The theme for this update – fear…
This is a long update. Julie is advancing in every way. We’ve had a few scares!
It’s been a while since my last update just prior to the endoscopy in September and lots of things have happened, but let’s start with the endoscopy. The procedure went well and Julie tolerated the anesthetic perfectly. Julie looked very good inside – no erosions, legions, tumors, toys or coins in her upper GI. One of the pictures from the procedure showed the mickey button from the inside which was very cool. Unfortunately, she has a slight problem with the pylorus valve at the base of her stomach. This should normally be closed and open (to the diameter of your pinky finger) every few minutes to allow food to pass into the duodenum (top of the small intestine) and close again to prevent intestinal acids from leaking into the stomach.
Julie’s valve is wide open (about the diameter of your thumb) and doesn’t close at all. This means that she gets the wrong kinds of acid in her stomach (which explains her acid reflux and retching) and food passes prematurely into the intestine (which explains why we’ve had a hard time with large and fast feedings). There’s nothing to do about it. It won’t kill her and may only give her minor problems in the future. I find it interesting because this might explain why some people I have known had more sensitive stomachs. While we didn’t find any major problem preventing Julie from eating, we confirmed that all the problems we’ve had with feeding her through the button have some physical basis and weren’t just in our imagination.
Since Julie hasn’t been gaining weight like she should, we’ve increased her calories a couple times since the endoscopy. We also managed to get her down to four feedings a day. Sarah is delighted because this gives her so much more time during the day. Errands are easier to perform and Sarah has been spending more time preparing to sign at church to her deaf friend and working on her book. We have also realized that we can bolus feed Julie an ounce or two at a time with a syringe when she gets hungry. It’s easier than dragging the pump around.
Julie graduated from physical therapy (PT) last month. She is nearly running now. She can climb the furniture freely (now we have to break her of standing on the furniture) and balances herself in the most precariously high positions without fear of falling. Julie has no fear which is more than can be said of her parents. She is walking up and down the stairs without help although she still side-steps a bit when the riser is too tall for her little legs. Sarah and I have taken her to the park several times this fall and she enjoys the swing, slides and tramping up and down the stairs. She loves grass, sand and gravel. When she saw a fountain in the pond last week, she ran to get closer. She was frustrated that I wouldn’t let her walk across the pond to the fountain.
In exchange for PT, Julie is now seeing a different therapist who works with speech, learning and social skills. Her feeding therapist is still coming, but the number of visits for both therapists is down to six per month. Julie is responding well to the new therapist by achieving new goals quickly. She is also doing well in Sunday school after I spent a morning sitting in the room with her.
Her babbling resembles speech more and more each day. She knows a few words, but she isn’t consistent yet. She can differentiate between types of objects, recognizes our pictures and responds to verbal commands. She seems to master new skills quickly but only on her terms.
One of the therapists rated Julie anywhere from 6 to 9 months ahead of her age, while her developmental doctor says she is still two months behind. It’s not an exacting science, but the rate of progress is obvious to everyone. Despite her weight issues, Julie is still growing. She is slightly tall for her age. Ahead, behind, big, small… let’s just agree that she is doing what she is supposed to do!
After months of nearly no change in feeding patterns, Julie made a major leap in September. She gratefully ate several ounces of baby food over a period of a couple days. The change was so dramatic and sudden that it completely caught Sarah and me off guard. She was opening up and allowing us to put food in her mouth, chewing and swallowing. She actually finished two or three containers of food which she had never done before. We nearly had the empty pouches bronzed! As time has continued, she has fallen back to just a couple teaspoons a day. It’s more than the summer, but much less than September.
As I mentioned before, we’ve had some scares recently. My first one was about a month ago at work in Sherman, TX. I normally work in Plano, TX which is only about 10 minutes away. Sherman is in the country about 45 minutes away, so I drive up there only as needed; sometimes once a month and sometimes once a week. So, I walk into my cube in Sherman, put down my stuff, grab a tape cartridge and walk over to the computer room. The people sitting around me prefer to keep the overhead lights dim, so my cube is always dark. The only light I have is very hard to turn on and takes several minutes to come on, so I rarely bother with it. Since I’m up there so little, I don’t complain about the lighting.
When I come back to my office, I sit down in my chair and start to log onto the computer. That’s when I noticed something on the floor next to me. At first it looked like a little lizard like we’ve had in the apartment, but then I realize that it’s too long for a lizard and finally recognize that it’s a snake – about 10 inches long and close enough to touch! I took a deep breath and did the most rational thing I could think of…I stood on my chair.
From my elevated position, I could see the snake and my cube-neighbors. I called to the lady in the next cube and calmly asked her to call the emergency number because of the two-foot snake in my cube. Fortunately, she didn’t freak out despite being more afraid of snakes than me. My being calm helped her to remain calm although at first she didn’t believe me. I realized that my perch allowed me to know if the five-foot snake moved, so I decided it would be best for the company if I just stayed put and kept track of its every movement. Eventually, a security guard came by, followed by a facilities guy with a long device he used to grab the ten-foot snake (which hadn’t moved an inch up to this time).
I didn’t ask the snake its religion, but it had diamond shaped markings and no rattle. It’s head didn’t appear to be triangular, but it sure looked like a young rattlesnake to me. It wasn’t until I climbed down from my chair that the lady next to me finally realized that I was standing on my chair the whole time.
