Bionic baby at home

Good evening or morning or afternoon, depending on when you read this; for me, it is good night after writing this. I am sorry I haven't written a post in a while but I have been drop dead tired pretty much every night since she has come home. Life is manageable but so very tiring. I think I've already fallen asleep twice writing this first paragraph (not kidding).
Brinley has now been home 6 days and 5 nights and we are still sane. Each day has gotten a bit easier on the whole as we adjust to the routines. Today she had her first set of appointments as we went to her pulmonologist, GI doctor and ENT specialist. Baby girl woke up with some eye boogers this morning (oh come on, you call it that too) and it turns out she's got a little conjunctivitis; her pulmonologist put her on some antibiotics so hopefully it will clear up in a couple days. So far she has only had one night where she decided to be up for half the night so all in all not a bad ratio. Sarah and my sleep is also improving as we get a handle on all her alarms and learn how to prevent false alarms from waking us up.
Since it is late and I'm likely to fall asleep again soon I will sum up a few points as bullets:

• She did not have her CF sweat test yet. It will happen on another trip to the pulmonologist but he is not concerned about her having it since she doesn't exhibit any signs yet (this doesn't mean she is free and clear of course)
• She is not eligible for botox to be used for limiting her secretions. The minimum weight they go by is about 22 pounds, more than twice her weight and botox is a neurotoxin so we'll trust them on this one :) We'll instead be trying to decrease her robinul dose to just once a day instead of twice and see how she does. The balance is minimizing the eye movement side effect with having it be effective at limiting her secretions.
• She's getting quite chubby.
• We got to skype in on Sam and Olivia's wedding!
• We took Brinley and the girls to my brother Robbie's soccer game and spent the day at my parents' house on Father's day. Brin slept through pretty much all of it.
• She also slept ALL day today. She was awake a total of maybe an hour until about 10. Now she won't go to sleep. Go figure.
• God is good!
• I had planned to start back at work today but her appointments took far longer than planned. I will try again tomorrow.
• I love my wife!
• I will soon do another video post, hopefully showing some of Brinley's equipment and how it's used.
• I need a vacation.
• My wife needs a vacation.
• I still have my sense of humor.
• Having four girls is fun and exhausting at the same time. I highly recommend and strongly discourage it.
• I can tell Brin isn't sleeping because I can see her heart rate. It's about 160. No faking me kiddo. Get that rate down to 130 or else!
• We actually are getting a vacation in July. Very much looking forward to it.
• My neighbor mowed our lawn again. Thank you Rich, you're a blessing!
• Still waiting on Medicaid so we can get nursing care set up.
• The big girls had fun playing in the rain and mud.