I skipped an update in May since we moved and I finished the semester at DTS…
Julie continues to improve in crawling, standing, and eating.
We were moving last month at this time, so I didn’t send out an update for month 14. The move was long, hard and strewn with pot holes. At first I was hoping for a smooth process. After all, this is the 13th time I’ve moved since college and the fifth time since we were married. I finished my Greek class early and was able to focus on packing and moving the delicate and difficult-to-pack items (electronics, plants, etc). Despite our best efforts, though, moving day came too early and with too many things left undone.
We ended the weekend with seven problems including broken dishwasher, washer, dryer, and stove. Everything cost more than we anticipated and we were exhausted. Since moving day, we have replaced our washer and dryer and had the other appliances fixed by the apartment people (including the downstairs A/C which went out last weekend). Despite all the problems, we are very glad to have moved. It was a step forward in many ways.
We have unpacked most of the boxes and are filling up other boxes with more things for Good Will. So far, we’ve given away more than 50 boxes of things in our attempt to right-size. Sarah has many more boxes waiting for my additions before our next load.
Throughout the move Julie has thrived. She loves the new place which is two-stories and includes an enclosed courtyard (concrete) and fenced-in backyard (grass). The Texas weather has been beastly hot or dangerously stormy since we moved in, so we have avoided the outdoor facilities so far. Julie has mastered crawling up the stairs and is able to crawl down without assistance. As you can imagine, Sarah and I are a little more anxious about the “down” part. Julie is less graceful and fluid coming down. Needless to say, there’s a parent just a few inches away whenever she is on the stairs.
Julie is also getting to be quite the pro at getting up and down from furniture. Sarah still needs to give her cues about how to move her arms and legs. The physical therapist has been very helpful in this area. I had a bet that Julie would walk within 2 weeks while the PT said 2 months. I lost the bet, but Julie has still amazed us by walking around by pushing a large empty box left over from the move (so I can still CLAIM to have won, lol). We are still working on side-stepping, rotation, balance, etc. She has a little weakness in the hips, left leg and ankles. This is all quite typical, so walking will come in its time. Julie is very happy with the mobility that crawling has given her. She is very anxious to learn to walk.
Julie’s doctors have had a mixed reaction. The pulmonologist told us he was done with Julie. She is off her inhalers and has no more appointments with him! The developmental doctor has Julie catching up in all areas except for feeding. While she isn’t completely satisfied with Julie’s progress we don’t have to go back for six months (instead of four). We met some of the doctors and nurses from the NICU at their annual reunion last month. They were all amazed at the tiny preemie that lived. And the GI doctor was slightly concerned that Julie hadn’t gained any weight since the last time we saw him, so he prescribed more calories and a different formula. Her new mobility is using more calories. Fortunately, she continues to grow – over 31 inches now – and she is still at the middle of the growth charts. He was pleased with her button, but prescribed a steroid ointment for a 10 day regimen to reduce some problems with the wound. That treatment is finished and her button looks better than it ever has.
We are in the process of changing Julie’s diet to one of the varieties of Pediasure. It is higher in calories (30 instead of 24 per ounce) than before and is partially digested so it should be easier for Julie to process. The first week has been a mixed bag. We didn’t realize how well Julie was doing until we changed formulas and she started getting sick after her first feeding in the morning. These bouts have pretty much subsided, so we will increase the amount of new formula to 50% sometime this week. After Julie has completely transitioned to the new formula, we may try to get her down to four feedings a day, but for now, she is still feeding five times a day.
Feeding therapy has moved to the next level. Julie is much more willing to accept food. For example, I show her a piece of food and eat it, then show her another piece and feed it to her. Her face screws up like she ate a lemon, but she always seems to want more. Julie is still exhibiting the gagging reflex when she swallows, but it is less traumatic and less often than before. More than that, she doesn’t let it stop her from trying something else. This is huge! Sarah and the speech therapist continue working with Julie 3-4 times a week.
Just today Julie started eating dry cereal. Cheerios and Lucky Charms were recommended by the therapist. Julie licks the piece until it is soggy and then chews and swallows it. She discovered another chewing toy to help her generate saliva. She really is quite good at problem solving!
