Looking for Work

Our family could definitely use a lot of prayer right now. On Wednesday, Bryan learned that he will be laid off effective August 3rd. At least we should have health coverage through the end of August. Then after that we will plan on paying for health insurance through COBRA. His company said that they would hire him back if more work came in, but right now everything is slow. I’m anxious about him finding another job in the current job market. We are just hoping that something comes up, and he can find another job quickly that will have good health benefits.



We have been blessed to have good health insurance through Bryan’s current work. Jill’s monthly expenses for her special formula and feeding tube supplies have been $1377. (This amount should decrease because she recently switched from her special formula to PediaSure for her daytime feeds.) But we definitely need a good health insurance plan to help cover the ongoing expenses: monthly feeding supplies, doctor visits, hospital stays, testing, and therapy. Unfortunately, we also recently learned that sometime soon we will have to start paying co-pays for all of Jill’s therapy sessions and other items that are currently covered under the Idaho Infant Toddler program and the Katie Beckett Medicaid program because the state has cut funds for these programs.


In other news, after a very lengthy process we were able to get approved for a home health provider to come in to help take care of Jill when I have my knee surgery. We met the provider this morning. My first impression based on her facial piercings, tattoos, and clothing was that she looked like an ex-gang member. After talking with her, some of my anxiety lessoned. It sounds like she has been doing home health care for 10 years. I guess we will just see how this goes. I’m not overly trustworthy of anyone watching Jill. She has been through so much. Anyway, my knee surgery is scheduled for next Friday, July 24th. I’m hoping that the recovery will go smoothly. It is expected to be anywhere from 2-6 weeks. I’ll have to be on crutches for awhile and likely need physical therapy.


Last month Jill had an evaluation from her physical therapist. At the time she was 15 months old, but she only tested as an 8 ½ month old baby in gross motor skills. I think she is getting a lot stronger though. She still doesn’t crawl, but she quickly scoots from room-to-room in a sitting up position. She recently started pulling herself up more and she even started climbing a few stairs this past week.


We have been a little discouraged that at her last doctor visits she still has not gained much weight. She is still just below the 3rd percentile for weight on the growth chart. Lately, she has had a hard time handling her feeds. PediaSure has more calories, but we have had to decrease the volume she is receiving through her feeding tube because she keeps retching after feeds. It is just hard to find the right balance of what her stomach and digestive system can handle.


At the end of May, we were back in the hospital for a swallow study for Jill. The feeding therapist thought that maybe she had a tendency to aspirate while swallowing. The test was negative. There was no evidence of her aspirating, but we are still not sure while she won’t drink more than a few sips of liquid at a time. She does like eating solid foods: crackers, olives, avocado, bananas, etc.


We have had a hard time with Katelyn lately. She cries and whines so much. Unfortunately, I think her behavior reflects our stress levels. Maybe when she is four the tantrum phase will stop. She has been entertaining us with funny comments, though. She likes to take toys from Jill. I told her that you shouldn’t take toys away from babies. And she replied, “Can I take them away when she is older.” About 50 times a day, I hear “mommy, I need to ask you something.” Instead of saying the sock is “inside-out,” she says the sock is “outside-out.” But I think the funniest, was when we were at the gas station and Bryan was washing the windshield and she said, “Daddy is shaving the car.”


Katelyn’s dollies always seem to reflect what is going on in our lives. In February, the dollies had to go to the hospital a lot, then there were the constant birthday parties, and now there are a lot of dolly weddings.


Another funny thing with Katelyn…she is absolutely terrified of bugs. She screams whenever she sees an ant, fly, spider, you name it. But at the zoo the other day, I watched her pet a python snake. I couldn’t believe it.