Discouraged

I have to admit that I have been pretty discourage the last little while. Hallie is holding steady, not great, but not horrible either. I'm grateful for the reprieve from her TPN. I cleaned out her cupboard of medical supplies to gear up for all of the tube feedings supplies. I boxed up all of her TPN supplies and put them in the garage. Unfortunately, I don't feel like she is done with TPN. I feel like it is only a matter of time before she is back on it. I am grateful for the time that she has to rebuild her reserves and to not have to worry about the damage being caused to her liver. And tube feeds do give us a certain amount of freedom, in that we can start it whenever we feel like it at night, we just have to adjust the rate so that it goes in faster or slower. She is loving being able to go to sleep at night, not hooked up-- we hook her up after she is alseep.

So while I am grateful for these things, reality looms very close. While she was on TPN, Hallie was only getting 2 nights a week of tube feeds. It had gotten to a point where I HATED tube feeds. They were always her worst night and usually led to absolute blow outs or days of pain because she wasn't tolerating the formula well. We switched to a new formula (Neocate Jr.) in March to see if she would do better with it. Luckily, her allergy/asthma doctor had a ton of samples that he gave us. They didn't have any other patients that used the Neocate, so they loaded us up. Well, reality set in last week when I realized that we only had 2 cans left and I needed to order more. I started poking around the internet and was shocked at the prices. $50-$60 a can and she goes through a can every 2 days. We were going to have to pay almost $1,000 a month for her formula. It just was not a possibility. She has drained us dry and we don't have that kind of money to pay on top of her other medical bills. I started contacting doctors, trying to come up with free samples or a cheaper place to get it at. One of the nurses at the allergy/asthma dr. told us that our insurance should cover it, got all of the information and sent it in. I have to admit that I was getting my hopes up. If they covered it (we have never had an insurance cover it in the past), it would solve a lot of problems. The next morning, I got a call that they denied it. I cried. I had no idea what we were going to do.

I just feel so tired. I'm tired of fighting-- doctors, insurance companies, and anything else that I have to do to keep us afloat. Derrick has been traveling a lot and I am doing most of this on my own. Our golf tournament that I have been working on for 6 months is 3 weeks away. The deadline to sign up is in 3 days. We have 8 people registered and 2 of them are under 5. I have a lot more that have said they would golf, but so far no one else has paid. We were really hoping that this would at least give us a cushion financially, especially since our insurance plan changes in 4 days and it is the worst insurance we have ever had. We are going to have to pay for everything-- labs, x-rays, any little thing that comes along. It is making me very nervous because we are barely making it with the good coverage we have now. So, it is very discouraging to have worked this hard and just be hoping to break even.

My cousin Gentrie is really sick. She has a paralyzed stomach and hasn't been able to eat or drink since December. Her body is slowly shutting down. I have been helping them the last few weeks to set up a website, FB group, and get going on fundraising. I am happy to help because if it cuts through some of the red tape and uncertainty of how to proceed that we had, it is worth it. They had a yard sale yesterday and it was HUGE! They made $18,000. She needs $200,000, so this is a drop in the bucket, but it is a good start.

I am so excited for them, but I am so sad for me at the same time. Seeing the help that they were able to rally, made me realize how small my support system has gotten. A year and a half ago, when she first started having problems, I didn't think we would have an issue getting the help that we needed. I had friends here, we had a good ward, it would all be good. Then I left for Salt Lake for 2 weeks last March. When that stretched into 2 months and I didn't hear from hardly any of my "friends", I have to say I was disappointed. Maybe they weren't such great friends to begin with. As we got back and started to get back into our lives here, I realized that most of them had no clue what our life was really like and how hard it could get. Since then, I have watched more and more people drop out of my life. People I used to talk to all of the time, I haven't talked to in months. And it is not just the people that I thought I was friends with here in Reno. It was life long friends in Salt Lake as well. Some have admitted that our life is just too hard. Some have said it makes them feel guilty to be struggling with what they are when our life is so much more complicated. Some just don't tell us anything and fade out of our lives. And some can't deal with the constant attention we seem to get because we have so much drama going on. At a time when I need friends more than anything, it has been extremely difficult to watch this happening.

When we moved, we specifically looked outside our ward boundaries because we knew that we needed to add to our support system. I am very happy with my new ward. I think that given time, we can really get involved and be happy here. The only problem is that we are gone so much-- Derrick for work and me traveling with Hallie. It is hard to get to know people and to let them in. After Hallie's news piece aired, I heard people at church pointing at us, telling people that Hallie was sick-- no really, really sick. I don't mind-- I would rather them know than not, but it just showed how many people were in the dark about why we are gone all of the time. The sad thing is that I feel like we lost our old support system in our old ward. We didn't add to it, we just swapped. That's all right I guess, just sad to feel like the reason people were stepping up before was simply because we were in the ward and their responsibility. We have a handful of peopl left from our old ward that make an effort to stay in touch with us and I am so grateful for them.

So back to the formula-- here I am so discouraged and tired of fighting for everything. I had no idea what we were going to do. I even went for a 3 hour drive into the mountains and just prayed and cried because it felt like such a heavy burden. When I came back, there was a message from a nurse at our pediatrician's office. She was going to try and fight our insurance for us and would call me in the morning. Friday, Marci spent 6 hours on the phone with United Healthcare. And I literally mean 6 hours. When she had questions for us, she had someone else call and ask them because she didn't want to have to start all over again. I finally got a phone call from her saying that they were going to cover it. We have a 3 months supply of formula (about $3,000) being shipped out tomorrow.

I can't even tell you how grateful I am to have someone fight for us. To know that Marci would go to such extremes to help us means a lot. I know that my Heavenly Father hasn't left me alone. He has given me trials more than I ever dreamed possible, but He will not leave me alone. I don't know what is going to happen with the golf tournament. It may just be a small, quiet event and if it is, I will pick myself up and move on to the next thing. No matter how tired I am, I can't keep fighting because Hallie is worth every second of it. I will just enjoy it that much more when we have someone else help carry the gauntlet for a little while.