I didn’t send out an update in July, but I’ll include this piece of any update I sent out in August which covers most of the time from April to July…
Julie continues improvement in all areas except feeding. Her gross and fine motor skills, oral communications, vocabulary, recognition, and understanding progress weekly. She plays hard, absorbing everything around her, without giving any external signal of her comprehension. Then she surprises everyone when she performs new tasks as if she’d be doing them for months. She excels in some areas and lags in others, but always seems to learn in bursts. All of her evaluations show her in the 50th percentile of growth and at her age for behavior and skills.
Sarah and I remain amazed at God’s wondrous work. As a computer geek, I understand the immense complexity of learning to say nothing of the formation of a sentient mind. Julie’s progress reminds me of the gulf between the computer programmer and the programmer of mankind. On the one hand, she progresses normally. On the other, I don’t know how to express my admiration without becoming repetitious.
A summary of the past few months’ progress seems appropriate. Julie has graduated from another therapist leaving just the feeding therapist who visits once a week. Julie had as many as four sessions a week from three therapists. When she came home from the hospital in June 2011, we fed Julie according to the NICU schedule of six meals a day. We finally got her down to three meals a day in July 2013. Each pump session takes about 35 minutes with 15 minutes of rest needed before we let her leave the highchair. Sarah still has two medicine sessions a day (morning and evening) about 30 minutes before Julie’s first and last meal. Both Sarah and Julie have more time in the day for field trips and play.
As I mentioned before, Julie’s feeding issues remain static. Her new therapist had begun at the most rudimentary levels and progressed slowly. Over the past few months, she refined her initial optimism into more limited goals. As we approach the end of summer, these goals appear equally elusive. Julie appears stuck in the same behavior we have seen for nearly two years. She shows signs of progress, but regresses to the previous level. A few weeks ago, she showed interest in a mint-chocolate shake. Then, two weeks ago lemon pudding captured her taste. Yesterday, she went through some fast food bags to discover left-over French Fries which she voluntarily put in her month – a huge breakthrough – but she didn’t follow up with biting, chewing or swallowing. We continue to pray that she will make a conscious decision to eat soon. Of course, Plan B remains a viable option – let her husband figure it out!
The logistics of feeding and medicating Julie remains a burden. Most items come from specialty companies who ship according to prescription and the rules of our health insurance company. The insurance company has paid for much of Julie’s care, but we supplement a few items. Sarah orders most of the food, supplies and prescriptions. She tracks and schedules the doctor’s visits, and transports Julie to most appointments. Some of Julie’s prescriptions change from week to week. Sarah determines which prescriptions to give each week. I regularly evaluate our stock of syringes, tubes, bottles, buttons, bags and bottles of formula. While I could say that we split the load, since I attend some of the appointments and order some supplies, Sarah really does most of the work. I do what I do best – carry full boxes from our mailbox to our apartment and empty boxes to the dumpster.
Earlier this spring, Sarah arranged with our Sunday School class for those willing to learn how to take care of Julie. We found several folks willing to learn and unafraid of her challenges. They have provided us free babysitting with people we can trust. Plus Julie has had a ball with all the families! The Poulains introduced Julie to the swimming pool in their backyard. The entire class threw Adam a shower at the end of July. They blessed us with many useful and beautiful gifts.
While Sarah and Julie have had a relatively quiet year so far, I’ve endured several physical
problems. I finally decided to take care of two ingrown toenails that I’ve endured since college. The original procedure went well, but recovery took about a month. Then someone in the group I workout with, stepped on both toes with too much force and split the nails again. They continue to heal, but it will be months before the broken parts grow out. I injured my right shoulder during a volleyball game last April. I assumed it would repair itself, but after two months (with the pain increasing) I finally saw a doctor. He gave me a cortisone shot and prescribed physical therapy. My shoulder feels much better. I expect the remaining pain to subside over time. PT has taught me what exercises to
perform when I start working out again.
We learned the gender of our new baby in April. After a couple weeks, we settled on Adam Christopher. Like Julie Kristina, we tried to pick a name that we liked but didn’t exist in either of our crazy families.
Sarah’s pregnancy proceeded apace. We had a few small concerns about the usual issues – blood pressure, blood sugar, etc. – but they all resolved themselves quickly. After Julie’s issues, these problems didn’t even register enough to send out an update. Sarah began having morning sickness shortly after learning about Adam in December, but she has learned how to control the symptoms better this time around. Her symptoms continue into the 3rd trimester, but she feels better than she did with Julie.
My work problems continue as my boss finds new assignments for me to fail. He assigned me to the UNIX level-2 administrator group. I was tasked with installing UNIX on new and old servers being (re)cycled into service. My work has exposed the failings of several groups responsible for networking, implementing automatic scripts, and producing documentation. I need only install UNIX on a limited number of systems to earn my grade per week. Each week the number increases in our game show.
Since I’m not allowed physical access to the systems I work on, I must rely on others to perform basic tests. So, tasks that would take me minutes must wait for days while those with access fit my requests into their overloaded schedules. Meanwhile, my report card looks worse and worse. When the systems behave normally, I complete my work about as fast as someone who has done this work for 20 years. When the systems don’t work, I waste days working through the bureaucracy to expose denials, finger pointing and known errors.
Meanwhile, the procedures I rely on continually change without notice. My experts can’t help because their workarounds depend on environments long abandoned. My boss marks me down while appearing magnanimous for his continued patience.
I have lost my motivation, but I try to see God’s hand in the situation. I find peace and joy in Julie’s progress and Sarah’s progress with Adam.
Julie has enjoyed having a cat around the house. In turn, the cat seems to enjoy the attention from Julie. Rachael has remained surprisingly respectful of Julie. She tolerates a fair amount of rough housing from Julie without an angry response. Julie has also learned to treat the cat gently (for a two year old).
Julie loves doing gymnastics in her crib. She rolls, stands on her head, and twists in every possible shape. She hasn’t learned to escape yet, but we know it’s coming soon. We bought a twin-sized bed long ago hoping for her to make the change before Adam arrives in August.
Julie also enjoys water. She loves to touch it, pour it, watch it – but never drink it! She absolutely loved swimming at our friends’ house.
She got into wearing Chapstick for a while. It helped her appreciate tastes and different sensations around her mouth.
Having support from our church friends allowed us to complete the pregnancy classes at Adam’s hospital. Although experienced parents, we wanted to complete the classes since we didn’t get a chance because Julie came so early. They took up valuable time but we learned some new things. I went to the labor and early parenting classes. I managed to avoid the nursing class.
Sarah got annoyed with one couple who seemed so eager for natural childbirth. The mother barely showed her baby while sporting a deep tan on a slender, athletic body. You know the type – wearing cutoffs and a tee-shirt at seven months pregnant – just wanna make you cry and spend all night eating ice cream. Sarah calmed down when I reminded her that she had already experienced natural childbirth. Julie came so quick the nurses couldn’t administer any drugs until afterwards. Sarah had a tee-shirt she forgot she earned.