The Journey of James Weston

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...

Saturday, February 4th, 2023 Mom had the day off to run errands like picking up our new kitchen chairs from Ikea. Juju bought us new kitchen chairs for Christmas since our old ones had a little too much duct tape (😂 the leather had ripped in several places). Mom and Dad put together the chairs following the swedish directions and only needed to take everything apart once. 😆 James spent the day with Dad watching Sunny Bunnies. 🤷🏻‍♀️ Thanks Dad. Video below. 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! JamesWestonAbramowitz@gmail.com

Friday, February 3rd, 2023 We had PT scheduled at the hospital at 9am. When we arrived at the valet parking, it was packed. Nine o'clock is probably the busiest time for appointments. There were 15 cars and only 1 person was working. We waited for 15 minutes just to park the car in a suitable spot to leave it unattended. By the time we went through security and got up total the 3rd floor we were definitely late. It turns out that the therapist left at 9:15am because she wasn't feeling well and assumed we weren't coming. Mom was told this by another therapist. These appointments were not worth the hassle for only 30 minutes. Mom let the other therapist know this. Even though it was a waste of time and it took 30 minutes just to pack up and get out of the house James was still in a good mood. Probably because we didn't have PT and were leaving! On a side note, it is shocking how many parents just drop off their kid. They don't even stick around to watch or learn anyth...