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And then we went to pick up Garrett's developmental therapist for a day of appointments and learning and fun!
First stop was to a new neurologist, and he was great! I mean that he listened, was very respectful, insightful, and even talked like he knew quite a bit about mitochondrial disease, though seems like he wasn't so up on Garrett's type. He will be now, I bet! He examined Garrett and noted he has mildly decreased tone, but he was overall happy with his physical little self. Garrett weighed 45 pounds today, and that's super! He is 46 inches tall. He is really starting to get taller very fast. Most of the appointment was the neurologist getting to know Garrett, and then we really focused in on his behavioral issues and the meds he is on. I must add that every time we started talking about Garrett's ticks, the neurologist started doing this tick involving his eyes. At first, I thought the doctor was messing with me, but he WASN'T!!! For THE FIRST TIME EVER, I kept my mouth shut! He says he wants one doc only to deal with these mental meds, but he feels they are safe but the dosages need to be bumped up one at a time to try to help Garrett out. He also said the Risperdol will eventually not work at all, but should be able to be adjusted up some to help with Garrett's ticks and repetitive behaviors. He also said it can cause even males to get breasts and LACTATE.....THAT IS WEIRD!! Not seeing that yet!! Said he would gladly manage the meds, but not until I speak with Garrett's developmental pediatrician on Monday. This new neurologist is they type doctor I prefer as he was thorough, thoughtful, and answered all the little things I thought to ask without rushing us. And he was great with Garrett. I asked to have him be our permanent neuro here in Boise. Looks like he is here one week per month and the rest of the time in Twin Falls. At least seems like he is more available for med help and such than the developmental pediatrician. That's good. He also wrote for Garrett to have an in-hospital, 24 hour EEG that will also be video taped. He wants us pressing a button each time we see an "event," so if it isn't seizures, they can correlate the button-pushing to the data and the video and we can rule it out if possible. Scheduling will call us tomorrow to arrange soon so we have the report and disc before our December Mito appointment in Seattle. Neuro also said Garrett's sleep study was pretty great....that's super!!!
Next was pulmonology. No concerns, and again he reviewed the sleep study from May again as well. We are cleared with him unless we have issues. Cross off one doc!! YAY!!
Garrett was pretty good today! He did have a blood draw we waited over an hour and a half for in the hospital, but he was only loud, not wild. We didn't take his service dog we are training......too much intensity, and I didn't want any distractions for ME today!! We finished the day with lunch at a restaurant with a playground and then to his weekly indoor play-time and developmental therapy time at an indoor play place called Jabbers.
Almost daily, Garrett gets "stuck" on one particular thing, phrase, or topic. Today's was particularly clever:
Garrett: Hey mom? Why do people say "see you later" when you don't see them later?