I have a confession to make. I worry a lot about how Averi looks. I know a small part of it is just because I'm vain, but before you judge me, hear the other part. I'm not dumb - I know that as she gets older Averi will be made fun of because she is different (fact: kids are cruel). This will affect not only Averi but Kaili as well (who I'm sure will both defend her and question why she was given a special sister). The last thing Averi needs is crooked teeth, crossed eyes, or a big hearing aid strapped to her head to fuel the ridicule.
If I knew I could shelter her from the teasing, her appearance wouldn't worry me so much. Plus, it seems silly to worry about it right now when she is so small. Of course, don't get me wrong, I think she is one of the two most beautiful girls in the world and I absolutely love her just the way she is. If only she could walk around with a banner over her head explaining her story to everyone around her so that they could be informed before they judged.
Anyways, Averi is still holding on like a champ. On Tuesday, the doctor 'reminded' us that Averi had to have another bone marrow biopsy on day 14 of her treatment. Somehow we missed that crucial information in the 21 page packet they gave us. Dan immediately looked it up - the doctor was right and day 14 was yesterday.
I have never been worried about her having anesthesia before, but after she got pneumonia last time I was a little more nervous about it. Averi was supposed to go down to the OR at 8:00am, but it was pushed back to 9:00 and then to 2:00 in the afternoon. Of course Averi couldn't eat anything and was not too happy about the long wait. It wasn't until later that we found out that the night nurse had forgotten to turn off Averi's feed at midnight and hadn't done it until 1:00, pushing us back.
Besides making Averi really hungry and fussy, I was extra annoyed by this because the doctors said that she couldn't eat orally until a therapist came to do it (she has been on 24 hour feeds since coming back from the PICU) and someone was scheduled to come at 1:00pm. Now we were going to have to wait another day.
I realize that isn't normally a big deal, but we know from experience that Averi goes backward very quickly and it has been a week since she has taken anything by mouth. Luckily I convinced the doctor last night that I could feed her if the nurse was in the room. I gave her 2 ounces in her honey bear and she drank it like a pro. We are slowly trying to get her back up to her feeding schedule from home and she is doing really well tolerating the feeds.
In other good news, the doctors gave her a steroid immediately after the procedure so she's hardly had any noisy, labored breathing. She's been really mellow today but not too fussy so we are counting our blessings.