I started in the fall of 2014 to transfer the Julie Kristina updates from email (and Facebook) format to the heart4ministry website. This marks the last update in the email format…
Everyone made progress until we got sick with the creeping crud…
In our last update (October 2013), I reported that Julie began drinking freely from a sippy-cup. Unfortunately, that advance only lasted for a few weeks. Once she graduated from the high-chair to the rocking chair for her pump sessions, she lost a stable, clean, and safe surface for play. Her fascination with water turned into puddles on the furniture and carpet, so she lost certain privileges. Her ability to swallow liquids diminished at the same time either due to lack of focus or practice.
Instead of water, Julie changed her interest to food – holding a piece of bread/cracker, tasting a doughnut, and even nibbling on a French fry. She started eating with increased volume before Christmas as we reintroduced foods that didn’t require chewing (like pudding and ice cream). We discovered two or three flavors she enjoyed and began focusing on them. After New Year’s she actually finished an entire pudding cup in one sitting. Our hopes soared one day as she closed in the number of calories needed to replace an entire pump session with oral feeding. We started introducing new flavors and increasingly difficult textures. At her last feeding therapy session, Julie finally sucked a liquid through a straw (with a one way valve in the straw). An amazing feat for her! We hoped to report to her GI doctor some great news at Julie’s regular 3-month
appointment. Then Julie got sick…
Julie lost all interest in eating. The doctor agreed that Julie could stop one of her prescription medicines, but he discovered two new concerns. First, Julie’s weight remained static from her last visit in October. The doctor didn’t panic, but we need to watch her until our next visit. Second, the doctor saw some tooth decay and recommended a dentist friend of his. In preparation for the dentist, we started brushing Julie’s teeth. So far, she has cooperated and even enjoyed the process.
Julie’s terrible two’s appears to have dissipated. Instead, Julie asks more questions. She now wants Sarah to sing to her as part of their bedtime ritual. Julie occasionally joins into this joyful noise with her muddled pronunciation and dissonant pitch. Like her father, she makes up for it all by singing loud.
Coincidentally, the singing started after Sarah began singing to Adam as part of his bedtime routine. Her interest in eating peaked just after Adam began spoon feeding. Pure coincidence, mind you. Don’t draw any conclusions.
Adam continues to thrive as he sets the trend in the house. His last doctor’s visit placed him in the top 75th percentile for height and weight – he never misses a meal. He outgrew 6-month clothes and raised his head off the floor in time for my family’s visit at Thanksgiving. By 4 months old, he mastered rolling over and quickly learned to do log-rolls across the floor. Placing weight on his knees still eludes him, so crawling remains an unrealized goal. Instead, he enjoys sitting up (with some help) and standing/hanging in the jumper. He began appreciating toys just in time for Christmas. He surprises Sarah from time to time by sleeping through the night, but most nights he wakes up at 11 pm, 2 am, and 6 am.
His doctor gave us permission to introduce solid foods to Adam just before Christmas. The doctor grew up in Texas, so he emphasized BBQ and other native Texan foods, but told us to avoid raw honey until one year old. Otherwise, he wants us to introduce Adam to as many things as possible to immunize Adam against future food allergies. Sarah enjoys selecting new bottles to try. Adam had mixed results, then he got sick…
Sarah fared well over the past few months. Despite ongoing lack of sleep, she managed to get everyone onto a regular schedule which really helped the feeding and bedtime issues. Then we all got sick…
School started for me again this past week. I have three classes on- campus and one on-line class this semester. On Tuesday and Thursday, I leave the house at 7 am and finish classes at 11:30 am. I have a night class for the next four Tuesdays which keeps me out until 10 pm. Otherwise, I have the afternoons to read, study, and work out at the Baylor Hospital gym. I did well the first day of class, then I got sick…
Our symptoms began two weeks ago. We all feel better, but far from well. The sinus and chest congestion symptoms have hung on the longest. Fortunately, none of us had severe fever or nausea. We can hardly wait until we feel better and we can get back to the progress we had at the start of the year.
Andy, Sarah, Julie and Adam Horn
Just in case you missed it, this update had a single theme – we all got sick. Ugh! Despite no job and limited cash, we felt good about life and our prospects for the future. Julie made progress. Adam made progress. Sarah felt good and I felt good. Our sickness interrupted everything.
We had a really good Holiday season. We saw quite a but of my family and had good contacts (albeit, remotely) with Sarah’s family. The kids had lots of interaction time and received wonderful presents from friends and family.
Texas got hit unusually hard by a blast of winter weather: snow, ice and very cold temps. The power in our apartment (along with 1/2 million of our closest friends) lost power for about 12 hours. I hoped to ride out the cold by bundling up, but once the temperature inside the apartment dropped below 55 I decided to abandon ship. I had enough power in a UPS to get on the internet and make reservations for a nearby hotel. Two hours later, we had the car packed up and the kids loaded.
The hotel initially had no record of our reservation, but finally found it under the next day. (Somewhere alone the line the internet decided to override my choice of days.) It didn’t matter since the hotel had no empty rooms (another internet problem). Our contacts either had no room or no power. So, we had no place to go and plenty of time to get there.
Not sure what to do next, I thought to run past the apartment “just in case.” Fortunately, the power had just come on, so we unpacked the kids, boxes and bags. The two heaters pumped nearly full time just to keep the temps in the mid 60s until the storm passed and the sun came out. Our power bill for December – over $400 – instead of about $200.
Unemployment gave me the option of taking classes on campus. This opened up more possibilities (not all classes are available on-line) and allowed me time away from the house to focus on school work. Once home, I could spend more time with the family. I hoped this schedule would allow me to workout in the afternoons. Continual sickness and pain in my shoulder made that impossible. So, I spent afternoons in the student center reading, writing and watching videos for my one on-line class.
Julie’s feeding stood out as the biggest disappointments of this period. She actually began eating with sufficient volume to make us hope to reduce her button feedings. Instead, we settled for sucking water through a straw (with a one-way valve). The feeding therapist eliminated all other goals to this one by Julie’s 3rd birthday when she can no longer received therapy from this organization.