I intended to send this out in mid-January as a Christmas/New Year’s update, but I couldn’t find time to process the pictures for the update. Eventually, I had to send out this update and another one (all in the same day) because of some new issues.
I began this update with a summary paragraph…
Julie continues to improve but is still struggling with eating. We had a couple close calls with the mickey button and pump.
So many good things have happened since our last update (Thanksgiving Update) that it’s hard to keep track. Julie is now just under 20 lbs and 28 inches. One nurse over estimated her height and weight (so I may have told some of you higher numbers over the phone). She can sit up for several minutes at a time while playing with toys. She can hold herself in position on her hands and knees, but she can’t crawl or roll over yet. Her hand-eye coordination continues to improve so she can hold two things at once.
Just before Christmas, the balloon on Julie’s MIC-key button failed and we needed to get it
replaced. It nearly fell out several times until we got the replacement scheduled. While diagnosing the problem, the nurse had me remove the button from Julie’s stomach and check it. So I had the cell phone on speaker, one finger over the open hole in her belly and the other hand working with the Mickey button and syringe. Gruesome sums it up well!
The new button is working well. Julie’s skin around the hole is generally clear, but we still have to thoroughly clean the area twice a day.
We spent the Christmas and New Year’s holidays mostly at home. Julie only got out to visit my brother Peter’s family on Christmas Eve and went to church on Christmas Day. Sarah has been signing for a deaf lady at church for a couple months, so with only one service on Christmas Day, we both had to go and take Julie with us. Normally, we alternate services so that one of us is home with Julie. Julie got several neat toys that she is already beginning to play with. They all have some electronic and some mechanical aspects that she should be able to grow into for the next couple of years.
She got a little sick after being out with people and her 9 month vaccinations the day after
Christmas. She never ran a temp, but she was coughing and breathing harder than usual. So we started giving her a second inhaler and she cleared up in about a week. We’ve seen this before – about once a month.
Julie has been teething since early November. The upper teeth came in first. The bottom ones are just about there, but there are times when she is difficult to console. Teething makes her mouth hurt. She has some minor issues catching her breath. And, the nissen still makes it hard for her to cope with things that she has swallowed. So it shouldn’t be surprising that eating is still a problem for Julie. We have discovered several favorite foods – strawberry yogurt and whipped cream – delicious and nutritious. Otherwise, she doesn’t like mixed flavors and most textures.
Feeding therapy consists mostly of getting Julie to take a spoonful of food and a little water by mouth. This can take up to an hour so Sarah is usually busy with Julie most of the day. We just started Julie on four feedings per day. We’re hoping that it will improve energy levels of both Julie and Sarah. However, we slowed the pump down so each feeding takes an hour again (we were down to 30 minutes per session). We will gradually increase the speed again but it will take some time.
We had a close call last week. Sarah walked into the room where Julie was sitting in her bouncer and hooked up to the feeding pump to discover that she was overflowing at the mouth with liquid. Being strapped to the bouncer, Julie couldn’t turn her head or lean over by herself. Fortunately, Sarah kept her from drowning and cleaned up the mess. It was the first time she had thrown up.
Needless to say, we were scared and confused. After all, the nissen was installed so that she couldn’t throw up. We wondered if the nissen has come undone or if there was another serious problem. Eventually, we realized that Julie hadn’t swallowed enough water to dissolve the yogurt from her feeding therapy, so the yogurt sat on the top of the nissen like a cork. The pressure in the stomach was increased by the pump until it blew up like a volcano. So we learned our lesson – more water!
We are visiting all of Julie’s doctors this month – six appointments in all. The cardiologist gave her a clean bill of health yesterday including 99% oxygen level in her blood. The ultrasound showed no trace of the tumor and good blood flow to, from and around the heart. Her heart has even grown back into normal position.
Please pray for a friend of mine. His daughter-in-law suddenly lost her baby on Christmas Day at 8 months pregnant. It is a very sad situation which has hit Sarah and I very hard since it could have easily been Julie’s outcome but for God’s grace. We have no idea why one child lives, while another dies.
Andy and Sarah Horn
At 10 months, Julie remains stationary. She can’t crawl or even roll over. We got a physical therapist for her from the ECI program available in Texas, but the therapist wasn’t making much progress. Between the holidays, sickness and an injury for the therapist, she didn’t put in many sessions and wasn’t really pushing Julie very hard. We remained patient through this time.
Feeding therapy wasn’t going much better. Julie fought against eating throughout the sessions. Each crumb or drop swallowed becomes a major victory. We literally had to get Julie comfortable with the idea of food touching her face.
Julie’s pulmonologist warned us strictly against exposing Julie to any illness during her first winter. He feared that a simple cold might lead to more serious problems given her weak lungs during the first few months of her life. Although we had taken Julie to church during the summer and early fall, we stopped during the flu season. Because of the chance of exposure, we avoided the nursery for Julie. She stayed with us during the morning worship service and adult Bible study times. She enjoyed the music portion of the service, but loudly talked back to the pastor during the sermon, so she and I spent many mornings in the church foyer while Sarah interpreted in sign language.
The next update explains the complications we encountered in January…