Julie continues to surprise us…
Just a short update with some pictures from Thanksgiving…
Julie is starting to use some words now. She says “momma” a lot now and it’s not just babbling, but she understands that it refers to Sarah. It’s very sweet, although she says it with more gusto when Sarah is working on the mickey button or cleaning her nose.
Julie cries whenever we spend too much time on her button (especially when I check the balloon). She seems to remember the experience from just before Thanksgiving when her button fell out and the doctor had to enlarge the hole while Sarah and I held Julie down. I was wondering how far back she can remember and if some memories are vivid, true color, HD images or just feelings and impressions. It made me think back to an early memory from before I was three – not a bad one or traumatic – just a picture of everyday life from very early.
Julie practices her words in the crib when she wakes up in the morning. I can hear her talking to herself and maybe one toy. Julie doesn’t seem found of lots of toys in the crib with her at night. We usually find them jettisoned on the floor.
Julie isn’t saying my name yet, but she cries whenever I leave the house. Sarah held Julie next to the window as I left one day this week, and Julie now cries whenever I go out the door (even if it’s just to the dumpster). Julie saw me drive up to the apartment this evening and started crying before I could get inside the house.
She ate a “cheerio” piece of cereal at the nursery this past Sunday. We were amazed. She has surprised us with her eating in the past, but always falls back to zero again. This was the first time she ate without Sarah in the room. Right now, we’re thinking that she will imitate other children, so we’re going to hang out with friends who have infant children so Julie will see them eat.
Julie’s GI doctor changed her medication around a bit and it is really helping Julie. She doesn’t look as tired as she has in the past. She has more energy during the day and still sleeps through the night just fine. She is gaining weight steadily.
I finally finished the semester this evening. It’s been good, but I’m glad it’s over. Between work and school, it’s been quite a ride. I wrote 15 papers, read nearly 3000 pages, watched 13 online chapel sermons, and took three final exams for 10 credit-hours in five classes. At work in the past six months, I’ve written thousands of lines of code and 500 pages of documentation. Then, there are all the appointments for doctors, therapists, dentists, clinics, etc. – 13 in the past few weeks alone. Each day has been a race from one task to the next as the goal-posts were moved further away. Today, I reviewed a paper for a classmate, worked 10 hours and finished with an online final exam – 100 questions, 20 minutes, with Sarah upset about Julie crying, and the cat weaving through my arms, 88% – I might have done better if I had studied. Then it was down to the kitchen to cook Tilapia in the oven. Sarah laid everything out for me, but she had Julie on her lap in the rocking chair during her last meal and could not spare the time to watch the oven.
Sarah and I are looking forward to Christmas this year. We’ll send out another update with fresh pictures of Julie in her new haircut and Christmas outfit. She really looks great. In the meantime, these pictures are from Thanksgiving time.
Andy, Sarah and Julie Horn
I wondered a couple updates ago whether Julie had inherited my fear of heights. As you can see from the recent pictures, she seems to have gotten over it. She loves climbing and pushing the limits of furniture and boxes.
The new prescription from last spring helped Julie quite a bit, but now had become a drag on her. I hadn’t noticed the change, but Sarah had. So she talked to the GI doctor and the change (from daily to every other week) made a real improvement in Julie’s behavior.
We tried exposing Julie to other children in hopes that she make imitate their eating patterns. For example, we met with a couple in September for lunch twice. Their son, gobbled up his food while Julie watched. For a while, it seemed to work. Julie began eating more than she ever had in the past. It didn’t last. In a couple of weeks, she reverted back to old behavior. After observing this pattern, I realized that she will eat when she wants and not because of anything we do. Still, we continue feeding therapy to give her the skills and experience she will need when she makes that decision.