Frankie just got done with his 2 hour car seat test. He did well up until the last minute of being in there. He got pissed! He's out now, sweaty from being all bundled up but he's hanging out with daddy and hopefully mellowing out soon. Poor guy!
They also tried to do his hearing test today. He was so not having that! They usually do it on the babies when they are much younger but since he was here forever they were just trying to do it now. The babies must be asleep when they do it because put two electrodes on their head and then they play noises and watch the way the brain reacts to it. Well, since Frankie is a "big boy" (especially compared to most of the babies here) he woke up and screamed! As soon as she left, he fell asleep and was silent again. He just does not enjoy being messed with! Can't say I blame the kid! We will have to do his hearing test at one of his follow up appointments and they will have to sedate him a little to do it (wish they didn't have to sedate him). We know that he can hear because he responds when talked to and if you slam something he jumps and such but they still have to do it.
We got all of his prescriptions from the pharmacy and we have surgical supplies for his O until they can deliver the rest of them. Tomorrow morning, sometime before noon, they will be delivering his oxygen tank to the house. This will be the large one that we will keep up in his room that we can fill the portable tanks off of. Sometime after noon, the therapists from the Home Care Co., will be delivering the portable tanks, the feeding pump and his monitor to the hospital and show us how to use them. They are similar to what we use now so it will be a quick learning process.
We will have follow up appointments frequently with cardiology, neonatology, and surgery.
Yesterday we met with two amazing people! Lauren and Lance. They will be having a baby within the next week and a half that has a giant O! It was so nice to meet other people, in this area that truly know exactly what we are going through! Lauren had to go through all the testing that I did and it was awesome to talk to her and meet her since we both knew how it felt to ride on the O roller coaster! We will be keeping in touch with them on their journey and we can all support each other! Frankie also met his great grandma Hogan yesterday! Very cool!
WASH YOUR HANDS!
Love to you all!
The video below is crazy legs DiFranco! He loves to kick and coo at his mobile!