I posted the last two updates very late, so I made up for them by posting this one early…
Julie had a hard month. There were problems with her button, rashes and a cold, but she has survived everything (including some more doctors’ appointments and shots).
First problem has been Julie’s skin. For those who have seen her in the past couple of months, she has had deep cuts in her forehead, scalp and lesser ones in her face. Either from a nervous habit or from itchy skin, she has been scratching herself excessively. Sarah has been trimming and filing Julie’s fingernails up to twice a week. We’ve incorporated skin therapy into Julie’s other treatments. She gets two sessions of hydrocortisone each day and lotion as often as we can remember it. Sarah also applies Head and Shoulders to Julie’s hair at night and lets it set for about 10 minutes. Given how hot and dry it has been in Dallas this summer (we set a record this year with over 40 days in the 100’s) and Julie’s heritage of fair-skinned parents, it’s to be expected. We feel that we finally have a handle on things. Julie’s stork bites (marks on the back of the head) and angel kisses (marks on the front of the head), cradle-cap (severe dandruff on the top of her head) are essentially gone. She seems to heal very quickly with the right treatment.
The second problem has been the Mickey button. The valve in the button began to leak and Julie had grown out of her first button in about 2 months. After the trip to Roswell, Julie was having more and more build-up of crud around the button. We hadn’t seen this since the g-tube, so we began watching it and eventually went to see the surgeon. He agreed to replace her button with a longer stem, but we had to wait for 10 days before we could see him again. Some days were better than others, but the rash around her button began to grow as the goop from the button increased each day. Eventually, her skin was bleeding slightly and her twice a day cleanings were getting more and more “emotional.” Fortunately, the new button has really improved her condition. The skin around the button is mostly healed. The goop is down to a much lower level. And, Julie is much happier.
Right in the middle of the wait for a new Mickey button, we all got sick. I got it first, but
despite our best efforts, both Sarah and Julie got it about the time I was starting to feel better. Julie had a fever of 101.3, congestion and fussiness. A couple doses of Tylenol took care of the fever. We put Julie back on one of her inhalers and restarted CPT. She is almost completely over the cold, but we’re still doing both inhalers and CPT. The nice thing about the Mickey button is that Julie doesn’t complain about getting her medicine – she never has to taste it!
I was able to get caught up on updates last weekend because everyone was so sick. It was about the only thing I could focus on.
We saw about half the retinue of doctors this month. Plus, there was a new one – the developmental doctor. When she saw Julie in the NICU once, Julie was panting hard & the doctor reassured Julie, “You’re not in labor, child.” After her evaluation, Julie is now at the 4 – 4 ½ month level. This is reasonable given that she came two months early and spent 3 ½ months in the NICU. However, there are some areas that the doctor is concerned about, so we will need to bring in an in-home therapist to work with Julie once a week.
The pediatrician was very pleased with Julie. He gave us some hints about her skin conditions which have all worked well. Julie got her 6th month vaccinations and was running a slight fever the next day, but nothing compared to the weekend before. Julie is ranking in the low 25% in weight, middle 50% in height and upper 75% in head size which means she either all mixed up or just about right. We think she’s perfect, but we’re biased!
Julie is starting to show many developmental improvements. She is now interested in a rattle. She laughs a lot when we play or sing. She is very happy when Sarah or I pay attention to her and gets bored when she’s alone for too long. Peek-a-boo is her favorite game. She is able to follow objects across the room. She is still having trouble holding her head up and she hasn’t mastered grabbing things with her hands. The developmental doctor reminded us to give Julie more tummy time. It’s been hard given all the problems with her Mickey button.
Finally, each week I receive in the mail any number of statements from the insurance company informing me of what they are paying and what they are refusing to pay. The first month of the NICU was finally billed to the insurance company: $1.3 million – that’s just for the month of March! Julie is the million dollar baby and worth every penny. Our part of that bill was just the $250 deductible. So far, I’ve seen hundreds of thousands of dollars flying back and forth between the insurance company and the service providers. This is the first time to see 7-figures. If we’d had less than the best insurance, we’d be in deep trouble given that Social Security and Medicare denied Julie’s legitimate claim just because her old man paid too much into each governmental system. Given the choice between random acts of terror and the capricious “fairness” of liberal social policy, I’d take terrorism – because you can shot back at the terrorists!
Continue to thank God for all His blessings to Julie and us. Ask Him to show us how to help Julie catch up in her development and keep us safe from the medical expenses.
Thanks to all for your prayers, thoughts and words of encouragement!
Andy and Sarah Horn
By the end of September, Julie had all but stopped bottle feeding. Between sickness and problems with the Mickey button, she just lost interest and we couldn’t overcome her stubbornness.