The rest of the October update begins here…
Julie and Adam made several breakthroughs since August.
Julie made progress in several areas in the past several weeks since our last update. First, she now sleeps in a twin bed instead of a crib. Our friends exposed her to a real bed in mid-August when Julie stayed with them while Sarah recovered in the hospital after birthing Adam. She got another taste later when Adam went back into the hospital for jaundice treatment. We tried capitalizing on these experiences, but Julie resisted in the most strenuous manner. So we abandoned the idea for a month until Sarah tried again on October 1st. This time, Julie cooperated and spent the entire night out of the crib. In about 24 hours, the crib transformed in Julie’s estimation from her personal domicile of serenity and security to the seat of unending torment, confinement, and (worst of all) boredom.
The change has created some other problems. She now wakes up multiple times throughout the night tangled in the sheets and screaming for release (limiting my sleep and reducing my humor quotient). Julie has developed the annoying habit of waking up earlier then when she slept in the crib which further reduces my much needed beauty sleep. Otherwise, she sleeps soundly with doors open and nightlights ablaze while dangling a leg or arm off the side of the bed. We moved beanbag chairs around the bed to catch her should she misjudge the edge of the mattress in her sleep.
Julie began drinking from a sippy-cup (also a syringe and eye-dropper) a few weeks ago. Unlike previous attempts this time she appears to have retained her progress for more than a day or week. She cooperates with her feeding therapist more readily than ever. Julie’s goals focus on removing the fear of food by teaching and encouraging Julie to accept small pieces of food into her mouth and then expelling them when they feel uncomfortable to her. She gags or wretches rarely now. She actually requests food (crackers, water, french-fries, bread, cereal, etc) which she holds in her hands and occasionally licks or tastes. Sarah found Julie also enjoys ginger ale.
After running out of Prevacid, we discovered that Julie no longer needs this prescription. Two years ago, Julie wretched at least once a day during or immediately after feeding. The episodes lasted up to two hours at a time although most passed within a few minutes. We found that Prevacid helped reduce the cycle gradually until this past summer, she had a brief episode once or twice a month (usually related to sickness or fatigue). When we could not afford to fill the prescription, we decided to trust God’s provision. Sure enough, she hasn’t had an incident in nearly two weeks. She appears to have outgrown the problem(s) and we no longer have to spend the time to dissolve and inject the pills through her feeding tube making medicine time much easier. We also save money – the pills cost $500+ per month without insurance and $50/month with insurance.
Our therapists performed a series of evaluation tests on Julie last week. Julie scored well in all areas except for feeding, sharing, playing with others, and danger awareness. I suggested they come back in about two years (when Adam gets a little older) and retest for the sharing and playing with others since she lacked the need for these skills. Sarah wondered how to test danger awareness – turn on the stove and leave the room for five minutes, leave the front door open for a while, etc. Oh, well. No test is perfect.
We discovered a new passion for Julie. She can spend long periods of time pouring water from one container to another. This simple game keeps her entertained while connected to the feeding pump and reduces her need for TV entertainment. She enjoys coloring,
playing with small toys (especially “rubber ducks”), and dancing (running, jumping, etc) to music. We occasionally spend time at the local park and the extensive playground. Julie loves the slides and swings.
All this progress has come with a high price. Julie began her “terrible twos” about the time Adam came into the family. What a coincidence! More defiant than before, she explodes with rage or tears multiple times a day. Then, returns to the playful, funny and cheerful girl that has dominated her personality since birth. We can’t wait for her 3rd birthday!
Julie attends a kids’ chapel now as part of her Sunday morning class. She has gradually increased her participation starting from complete embarrassment (“somebody, please hide me!”) in August. Adam went to the church nursery for the first time last Sunday. He did well and Sarah managed her separation anxiety admirably.
