The Last Three Months

We have had a lot going on the last couple of months.


--At the end of July, I had knee surgery on my right knee. The surgeon located and removed a piece of loose cartilage. He also did another procedure to help my knee cap to track properly. I had to use crutches for nine days. For the first couple of weeks after surgery, we had a home health person come in to help with Jill’s care. I was very grateful to have the help. My knee is a lot better now, but I’m still going to physical therapy twice a week to try to get back my full range of motion.



--Bryan is still looking for work. It has been discouraging that he hasn’t even been offered an interview, yet. Previously, he had almost always received a job offer from every company he had ever contacted. Please let us know if you hear of any civil engineering job leads.


--Jill went from five daytime feeds down to four daytime feeds through her feeding tube. She is still getting about the same number of calories as before. She still has her slow eight-hour feed during the night. For a short time, we were using Pediasure. Unfortunately, she wasn’t tolerating that so we have had to switch to Peptamen Junior. It is crazy expensive….$10 for an eight-ounce can which amounts to $1500 a month in feeding formula. Currently, it is being paid through COBRA insurance benefits, but we will most likely have to cover this cost once Bryan finds a job since Premera Blue Cross of Idaho doesn’t cover special nutritional needs. It has also been discouraging that she is hardly eating any solid foods lately. I’m not sure why she is regressing.


--On a happier note, Jill is now walking. And she is saying new words daily. Three of her pictures are going to appear in a CDH Awareness calendar next year. Here is the link: http://www.cafepress.com/breathofhope.410812838


--In September, we took a spontaneous family vacation to Washington and Oregon. We had a great time seeing old friends. We spent a few days at the Washington coast with a couple from our church. And one of the other special highlights was meeting a family who has a daughter with CDH who is now a healthy 3 ½ year old. The couple talked with us for several hours on the phone before Jill was born, but we had never met them in person.


--At the end of September, I started working part-time from home grading high school English papers for an online academy.


--Also at the end of September, I had to call an ambulance for my mom. She had gotten sick in the night and had fallen in the bathroom and was too weak to get up. When the paramedics tested her sugar level it was 576 (normal blood sugar level is around 100). She basically ended up slipping into a diabetic semi-coma which is officially called, diabetic ketoacidosis (DKA). It was pretty scary. My mom mostly slept for the first day in the hospital. At one point the doctor was able to ask her a few questions, but she only answered about half of them correctly. The nurse told me that sometimes the patients simply don’t wake up. My mom woke up and became more responsive by the next day, but she ended of spending five days in the hospital.


--The following week, I was busy setting up home health for her. Her sugar levels have been a little better. However, she struggles with understanding what foods to eat for her diabetes and consistently taking her medicine.


--Bryan and I celebrated our wedding anniversary on Oct. 18th. We’ve been married for six years now. We actually had a friend from church (who is a pediatric nurse) come and watch the girls while we went to dinner and a movie. I think it is only the second time that we have been to a movie theater together in about 3 ½ years. It was definitely a special treat.


--First Katelyn got really sick then Bryan and I started getting sick. On Tuesday (Oct. 20th), I took Katelyn to the doctor. She tested negative for the flu. On Thursday (Oct. 22nd), I went to the doctor. I tested positive for the flu. My doctor said it is most likely the H1N1 flu, and she thought that my daughter’s test could have been a false negative. So anyway, here we are trying to get over the infamous swine flu and praying that Jill doesn’t get sick. Since her lungs were so underdeveloped at birth, we worry about her getting any respiratory illnesses.