The Journey of James Weston

Thursday, November 4th, 2021 Not a whole lot to update. We are open to recommendations for toys good for development. We are currently looking into an Activity Play Mat but there are soo many on Amazon. He definitely like interactive things that have cause and effect but we'd rather not give him an iPad or cell phone. Let us know if you come across anything that has worked for you! Mom just bought him some bibs because he has been drooling like crazy. How cute are these tie dye shirts from Aunt Robin?!

Wednesday, November 3rd, 2021 Today our M,TH,F nurse filled in for our T,W nurse since she requested off.  Mom has been trying to get James scheduled for an Opthalmology appointment. It's taken weeks. We were referred to an office in Palm Harbor which is like an hour away with traffic so we'll need to bring additional oxygen tanks. Even more considering is the battery life on the equipment (ventilator, pulse ox, suction machine, and feeding pump). Finally getting through to the office they said that we couldn't schedule with them (even though we were referred by our pediatrician) because we need to fax them a Newborn Pediatric Eye Consultation Record to proved he passed his ROP test in the NICU. They informed me to get that from his pediatrician. Mom calls the pediatrician office who says they don't have that and that we should call the Hospital ROP (retina of prematurity) NICU nurse. Mom calls her, she states that she does not have this but that Mom would need to reque...

Tuesday, November 2nd, 2021 Our Tues/Wed Nurse took the day off. Hey, no problem! Actually less work for Mom. 🥳 James had Baby Makenna and Baby Harper over for a "Ladies with Babies Day". 😆  Since Mom does night shift almost every night, Dad held James during a staff meeting Zoom so Mom could shower. James keeping his eye on the phone. 😂 He'll take you outside. 😆  Showing James where the camera is. James knows where the camera is! New pajamas from Uncle Doc DP! Keeping his eye on the camera! 10 month old, 4 month old, and a 2 month old! P.S. It only takes a few minutes! See the James Weston lullaby post for more details. ❤️

Monday, November 1st, 2021 Below is a video of James early in the morning. He wakes up super happy with smiles every morning. Today was James' first physical therapy appointment. She is really good and is pushing for us to get it 2x a week. The idea is that she is teaching Mom and the nurses (😆) how to work with him so we can implement physical therapy into his daily routine even when she's not there. We worked on tummy time which he is not a fan of, rolling from side to side, and sitting up but using his hands to lean. He has some good head control but not so much in the torso. That's why he needs tummy time.  Overall his health is good. We had the windows open for a few days to get some fresh air. James had some more secretions than normal, so he might have allergies. But it could also just be him teething too. No teeth yet, all gums still for now. Tomorrow James has his first play date (kinda 😆) and gets a visit from two other babies in the neighborhood. P.S. Hey you! ...

𝗤&𝗔 𝘄𝗶𝘁𝗵 𝗠𝗼𝗺 𝗼𝗻 𝗝𝗮𝗺𝗲𝘀 I decided to post some of the questions that friends and family have been asking about James. I've been told my answers helped them understand what's going on. Feel free to ask me anything! 😁 𝙒𝙝𝙖𝙩 𝙖𝙧𝙚 𝙩𝙝𝙚𝙮 𝙨𝙖𝙮𝙞𝙣𝙜 𝙖𝙗𝙤𝙪𝙩 𝙝𝙞𝙨 𝙗𝙧𝙚𝙖𝙩𝙝𝙞𝙣𝙜 𝙩𝙪𝙗𝙚? 𝙒𝙝𝙚𝙣 𝙘𝙖𝙣 𝙝𝙚 𝙜𝙚𝙩 𝙩𝙝𝙖𝙩 𝙤𝙪𝙩? James had to get a tracheostomy since he born so early (at 26 weeks) his lungs were barely developed yet. The ventilator kept him alive, but it also caused lung damage (makes really thick lung walls), which then caused him to stay on the ventilator, which again caused more lung damage. It's a catch 22.  Fun Fact: We develop more air sacs (alveoli) in our lungs as we grow (up to age eight). So everyday that James gets bigger and stronger, his lungs are also developing healthy parts too.  On average this takes about 2 years to get off the ventilator and 3 years to get decannulated (get the trach out). At that point Ja...

Sunday, October 31st, 2021 No nurse today again! It's a nice break! James went as a Teething Batman for Halloween, although he's been dressed since his Saturday night bath. Earlier in the day, we worked with him on the floor using our Pack N Play insert as a mat. James didn't tolerate for very long. He got pretty upset. It's super important that we watch the circuit while we are on the floor. Since James is technically down stream from the Humidifier, water can travel back down into his trach.  We ended up getting one group of teenage Trick or Treaters. As soon as they rung the door bell, James turned and looked at the door. He is very curious! 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 ...