Day 428 - Speech 🗣️ & Labs 💉

Thursday, March 3rd, 2022

We had a Speech Therapy appointment in the morning and then we did labs afterwards. 

🗣️ At the Speech Therapy appointment we got an order that it was okay to increase his trials to 2x a day for 3 minutes. We did a trial in the office and James cried again. 😭 This was the first time our nurse was able to hear him. She didn't really have anything to say about it. 🙄 We left the appointment with the understanding that we would be scheduling a swallow study. Yay! 🎉

🥼 Afterwards, we went upstairs in the same building to the lobby waiting. There is a kiosk for walk-in lab appointments. We signed James in and waited a long time. Finally someone came out to call James and Mom double checked to if the IV team had been requested (this had automatically happened the 3 times prior). The lady said that they were dealing with new staff and no one knew to request them and if we really wanted them it would be another hour. OR she said we could just try and get a finger prick since it was only one vial. Mom decided this was the better option than waiting another hour. We went to back to the lab and a woman checked out James veins, just to see, and she noticed he had a good one on his hand. She asked if she could draw from there instead of a finger prick since 1.) Those results are sometimes inaccurate 2.) It would really hurt him. Mom let her know that a lot of his veins had branched out from getting stuck so many times in the hospital, so the IV team always has trouble with drawing blood once the catheter is in. She reassured Mom that she wouldn't even be using a catheter and instead would just draw using a 25 gauge needle because this was only for 1 vial. Well that worked great! This was the first time ever that James didn't cry and we were done in just 1 stick! 💉🩸

When we arrived back home Mom spent a lot of time on the phone trying to follow up with the helmet people. We are getting the runaround again on whether or not insurance will pay for the $3K medical helmet. We decided that either way we want to give James the chance to have a round head. Even though this is only considered cosmetic. 

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...