Life as a Leach

Tomorrow afternoon, Abby and I will be heading to our home away from home--RMH!  She has a pre-op appointment at 8:00 a.m. on Monday, followed by a long audiology appointment to get her hearing aid molds done and get some training on the hearing aids.  I'm happy that Abby will have a little time to enjoy RMH after appointments! Matt will come up Monday evening after taking Caleb to my parents' house.  Then, Abby's surgery to remove the hardware in her jaw will be bright and early on Tuesday morning.  The surgeon is being very noncommital about this hospital stay, based on Abby's shenanigans the last time!  We are hoping that it will only be a few days on a regular floor with no PICU stay, but who knows with Abby! During this surgery, the anesthesiologists will scope Abby to determine her airway status.  We are hopeful that she will go from a 4+ airway (no visibility and extremely difficult) to a 2 (partial visibility and mildly-moderately difficult). ...

This was just supposed to be a jaw surgery.  Abby would be intubated for 5 days to let the swelling go down, she would wake up, we would deal with pain, and then everything would be fine.  We would go home with our little girl and her fancy new jaw. PLOT TWIST!   Abby's neurological concerns are still there.  We have worked with OT and PT, as well as consulted with many doctors, and they all feel that inpatient rehab at Kennedy Krieger  is the best placement for her.  Our insurance company has already been trying to say she could get therapy at home, so the doctors are prepared to fight.  All my local friends know that there's nothing comparable to kki anywhere near us!  Neuro came in to do another exam this morning.  While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control.  She is also still drooling uncontrollably.  Plastics kept telling us it was from the surg...

Thank you for all of your concern yesterday!!!!  They finally figured out a cocktail that controlled both the pain and the vomiting...and I've written it all down for the next time!!  She is tolerating pedialite now and we will start feeds later today. Abby hadn't gotten sick since last evening, but she has also only slept when the Valium forces her to--so about 1.5 hours every 4 hours.  Otherwise, she's been staring into space.  :( Thankfully, she had a great OT session today.  She stood for about 20 minutes with just a little support, peeled stickers and reached up to put them on a piece of paper, and colored!  We were pleased with her progress.   She even attempted to write her name, which is no easy task when you have tremors! I've been working with her a lot on signing today.  I'm using either yes/no or stay/go to help her communicate, because those signs require limited movements.  Fine motor is not easy right now with the withdrawal, b...