We haven’t posted because there hasn’t been much new to report.
Hurricane Harvey visited New Orleans this week. It was fairly mild in our area of NOLA- our street flooded, which it does for every rain, but otherwise it was just some thunderstorms. If I hadn’t been paying attention to the weather, I wouldn’t have even realized we were in a hurricane. (Speaking of flooding on our street, it seriously annoys me that our neighborhood doesn’t have a drainage system, but if you go 2 blocks/1 street over into the “nicer” neighborhood, they do). We still went in for treatment for Monday and Tuesday. Tuesday we actually ended up being the only ones there for treatment at our regular time.
As I mentioned before, the laundry room for this house is down an outdoor flight of stairs. After it stopped raining Tuesday, Jess went downstairs to switch a load of laundry. Due to the rain and the fact that the stairs are wood, the stairs were very slippery, and she fell down the stairs–twice. I spent a while Tuesday night panicking over how bad it could have been if Jess had been seriously injured and unable to feed Lexi. Luckily, she is just a bit banged up and bruised, but it could have been so much worse.
I’ve said it before, but I think it bears repeating– inchstones, not milestones. Lexi’s inchstone for this week: Tuesday, Jess was getting ready to run out to pick up our pizza (pizza during a hurricane is totally a “normal” tradition, right?). As she crossed in front of Lexi to grab her purse, Lexi realized she was leaving, and said “Bye!” It was the first time she has ever realized someone was getting ready to leave, and said bye without being prompted.
Today, Lexi took the first bottle from me since April. Given my panic last night, I’m not convinced this is coincidence. It very well may be that she heard me panicking last night, realized that it was really upsetting me that she wouldn’t eat for me, and decided to start cooperating. She’s frequently demonstrated that she’s more intelligent than even we give her credit for, so I wouldn’t put it past her. Either way, as it turned out the issue was that my shoulder simply wasn’t strong enough until this week to hold her in the position she wanted to be held in. It took me literally holding the bottle in her mouth for 20 minutes while using a trick her OT taught us of applying gentle pressure under her chin before she finally gave in and ate, but she did finally eat. Even if I can just get Lexi taking 1 bottle a day from me, that will be a huge load off Jess.
In other news, we finally broke down and hired a sitter over the weekend. We really liked 2 of the people we interviewed (Violet and Chloe), so we tried them both this week. While we liked Violet better in the interview process, Chloe was better qualified, and after having them both watch Lexi, we liked Chloe a lot better. Violet was great at playing with Lexi, but was awkward holding her, and didn’t really seem to connect with her or play the games Lexi enjoyed. Chloe really met Lexi where she is, and seemed way more comfortable holding her. Lexi also seemed to connect with her better. Although she refused to eat or take her medicine from Chloe, I think it was because she knew we were here and would take over. Next time, we’re going to try not being here and see if she will eat if she knows we aren’t here to take over.
The last week, Lexi hasn’t been sleeping well (4-6 hours a night routinely). We suspect this may be due to all of the new things she’s learning, and that she’s just too excited to sleep. Unfortunately, the brain heals best during sleep, so we’re discussing options with the doctor to get her sleeping again. One of the things we’d really like them to do is increase her oxygen ratio, since she’s currently on a mix of oxygen and room air. Dr. Harch is being really conservative with her mix since we saw such huge improvements so early on– a little overly conservative, in our opinion. One thing that several parents have told us is for the kids that don’t sleep well, increasing the oxygen helped a lot. Another option would be a sedative of some sort. While we aren’t overly fond of this option, it is so important that she sleep!
In mobility news, she’s been working really hard during tummy time on lifting her head, pushing up on her arms, and rolling. Our new agreement is that she isn’t allowed to sleep in the bed with us until she can get herself there, and she wants to sleep in bed with us so bad that she’s actually working during tummy time. She’s also been working hard on her sitting, and has started supporting her weight during standing practice for 5-10 seconds at a time. We are so optimistic with the progress she’s been making!!
That’s everything for now. Until next time!