We had a visit from Dr. Park (ENT) for hearing and he said we should get the MRI of Charlie’s cochlea this Friday when we do the brain CT (for neurosurgery). He also said that if the MRI does not show ossification then there is not as big of a rush for the implants. He said that some hearing can return in the first 6-12 months. So it’s a hard decision to make. Do we give him time to recover as much hearing as possible over the next few months and chance ossification or do we start the process of implants? The implant process can take a couple months to go through all the steps. He recommended we contact the Department of Health and borrow some hearing aids to try so they can retest his hearing to see if simple amplification changes the results. Gather as much information as possible with the MRI, hearing tests, hearing aids etc and make an appointment with Dr Warren to discuss implants in the next month or two. If the MRI results show ossification we will need to make decisions sooner.
Dr. Such-Nibar made some adjustments to medication scheduling today so hopefully he will sleep more during the night and awake more during the day. Rob will find out tonight if it works. We had a second session of PT today with Janine and Charlie was very sleepy and fell asleep in every position he was in.
Sleeping through his workout
Exhausted!
Still sleeping...
We had a visit from Dr. Park (ENT) for hearing and he said we should get the MRI of Charlie’s cochlea this Friday when we do the brain CT (for neurosurgery). He also said that if the MRI does not show ossification then there is not as big of a rush for the implants. He said that some hearing can return in the first 6-12 months. So it’s a hard decision to make. Do we give him time to recover as much hearing as possible over the next few months and chance ossification or do we start the process of implants? The implant process can take a couple months to go through all the steps. He recommended we contact the Department of Health and borrow some hearing aids to try so they can retest his hearing to see if simple amplification changes the results. Gather as much information as possible with the MRI, hearing tests, hearing aids etc and make an appointment with Dr Warren to discuss implants in the next month or two. If the MRI results show ossification we will need to make decisions sooner.
Dr. Such-Nibar made some adjustments to medication scheduling today so hopefully he will sleep more during the night and awake more during the day. Rob will find out tonight if it works. We had a second session of PT today with Janine and Charlie was very sleepy and fell asleep in every position he was in. 
Sleeping through his workout
Exhausted!
6 comments:
Charlie,
Hang in there little guy. You have inspired us to hug and kiss our kids that much more every day. You are in our prayers.
He is working so hard. I want to sleep through my workouts! I hope he has a good night and his meds work better. Tough decisions on the hearing - so much information to gather. Charlie has some good pink to his cheeks, he looks great. I hope you get some sleep tonight, all of you.
Good Morning,Charlie and family: Have a grest week, buddy! keep working out!Ms.shyla
busy night. thats a lot of info to organize and sort of work out. is his only tether the feeding tube right now? What about the meds?
Meg- he is only connected to the pole by his feeding tube (that goes through his nose) His regular medication is given through that tube and digested in his stomach. He still has an IV port in his left arm that he recieves his "rescue meds" in to stop a storm (IV Ativan, IV Morphine).
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