A friend pointed out that since Jason got home, my blogging has slowed down. Blame it on actually having someone to talk to and go places with. (He’s out of town this week. Here I am.)
So we pulled the tube close to a month ago. About 2 weeks in, the feeding therapist said, “we just have to get her through her first sickness.” The Universe heard her, because she got sick last week. Both the PT and speech therapist reported having it in the previous week, so I guess it comes with the territory of letting those germ-infested strangers into your home. (Just kidding, I absolutely adore all of her therapists.)
Tuesday she barely ate, she puked three times overnight, then barely ate for the next 3 days. She lost a pound, but I did not panic. She has already gained back 9 ounces, so WOO HOO!
We went to the nutritionist today and she is still very happy with progress. We go to the GI doctor next week and I expect a nice pat on the back. It’s hit or miss as to whether she is meeting her calorie goals, but we are at least getting sort of close, even on the “bad” days. Yesterday she held a Gerber Cheetos-like thing and TOOK A BITE. She fed herself. Independently. The closest we have gotten to that previously is having her hold the spoon while I help guide it to her mouth.
She still doesn’t drink much, but will play with the cup and let me bring it to her mouth about half the time.
Jason and I went to a military formal. I wore makeup! Annika’s case manager babysat for us, and she is perfect and wonderful. We plan to use her again in the future. She and Annika love each other.
We went to a motorcycle race because I am a tolerant and accommodating wife. It was chilly to start out, then the sun snuck out and we all got a little sunburnt, despite me having two sun hats and sunscreen in the bag for Annika. Being prepared will only get you so far.
We went to the geneticist last week and they are running some bloodwork. The soonest results we will get in 6 weeks, and I am hoping they are negative. The other is a blood draw for a big genetic test that costs between $10,0000-$20,0000 and is always denied by insurance. We just have to wait to see if/what the lab is willing to write off or hound our insurance company over. So we don’t even know if it will be run, and even if they do, it takes 6 months to get results. And then only 30% of people get answers. So…a lot of “maybe?!?” The good news is they will call and tell me how much it will cost us before they run the test. They won’t get denied by insurance then bill us $20K. They just won’t do the test.
We are keeping busy with appointments…speech, OT and PT weekly; Nutrition today, GI and Neurology next week, Audiology the week after, and then follow back up with Nutrition…we rarely have a weekday off, unless you count Tuesdays (when I go to work.)
Last Tuesday I was driving home for lunch and my car stalled. On the train tracks. Like in a movie. It just slowly died and would not re-start immediately. This is noteworthy because it had about 1300 miles on it at the time. This is not supposed to happen. The next day I took it back to the dealership (I was able to get it started again after about 45 seconds,) and they have had it since. I get it back tomorrow, but at least they gave me a loaner for the time being. It’s fine, but it’s not an SUV and this week I had to an emergency diaper change on the side of the road. It’s just wilderness between the base and home, and there was nowhere else to stop. I’ll spare you the details but I definitely earned my mom badge that day. I will now look out for anthills before I put a blanket down for a diaper change. And any soldiers in the area should watch their step.