Day 650 - Bouncing Balls 🏀 & Returned Calls 📞

Tuesday, October 11th, 2022

Since we were still waiting for James' sprinting schedule, yesterday Mom reached out to a lot of other trach moms on Facebook to see what others had done and what worked for their baby. Unfortunately a lot of these schedules were all over the place. Ranging from people only increasing trials off the vent by 10 minutes a week to those just taking their babies off the vent until they struggled. Mom wasn't thinking of something in between.  

So Mom started the morning by calling the pulmonologist's office around 9:30am. She spoke with a receptionist and let them know that we were waiting to hear back from the nurse practitioner on several things (see yesterday's blog post). Four hours later we heard back from the NP. She said that we will be increasing our event trials from 30 minutes 2x/day to 45 minutes 2x/day. We will do 45 minutes for 2 weeks and then increase to 1 hour for 2 weeks. Then we will be back in the pulmonologist office for more synagis shots and will get the next phase of the sprinting schedule then. She also let us know that the culture 🧫 showed bacteria 🦠 with a sensitivity to tobramycin so she was going to put in the order for James to receive the antibiotic every other month for 28 days 2x/day. 

We also heard back from the Complex Care Clinic (our pediatrician) and they informed Mom that we needed to schedule appointment to come in to be evaluated for the sacral dimple/tethered cord, so this wasn't going to be a phone call. We scheduled for tomorrow since this whole process seems to be taking a long time already and if we are possibly getting labs, ultrasounds, waiting on results, referrals, and/or medical records transferred we could be talking months. 

James played ball with Mom rolling but mainly bouncing the ball. He gets so excited when he gets a good bounce and understands the higher he lifts it the bigger the bounce! James stops the ball with his hands and feet and one time he even lifted with one hand while the other hand was behind (cover photo) as if he was about to make a basket.  🏀 Good form! James also took all the the puzzles off the shelf after our physical therapy session.

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