I put out another update quickly after the last one because of the new procedure…
Julie is doing great, but she has another procedure scheduled for Tuesday, September 4th.
We saw Julie’s GI doctor Tuesday. He was pleased with her progress, but decided to schedule her for an endoscopy this coming Tuesday. She is gaining weight and height, but he is somewhat concerned about her oral feeding. The procedure will lower a tube into Julie’s stomach through her mouth and give him a picture of her upper GI tract. He doesn’t expect to find anything, but wants to eliminate ulcers, infections, growths and defects along the way. It’s a short procedure, but we need to go to the hospital and we just LOVE the hospital especially at 6 am after a three-day weekend!
In the meantime, Julie has been showing improvement in oral feeding. She is taking more by spoon from Sarah. Both Sarah and I have had a strange feeling that Julie might do well with a nipple bottle, so Sarah dug one out of our stash and put some water in it. That was quite a hit with Julie. She has been carrying it around most of the day, putting the nipple in her mouth and drinking small amounts of water. It’s quite a change from last time we tried a bottle. She’d scream when we even showed the bottle to her.
We are in the process of increasing calories for Julie and reducing her feedings from 5 to 4. If all goes well (it will take the entire month), Sarah should have a little more time and flexibility in her schedule. Julie is on the same formula as before and we’re going to discontinue the probiotics when the current bottle is finished.
Julie had her second haircut last month. It’s quite a job getting her hair right since she has several phases of hair. She was born with a nice growth of dark hair which quickly fell out and came out lighter. After three months in the NICU, she had a huge bald spot on the back of her head. Her hair darkened a little over the next few months but didn’t really grow. Finally, around Christmas time, her hair started growing. It got really curly and blonde, but it was terribly uneven with matted hair in the place of the bald spot. Last spring it was long enough pretty much all over so that she could handle a trim. The lady did as good a job as she could, but Julie had three different types, lengths and colors of hair. Her hair is getting more even, now, although she is losing those curls. Fortunately, she looks cute no matter what her hair does. Sarah and I are very jealous!
Julie has also graduated to a forward-facing car seat. She outgrew her original rear-facing “space capsule.” This one is more open but still has the test pilot’s 5-point harness. It will expand with her as she grows until she only needs a booster. I need to readjust it so that she can sleep more comfortably. She still sleeps most of the time she hits the car, but is also enjoying the sights of the outdoors for the first time.
Julie is now walking up and down the stairs with a hand from Mom or Dad. Her fears are dispelling as she gains confidence. Her PT suggested we encourage crawling and walking over obstacles. Sarah puts out pillows for Julie to crawl over and rolls up towels for her to step over. Julie and I enjoyed a little pillow fight this evening.
Sarah got a nice compliment this week. Julie’s PT suggested that Sarah would be brilliant as a therapist. She just needed to choose her area of emphasis and get the required training and certification. Of course, when we met, Sarah was starting her 2nd master’s degree – this one in speech language pathology. She decided to quit since she had been in school for over 20 years when we got married. So, at first, Sarah was very excited about the new possibilities, but it was short-lived. I suggested that she could work and I could stay home…well, that was the end of that. Pity!
Sarah turns 35 this coming week. She is feeling stronger than ever and loving her life. When I asked why she would trade her freedom with Julie for slavery of working for other people, she remembered how grateful she is for her lifestyle.
My first week of school went well. I got to all my classes on-time and have enjoyed them all, except for one. During that class, the prof was scolding us for answering our cell-phone, texting, playing games, (basically multi-tasking) while talking to people. Naturally, my mother called my cell-phone at that exact time. I was too conventional to answer the phone. Pity!
Work was a mixed bag. I was supposed to complete all my planned changes to my computers this week. I finished everything except for just a couple of changes. The biggest disappointment was the failover tests that I performed yesterday didn’t work properly. I’m hoping to get a couple more days to resolve these last problems before freezing configuration and updating my 1000 or so pages of documentation.
Please pray for us concerning the endoscopy. It’s just one more thing on top of so much else that has happened to Julie in these nearly 18 months.
Andy, Sarah and Julie Horn
Sarah went several years without us able to celebrate her birthday properly. This year, I attempted to organize a surprise party. It worked out OK, but she deserved so much more for everything she does and puts up with.
My work dominated my thoughts as the day of testing approached and my boss and others put more pressure on me to complete the testing in less time. Since the plant shutdown over the weekend, I should have had all the time I needed, but my boss considered every reboot as a failure (rather than an opportunity). Of course, I run some of the few computers that can be guaranteed to restart properly, because I tested them over and over again under prior management.
When my first few tests failed, management wanted to pull the plug and make me wait months (or years) until the next tests rather than take the time to discover and fix the problem. I never got over this frustration and the label of failure that hung over my future efforts.