The weather in Sherman had been cold a couple nights before, so the snake was probably just trying to snuggle with a nice warm computer geek. It found itself outside again and I carefully inspect my cube each time I drive up to Sherman.
Julie’s mickey button has given us a couple of scares this month. A couple weeks ago, I was feeding Julie her morning meal while Sarah was at a routine doctor appointment. I was moving boxes upstairs so I was walking past Julie in her high-chair every couple of minutes. When the pump signaled that Julie was finished, I came downstairs and found the pump tubing, connecting valve and mickey button lying on the floor instead of being attached to a baby. Julie was perfectly content, but I was ready to freak out.
The doctor said that when this happened we would have 15-20 minutes to get something into her incision before it started to close. I figured it could not have been more than 5 minutes, so I had time to go upstairs and collect a new button and the other things I would need to insert the new button. I laid Julie down, tested the new button (the old one had completely blown out), and inserted it into the hole. There was a bit of resistance but I pushed firmly past it and got the button inside, then filled the balloon. Julie cried as I pushed but calmed down within a minute. The surgeon’s nurse called us back a few days later and confirmed that I did OK and there was no apparent injury.
Then, today Sarah cried out while changing Julie’s diaper. Julie didn’t have her mickey button anymore. The button had fallen out of Julie’s clothes and was on the floor by the crib (apparently Julie threw it overboard). We have no idea of how long it had been out of her stomach. I was in the shower at the time and tried to use a much-too-small towel to cover myself. I figured this incident would be like last time, so I wasn’t that concerned as I collected what I would need while dripping water all over the apartment. When I checked the 2-week-old button, it had a pin-hole leak in it rendering it useless. I opened our last spare and tested it. By this time I gave up on modesty. Unfortunately, the hole in Julie’s stomach had sealed and there was no chance that we could reinsert anything.
The next half hour is a blur of phone calls, showers, towels, clothes, and rat-racing 85 mph down highway 75 to the hospital. It reminded me of the trip to the hospital when Sarah was giving birth. Note to self: the Ford Expedition handles better at that kind of driving than the Chrysler PT-Cruiser – bigger engine – but I still wish I had the Ford Probe or the Chevy Nova. Those cars had the power and could handle the corners. Gee-haw!
We managed to catch our surgeon between operations. He used a long, thin probe to locate what remained of the original hole and replaced that probe with a series of sequentially larger probes. Of course, Julie was delighted with this procedure. Sarah and I have seen her cry before out of pain, anger, fatigue and hunger. Those incidents weren’t a patch on what we saw today. The topical anesthetic had almost no effect. The doctor warned us not to look, but there was nothing we could do to not look. We held Julie’s arms and legs down as the doctor enlarged the now bleeding hole. We learned that the surgery didn’t actually damage any muscle tissue, but separated a couple of muscles. Once Julie relaxed her stomach muscles, the surgeon slipped the button in quite easily just like I have done 3 or four times before.
They gave Julie some Tylenol and we were out in a few minutes. We were all very fortunate that it worked out this way. Julie was spared a fifth surgery and a night in the hospital. It took a couple of milkshakes and three hours for all of us to decompress after our ordeal. Julie slept on Sarah’s lap during her first feeding and had no interest in anywhere else in the world. I put in a half-day at work after Julie started playing like nothing happened.
For Thanksgiving dinner, we invited the four fellows from my spiritual-formation small group. They are all bachelors with no family in town. We had a good meal and big-screen football afterwards. Sarah gets bored with daily cooking chores, but really shines on the holiday meals. It was a good time all around.
We certainly have lots of reasons to give thanks.
Andy, Sarah and Julie Horn
My snake incident really freaked me out about going to work at Sherman. I had experienced a lot of pressure to leave, but stayed on while actively searching for a new job. In July, I retained a company to help me in my job search. I had trouble balancing school, Julie’s curve balls and pressure from work with their additional demands. Now I had extra incentive to complete their program.
In addition, my boss did a dirty trick on me. In June, he had me identify all changes and upgrades I needed on the systems I administered. Then he gave me until end of August to complete the work and finish the documentation. In the meantime, I lost several opportunities for testing on the production systems and the standby systems because of red-tape my boss and higher management imposed on me. Basically, I had to write perfect code and pray it worked the first time. Or more simply put – impossible!
After I missed the August deadline, I completed everything at the end of September. I came into my one-on-one meeting with a complete set of documentation only to greet an escalation in disciplinary proceedings against me. I had now reached formal disciplinary action (rather than the informal disciplinary action last June). This step prevented me from moving to another group within the company (I discovered later), froze my base pay, and set me up for the next several steps. I had hoped that although technically late, I would be delivered from the current status because I had completed the project. After all, I wasn’t the only person in the department who missed a deadline (some very important and rather large projects were over two years late but those people received rewards/recognitions instead of disciplinary action) and I had warned my boss about the delay (and got his agreement) back in July.
Julie’s two button incidents in November really took a lot out of me emotionally. We had to remain vigilant at all times for a failure in the buttons. They could last six months or two days – no way to predict.
We faced our worst fear with the button incident on the day before Thanksgiving. Losing the button and not being able to replace it in time. Fortunately, it worked out OK for us and Julie. We met our surgeon again (a wonderful man) and Julie didn’t need another surgery, but we both felt drained by the experience.
The holiday meal with my spiritual formation group helped us recover.