Alexandria had an “ok” day today, she did have two respiratory episodes, and a bunch of false alarms (sensor is giving us some issues on her foot). We have discovered that girls are “stealth pee-ers”. With the boys it was easy to know while changing a diaper if clothes/surrounding area needed cleaning because of the firehose effect, but with girls you don’t notice until it’s too late and you have to re-diaper, re-dress, and clean the blanket. I thought Kim was being silly when she mentioned that this happened to her yesterday (twice), however Alex stealth-peed a brand new outfit while I was getting her dressed this morning… still dunno how she pulled that off.
Gabriel is becoming more and more interested in Alexandria, wanting to know when she can play with him, why her eyes are always closed, why her hair sticks up, etc. She grabbed his finger with her hand today, which he thought was nice. No comments about the belly button today though, thankfully.
Pastor came by today to see how we were doing, prayed with us. We touched briefly on what the service would include, talked a bit about family that would be here when the time came. It was a good visit and good to see him. He and everyone from the church have been so supportive and we thank God for connecting us with them.
Alexandria’s pediatrician (Aden, Gabriel, and Ethan’s as well) called today and told Kim that he, “just couldn’t take it anymore he had to know what was going on.” He told her he promised himself he’d give us a week to settle in, but had to call and see if she was ok. I feel bad because one of his staff met with us in the hospital, I didn’t even think to follow up with his office. He has been a great doctor to the boys, having experience with children with disabilities (one of the reasons he was referred to us) and helped us with Aden immensely over the years. He’d like to avoid exposing Alexandria to anyone sick, so once he finishes his rounds at the hospital on Saturday he’s going to come to the house to check her out and see how she’s doing. A house call. Can you believe that? Truly an incredible doctor.
Heather, Kim’s friend since the 6th grade, came by today and spent a few hours at the house. She and Kim hovered over Alexandria enough that I stepped away to the den for a bit. It was a great visit for them and a good get-away for me. I probably should have gone to sleep, but decompressing was good. (It’s 3:30am at the moment, having second thoughts now though…) I’m bound and determined to get Kimberly a complete night’s sleep. She’s bound and determined to get me a complete night’s sleep. It’s a contest to see who’s more stubborn. 🙂
Yesterday we got Alexandria to church, which was one of those “really want her to get to do this at least once” things. Today we structured everything so we could all 6 of us sit down at the table together for dinner. The whole family. It sounds so morbid, but in reality we’re making a bucket list for Alex, things we want her to be able to experience while she’s here. As adults we think of this list and choose grandiose things like visiting Paris (something most of you know I’ll never do because they haven’t moved it to the continental United States yet), but for her we’re picking things we take for granted, like going to Church, eating as a family. I really want to open Christmas presents with her on Christmas day. I hope Kim and I can kiss her forehead at midnight on New Year’s Eve.
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