This week is flying by. Abigail didn’t sleep well last night due to withdrawal, so I only got about four hours of interrupted sleep. 

 

Overall, Abigail had a decent day today. She has been tolerating her feeds well. PT and OT came to work with her and said she is doing really well considering she just had such a big surgery. She’s still weak, but we are seeing progress every day. 

 

Speech therapy has been working with her since Monday, and she’s already making progress. I’ve also learned some new exercises to help her with communication. Boston has an incredible speech and communication center for kids with trachs, vocal cord issues, and those who are deaf or hard of hearing. It’s been really impressive to see, especially since our hospital back home doesn’t have those kinds of resources. Abigail will have some outpatient appointments in the communication center.

 

Music therapy came by this evening, and Abigail absolutely loved it. She loves singing, listening to music, playing instruments—anything music-related brings her so much joy. Early this morning, someone also came by to do crafts with Abigail and Gunnar, which Devin and I thought was special. Boston has many resources for inpatient kids. It’s been very eye-opening for both of us. 

 

Tomorrow, Abigail is scheduled to go back to the OR so the ENT surgeon can check her airway, see how it’s healing, and address anything that may need to be done. 

 

After a lot of prayer and consideration, Devin and I have decided to transfer most, if not all, of Abigail’s care to Boston. We truly feel like God has made it clear that this is where she needs to be to receive the care she deserves. 

 

Sometime in the next week, we’ll be meeting with ENT and the plastic surgeon to discuss next steps and what it will take for Abigail to eventually be decannulated.