We have a lot of stuff going on over the next week or so.
Thursday: Sleep-deprived EEG, Vision therapy
Friday: Hydrotherapy
Monday: Cerezyme treatment
Wednesday: PT, OT, BAER study
Thurday: Abdominal ultrasound, ENT appt, Speech therapy, Vision therapy
Friday: Hydrotherapy, Developmental therapy
I think out of all the days, next Thursday is going to be the most nerve-wracking. We have the abdominal ultrasound at 7:30 am downtown where they are going to measure Hannah’s liver and spleen to see where we are at one year after starting the Cerezyme treatments.
We also meet with Dr. Roy, Hannah’s ENT, right after the ultrasound at TCH. I’m anxious about this appointment, because I know the “trach” conversation is going to be brought up again. Thankfully, Hannah has not had any more gagging/breathing episodes since we took away her goldfish and cheerios.
But I told myself, when the day comes that Dr. Roy, Dr. B (Hannah’s pediatrician), and Dr. Goker-Alpan (NIH) all agree that it is time for Hannah to get a trach, then I will do it. In my heart, I just don’t believe we are there just yet, but admittedly I do see it coming in the future if Hannah’s sensitivities increase more.
My prayers are with you. You’re probably exhausted.
.-= Roly´s last blog ..Going back in time. =-.