The turning point seemed to be her birthday party which we held near the end of March. We decided to give Julie a cupcake and just let her tear it apart. Needless to say, there was cake and icing everywhere, but a little bit made it into Julie’s mouth. That experience helped Julie lose her fear. Since then we try to let her feed herself whenever we can. I bought a couple of large drop cloths to catch “the fallen.” Our new townhouse has more room, so Sarah can let Julie make a mess and it is still contained. This freedom has resonated with Julie. She is trying her best to experience new tastes and textures. The next step is to add volume to her tasting since she is still dependent on the feeding pump for all of her calories.
Sarah is absolutely amazing. She studies the PT cues and exercises. She adjusts to the shifting needs of feeding therapy. She gives Julie PT twice a day, feeding therapy 2-3 times a day, cleans her button twice a day. This is in addition to normal housework and care and feeding of Julie. About all I do is mix and administer Julie’s stomach medicines every night. Sarah has also been signing for a deaf lady in church every Sunday morning and teaching sign language to two girls on Wednesday afternoons. The girls will graduate Sarah’s class this coming week and go to college, but Sarah may replace them with an adult student soon. Finally, as she gets time, Sarah has started working on her book.
We’ve had commitments every weekend for as far back as I can remember. We had our 8th anniversary last week, but had to postpone some of the celebration until later because our schedule has been so full. I completed a summer school class last week which included over 1400 pages of reading. I have 2-4 papers and more reading due this week and the week after, and then I’m done with school for two months. I’ve put in a little work on my second book. If I get time, I may start the manuscript this summer, but I have lots of other projects to do and that delayed celebrating. I hope to send out some pictures of Julie next week.
Thanks to everyone for your continued prayers,
Andy, Sarah and Julie Horn
We began to hope again that Julie would finally begin learning to eat. The unsupervised time playing with the cupcake during her birthday party really helped Julie lose her fear of food. For the first time, she actually enjoyed trying new flavors and textures. Seeing me eat something first, gave Julie the encouragement to try new things – potatoes, gravy, vegetables, etc. We just couldn’t put together the consistency.
Meanwhile, changing formula became harder than we thought. We wouldn’t have guess that her stomach was so delicate. It literally took us most of the month of June to complete the transition.
Our PT brought over different toys each week for Julie to use as part of her therapy. He generously allowed us to keep many of the toys. He had a whole garage of toys and his wife wanted to downsize on his hobby. Julie enjoyed the new challenges and we enjoyed the break on our finances (which were already stretched to the limit).
I rarely mentioned our finances in any update. I had good income from my job with Texas Instruments, but we couldn’t seem to pay down our debts. The move to a new apartment should have saved us a couple hundred dollars a month, but it cost us thousands to replace appliances and pay for movers. All bonus money just got swallowed up with more problems. Sarah and I agreed to keep our marriage strong despite the ongoing financial problems and Julie’s continual issues.
About this time in June, my boss confronts me with a piece of paper which began informal disciplinary actions against me. The reason? I setup a failover procedure on my servers which should have prevented the factory floor from pausing during a hardware failure. Unfortunately, the servers failed on Memorial Day weekend in a way that I had not anticipated so my failover…didn’t. He became further indignant when he learned that I continued to improve the systems my customer had hired me three years earlier to support. He argued that I should have completed this work long ago if I was such a hot-shot and should be available for other (more important) tasks.
Ironically, at about the same time as I received the paperwork from my boss, my customer awarded me a small bonus for my efforts. They reduced the size after the failover…didn’t. But they felt the need to express their gratitude that I tried to improve the system. Prior to my changes, the systems had no automatic failover. So, when the failover… didn’t, the result came out the same. What really got to them, was that it took an hour to track me down during the holiday weekend. I had turned off my cell phone (for church I think) and didn’t notice the first couple of calls.
My problem resulted from over-promoting my changes without the opportunity to fully test them on the production servers (which I planned to do during Labor Day weekend). My pride got the better of me (yet again). This latest lesson taught me (yet again) the need for the humility of Christ at all times. The lesson came too late (yet again) to prevent the cycle of events which had already begun.