Tuesday went on like normal and we hosted our first connection group for Church at our house. It was small but good. I have missed a good Bible study since my collage days... however I'm not sure any group will ever be anything like that group of girls. I led the study for a while at our apartment and it started around 8pm I think and many nights it would go until 2-3am. Frequently I would go to bed at some point and whoever was the last to leave the house would lock up. I miss the girls and our weekly fellowship. Now we are all over the county, most of us married, several have kids, we have grown up and no longer stay up until 2am for the fun of it, but we are all still connected in being sisters in Christ.
Wednesday was the craziest day of the week. It was snowing out in the morning and the roads were bad. It took me around 15min on hwy 12 to get from Pell Lake to Lake Geneva (should take about 5). 12 was a mess. There was only 1 lane (instead of 2) and traffic was going 35mph instead of the 70mph it normally goes. I called work about 6:45am and said that I was going to be late. I was scheduled to start at 7, however I was still a long way off from getting there. They said that was fine because there were not many kids and there was an accident that just happened outside the building. By the time I got there the police were directing traffic through our parking lot area to get them off hwy 12. It was a mess. A car hit the power line outside of the daycare. Around 7:30 we found out that we would have to close because they were going to have to shut off power for hours and daycare policy is that if you are without power for more then an hour you have to close. Well by 7:30 the daycare had already been open for an hour and a half and there were kid there so all of those parents had to be called to come pick up their kids. Around 10am the last of us staff left a building that was completely dark.
Jillian and I then took a trip up to Children's... see when we were there on Friday I forgot my wallet and thus had no money to pick up her medication. They are only open until 5pm Monday-Friday. I was trying to figure out when I was going to get up there to pick up her med and an unexpected afternoon off provided the perfect opportunity. We got up there without a problem and got her med. When we went to check out the women told me $73.12! I looked at her stunned. In the past this med has only cost us $56. That was almost a $20 jump in a med that already costs a lot. At that point there was nothing left to do but pay the extra $20.
The jump in her med price has now pushed her monthly out of pocket med cost to around $150. This does not include the cost of extra meds she goes on when she is sick. It baffles me that it costs $73 for an antibiotic that has been out for decades. Oh the costs of having a, as the medical community describes her, "medically complex" kid. I would not trade my medically complex kiddo for the world though.
I did today start looking into the process of a secondary insurance for kids with a lot of medical things going on to help with the costs of it all. I'm so torn about it. Part of it is pride. I feel like someone else could always use help more then we could and thus I would not want to take it away from them. Government programs are low on funding to start with and I don't want to use it unless I have to. I always feel like there is someone worse off. The other part of me is so scared that she will not qualify. The qualification packet is long and legal terms and I consider myself an educated person but it talks in circles. I sent an email to a person about getting the process started and she said she needed the typical info, name, birth date, address and diagnoses. I sent Brent a text that said I did not know where to start. He said to give the women the info she asked for... I replied back that I could except the diagnoses line is "tripping me up, and kicks me down and then punches me in the gut." Part of the reason we have had some issues with our insurance covering some things is because she does not have a label other then failure to thrive and reflux. Those don't qualify you for anything. Those don't mean much of anything in relationship to what Jillian's symptoms are so I am afraid that they will look at that and automatically disqualify her. We will see. I'm still struggling with point one of this paragraph...
Yesterday we met my mom for dinner. Jillian's formula gets shipped to their house so we needed to meet to get it. I brought along 10ml of sweet potato for her to taste with dinner. She took it pretty good. Then a few minutes after she got done eating she started to scream. This is the Jillian "this hurts" scream. I held her and she continued to cry. She calmed down a little and would get distracted playing with something but then fuss again. Anyone who has eaten at a restaurant with Jillian knows this is super strange behavior since she loves restaurants because she can watch people. My mom held her for a little bit so I could eat and then I took her back. Her pants were wet in a weird spot. I looked an noticed her J port was open. That is super odd for that port to be open especially so close to a tube change. Mom and I took her to the bathroom and changed her clothes and diaper. There was green bile everywhere. It was gross. My best logical guess is that it popped open after she ate. The poor girl. Something strange has happened each time we have fed her sweet potato...
Well, right now she is napping, and I have exhausted today so I might try a nap too. It has been one of those weeks that completely drains me. I know that there are harder times then others with Jillian and that some times are harder on me then others. I know this will be at a better point again. It is not that life is bad right now... in fact we have our little girl so life is great, I'm just exhausted... I guess I should cut myself some slack and not beat myself up for being exhausted sometimes.