Adam took a long time to recover from jaundice. Not until the middle of September did he regain his proper skin color. He eats on a 4-hour cycle at night, which gives Sarah limited sleep. During the day, he eats seemingly constantly for several hours at a time and then slips into a drunken Momma-milk induced coma. Awake-time gets longer each week. He finally showed interest in toys in just the past few days and Sarah continues to engage him in basic baby games with mixed responses. Mostly, Sarah finds herself the object of a stalker romance – Adam refuses to let her out of his sight for more than a few seconds without crying. Needless to say, Sarah suffers from sleep deprivation.
Adam went in for his 2 month checkup and shots today. He weighs 12 lbs and 4 oz (gaining 4 and half pounds and a couple inches since birth). The doctor expressed his satisfaction with Adam’s progress. We thank God that Adam has none of Julie’s problems except his temper.
Although Adam gets easier to deal with each week, he remains demanding. The stress of our situation (financial and employment) and fatigue from caring for the kids (Julie’s feeding issues and Adam’s demands) has inflamed some of Sarah’s previous health issues. Fortunately, her symptoms have been limited, so far. She received a clean bill of health from her doctors this week, but I realize she is operating beyond her limits.
My shoulder has begun to act up again. The past few days have been so bad that I haven’t been able to work on school assignments. Tylenol barely puts a dent in the pain. Lifting and carrying the kids only makes it worse.
Despite all of our medical and financial problems, we hold to our confidence in the Lord. We strongly believe that our current situation didn’t come to harm us, but to help us move to the next step in God’s plan for our lives. We hope for a blessing from God soon since we are running low on time and high on problems. He has rescued us from many problems in the past so we believe He will do so again. Please pray for a God-sized blessing for us.
Andy, Sarah, Julie and Adam Horn
Julie’s terrible twos began as early as July. It hit with full force in September and October. Her progress with drinking and feeding gave us hope. Her transition to normal bed saved us the trouble and expense of two cribs. Adam used a bassinet for the first few weeks.
Ironically, we threatened Julie with sleeping in the bed if she didn’t act right in September. Then in October, we threatened her with sleeping in the crib when she didn’t act right. Funny how things change.
Similarly, I thought unemployment would destroy our family. After a month, I was so happy to be away from the stress of that job. Sarah really needed me to help with the kids – she wouldn’t have survived much longer without my help.
My new classes at DTS needed as much time as I could devote to them. One assignment took over 20 hours of work yielding a C level grade. My next assignments improved the grade, but took about the same amount of time. I really don’t think I could have survive the class without the extra time. Although hard, I really enjoyed the one hard class and the insight I received.
So between classes, kids, benefits, insurance and looking for work, I had more than a full-time job to replace my full-time job. We believe God planned everything to work together for our good.
The prevacid prescription provided a concrete example of how God makes this work out. We learned Medicaid wouldn’t cover the drug with just a couple days worth left over on Friday evening. So, we decided to try without it for the weekend and Julie did well (maybe even better). We never would have known this if I hadn’t lost my job, lost insurance and couldn’t fill the prescription.
We thanked God looking out for us, but we still desired release from the pressure of debt and poverty.
Speaking of poverty, we spent several weeks hoping that God would bless us before having to use the food stamps and Medicaid benefits. Our EBT card (food stamps) got lost in the mail. The replacement didn’t arrive until mid-November. We ate down whatever food existed in the apartment, until we finally used the card just before Thanksgiving. We are like kings for the holidays.
Similarly, we didn’t use the Medicaid benefits for several weeks, too. They kept rejecting our prescription claims, so we wondered whether God would bless us with a new job (or something better) before we actually had to use it. Our hopes rose and fell over and over again while we fought the system. Eventually, our claims began to be honored. God hadn’t answered in the way we wanted, but He kept us going.
Eventually, the unemployment people agreed to pay me six months benefit. When the food stamp people found out that I received unemployment, they slashed our food stamps by two thirds – that really hurt. Again, everything worked out, but not as we hoped.
For all these situations, we believed that God understood the problems and gave us ways to survive. We needed to remain humble (to do what we didn’t want to do) and patient (to wait on Him to reveal which path we should take).