Life these days seems to be surviving from one appointment till the next. Our days are marked by which doctor/therapist/specialist we are seeing that day.
To make things even more interesting, Caleb has been hacking up a lung (possibly two, but he seems to be compensating well) for the past week. Trying to keep him from "his baby" has proved to be difficult. This morning he stood at the top of the stairs and yelled, "I come down now! I'm all better now. No more more sickies." He then proceeded to cough for two minutes straight. Nice.
Charlotte is holding her own, quickly learning to ignore all of us and do her own thing. She is extremely entertained by the TV (so much for no screen time until she is two...) and loves the mirror. These activities reassure us that her eye sight is not as bad as the doctors had said was possible.
This week we've had two therapy appointments, one pediatrician appointment and a random nurse stopped by to see how we were doing. Considering we have nursing for 16 hours a day, I think the nurse visit was a bit excessive :) Despite the 16 hours/day of someone else "watching" her, I still feel like I'm always behind. For example, here's a list of her appointments for the next six weeks:
Surgery follow up from her G-tube/Nissen
ENT (Ear, Nose, Throat) follow up for a repeat scope w/ the airway clinic
Eye follow up from ROP
Feeding Clinic Evaluation
Repeat Swallow Study
Developmental Clinic @ CCH
Weekly sessions with Physical Therapists and Speech Therapists
Biweekly check ups with her pediatrician
So yeah, we're trying to find a rhythm. Charlotte will celebrate her eight month birthday next week. It's hard to believe how much has happened in such a "short" time. We love having her home, and can't believe that it was only a year ago that we were telling family that we were expecting.
Crazy, huh?
I bet her fascination with the TV comes from her realizing that there is so much more in the world than the NICU staffs!!!! She probably thought that there were only about 40 people in the entire world...but she is now big enough (and we know definitely smart enough) to have figured out there is a whole new world out there! And to that I say good for her!!! Hugs to all!!!
ReplyDeleteoh honey. i'm sending you lots of energy. :) you're great parents, keep it up!
ReplyDeleterandom, non-pep-talky-preemie-advice: keep tabs of all your mileage from appt to appt for your medical expenses come tax time.