 It was a necklace that Mom had bought online while in the NICU with James' on it and a little rainbow because James is a Rainbow Baby. 🌈  James and Mom worked on coloring while Dad was out for the day. James wanted to put the crayons 🖍️ in a row and then into the cup holder on the tray. He was more interested in the crayons themselves than actually coloring. He did make some marks and we are improving! Mom scheduled two doctor's appointments, filled out the sleep study paperwork, and submitted the police report requested by our landlord. Then we put in a late order for Instacart and had our worse experience yet. This guy couldn't find 50% of the items. The problem with Instacart is they are just trying to get as many orders done as fast as they can and will substitute anything. Example below. 🤣 You expect service when you pay for it. Unfortunat...

Sunday, February 5th, 2023 James hung out with Mom for Dad's day off out of the house. We worked on standing and played with all of his toys! The video below is of James with his passy muir valve making a ton of noise babbling. James has been saying Mama since December but decided not to really do it for this video. One day we will get it recorded. Currently he says Mama, Dada, Bye-bye, and E-I E-I (but no "O"). James only speaks when asked and he has to really focus. We also have to clarify when we're asking him to speak with his mouth because he will just sign instead. James will sometimes get shy by just saying the first syllable of the word!  James actually stood up on his own from sitting in the chair! Sliding down off the chair himself! Oh this is what the loop is for! 😂 James showed Mom all the different colors! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesW...