We officially ran out of pain meds for Lillian last night. I gave her the last dose at like two or three this morning. The smell is still there. I did call the surgeon today just to check if that was normal and am waiting to hear back. She seems to be doing well overall except for the dreaded feeds. Ugh....it wears me down, seriously, I cannot even imagine the toll it has on her. I hate to puke...I cannot imagine puking EVERY SINGLE time I ate. blech
Interesting enough, got a letter in the mail today from Riley surgery notifying me that her surgeon would be out of town the week following her surgery and if that concerned us we should call their office to reschedule....are you kidding me??? I took this opportunity to call and tell them we were no longer in need of their service.
She is completely obsessed with going outside. She thinks she should be out there if anyone is out there. Let me tell you how much that annoys the girls. They have a little tolerance for messing with her outside, but it quickly runs into "their" time. I took little missy for a walk today and we went to see the goats, but they were not in the field. (friendliest bunch of goats you've ever seen)
Another new experience today, Lillian pulled the Wizard of Oz DVD out of a box and kept shaking it at me and pointing to the TV. I put it in, quite shocked bc she is really not too much a tv watcher. She did get interested in it, as much as a two year old is anyway. Then tonight, she did it to me again...I said are you serious??? She shook her head yes at me very slowly several times as if to say, did I stutter??? It was funny.
I spoke to a friend who is a speech path today and she told me that most kids have to have multiple surgeries on the palate....UGH.....that was depressing information. Sometimes I wish they would just tell us these things up front so I'm aware of it. So it doesn't feel like a bomb landing on me. I have felt like that many times with her. For instance, the time she had blood come out of her trach...I was buggin'. When I called they were like so nonchalant, oh yeah, that's normal. Don't you think you might ought to tell a parent, that someday blood may come out of her trach...it's not a big deal, it's expected...do they tell you that in training....NOOOOOOO.
I feel heavy hearted today. One day at a time...