Today we took Gavin to Children's Hospital for his first visit with his hearing team. The hearing team consists of an ENT doctor, social worker, Audiologist, case manager, and speech therapist. We will be meeting with this same team every 3 months from here on out, and then additionally with some of the members individually (Audiology & speech therapy) on a monthly basis, which will eventually turn into weekly by 9 months. Along with these appointments, we also have started monthly home visits from an intervention specialist with Help Me Grow as well as monthly home visits from a parent advocate with the Regional Infant Hearing program (RIP). So managing Gavin's schedule has become a full-time job and I'm thinking about hiring a personal assistant for him to help me keep it all straight.
We switched ENT doctor's after our initial visit in July based on the recommendation of several people, as well as my strong dislike of doctor #1 and I am so glad we did. The doctor we met with today was kind and patient with us, even as I drilled him with my long list of questions and concerns. He sat down (imagine that!) and didn't even interrupt me mid-sentence, which was very refreshing. We met with all the other members of the team after him, who gave us helpful tips on interacting and parenting Gavin in ways that will give him the most benefit with his hearing.
Basically, we are in a watching and waiting period with Gavin. Because he is only 3 months old and will mimic the vocalization and developmental skills of normally hearing babies up until 6 months, our goal right now is to give him as much exposure to sound as possible-even though we have no idea how much he is actually hearing. The more consistent we are with keeping his hearing aids on during waking hours, (despite their inconvenience and challenges), the more exposure the speech and language centers of his brain will have and the better chances he has of developing normal communication skills as he grows. When Gavin is between 6-9 months old and can sit on our lap unassisted and has good head control, we will be able to have his hearing tested much more accurately in a sound booth and will know how much benefit he is getting from the aids. And although I never wish for my babies to grow up quickly, I am anxious for this time to come so that we will actually know something.
Gavin will also be scheduled for a CT scan and genetic marker blood test in the next couple of weeks in order for the Doc to *hopefully* be able to determine the cause of his hearing loss. It wont change the course of treatment for him at this point, but its something that we just really need to know for our own peace of mind.
And while we wait, we continue to pray healing over Gavin daily. Our hearts long for the day when God opens up his ears and restores our son to perfect health. Because no matter how big this all seems, our God is still bigger. Much, much bigger.
So that is the latest of the happenings with our sweet boy. Are you worn out yet?