Landon's Story

Wednesday, March 2, 2016

A Year Later

It has been a long time since a post. Life has taken a hold of us, and just doesn't want to let go. Our roller coaster continues. It seems the ups and downs are getting bigger and more dramatic as the time goes on. First lets start with an update.

Since our last post our insurance battle has continued. We found an advocate and then a lawyer and continued our battle. An appeal of the insurance denial had to be made, and we'll get to all of that in a bit.We got some responses from some of the people we contacted regarding Landon's story. Some were helpful, some were just to say they wish they could help but didn't have the resources to do so, and others pointed us to more people contact. All of sudden it seemed we had too many people involved instead of not enough. Keeping all of those people updated takes hours out of every week.

Landon has been in the hospital a few more times. We followed some cardio concerns which turned out to be nothing, but was a stressful process at the time. We then fell into the metabolic world, really on accident, and have struggled through that process until recently. So far, everything was eventually ruled normal. Great news when you're talking about genetic and metabolic conditions which can be very life threatening and don't always have great prognosis'.

The last few days have gotten a bit more crazy again. The appeal, which never did get to a trial with all of our detours to different specialties, had to be withdrawn. This is basically due to the legal part of these medical things not at all meshing with the real world path these medical things follow. It is common that legal proceedings take an excessive amount of time, however, in the appeal process for insurance requests the only information that can be used is the information that was available at the time the original request was submitted. A year can imagine the things that have changed.

Although we still don't have an answers, we have a significant amount of information regarding what "it" isn't. Those things are important when it comes to his appeal, but we wouldn't have been allowed to use any of it. The other thing that is important is having the support of all of the doctors and specialists that have been seen. I have written plenty about the difficulties working with our current neurologist. At a minimum, he's "difficult". We never had his full support with the appeal, and it had become very problematic for us and the lawyer. So, yesterday the appeal was officially withdrawn. It was a difficult email to read, but we had to keep moving forward.

A lot of that brings me to today. After being at work for about 15 minutes I received a call stating Landon was having difficulties at school. I got there to find he most definitely was not himself, so because of difficulty getting ahold of his doctor by phone, we headed to the clinic. The good news is, Landon seems fine. I'm not sure what occurred today. We are watching him closely, but for now he's doing ok.

The GREAT news is that all of his doctors, for the very first time, coordinated and agreed upon our next step. That next step is a visit to Mayo Clinic. This is also out of state, something we know all about battling insurance for. If somewhere is going to find us answers though, it would be there. We are hoping this is finally going to be what he needs. It means a brand new insurance request though, coordinated between 4 doctors, and for a much larger and more expensive visit. I would be lying if I said I'm not skeptical.

So, a year later and we are in the same, but also very different, situation as we were when this started. We're still getting amazing news only after being run through the ringer of an urgent or emergency situation. All of our good news comes with a "but", and we have to be very careful about what we accept as reality and get worried or hopeful about because in an instant it can all change. All of this has caused such extreme emotional exhaustion that there are days we all literally cannot even think about doing anything but get everyone fed, through the day, and back to sleep. Any day not in the hospital is considered a good day though, even our emotionally exhausted ones.

We have to keep reminding ourselves that it will all hopefully, one day, be worth it. It's taken a year to get just about no where, so I can only hope by the time he's an adult we might know at least 10% more than we started with. It is my hope that someday, families in our situation can get the information that we have had to fight for years for in no time at all. These battles are why SO many special needs parents suffer with their own mental illnesses and personal struggles. The special needs world has a long way to go still, and we hope it will get there someday.

We fight for this fighter, because he's worth it.