Things That Make You Go..... Huh?

Hello again! Yes, it's been three years since I have blogged, but, have some grace. I've been a little distracted.

Truthfully the only reason I am writing this blog today is that I figured it was the best way to get a large amount of information out on the latest developments of what I call the "Hiccup of 2015." Basically, I have some test results for you.

Turns out that I am one in 750,000. My cousin's wife, Malinda, told me that she thought I was one in a million, but turns out I'm just one in 750,000. I have a genetic deficiency that showed up in my cerebral spinal fluid. It is called Tetrahydrobiopterin Deficiency, and is mostly associated with infants who have PKU. I do not have PKU, but, I also do not have tetrahydrobiopterin. My level was undetectable. From what I understand, tetrahydrobiopterin is a cofactor of amino acids in the brain that are essential to the biosynthesis of neurotransmitters. Without this cofactor, my brain cannot keep up with the demands of making these precious neurotransmitters, which, I think, is why I looked like a Parkinson's patient this summer. Here's some interesting tidbits that I have put together:

1) The treatment for Tetrahydrobiopterin deficiency is Kuvan or Leucovorin. Leucovorin is high dose folinic acid. It is also what Clay and Kylie take twice daily and has made the biggest improvement with their neurological health. So I am hopeful and a little curious to see if it will help me, too. Their genetic deficiency was inherited on my side (sorry kids) so it makes sense that I have some sort of it as well.

2) PKU infants and children who are not treated properly have four main deficits in their intellectual abilities. Interestingly, this spring and summer when I was at my worst, I exhibited severe deficits in those same four areas. In fact, my cognitive evaluation that I underwent in August confirms it.

3) Leucovorin costs $1400 a month, and our insurance doesn't cover it. Clay and Kylie receive it because they have secondary insurance that does cover it. I still haven't figured out how I am going to get it approved but I'm working on it.

4) Lastly, my new diagnosis of Tetrahydrobiopterin Deficiency doesn't answer all the questions that we have. It does answer a lot of the cognitive and motor skill questions, but it is not associated with Erythromelalgia, Levido Reticularis, or any of the other auto-immune concerns that I have. It doesn't answer why I continue to experience joint and muscle pain and fatigue. It does answer so many concerns, including that I probably do not have MS, ALS, Parkinson's or any of those other scary diagnoses that we were looking into.

I will be seeing my Rheumatologist this Wednesday, and I am interested in what he thinks of this little new development. My Neurologist contacted my Rheumatologist last week, and, because I am having symptoms again of Lupus, they decided that I should be on plaquenil again. This Wednesday I will find out if I will also start methotrexate along with the plaquenil. I have also restarted low dose oral steroids.

One thing I really wanted to say is thank you to all the people who have prayed for me and my family. This makes me really teary to think about. I know many people who I have never met, many churches where we have never attended, and Christians in countries where we have never visited have been praying for me. And not once in a blue moon. Like living in prayer and walking this walk WITH us. Just this past Sunday I spoke with a visitor from another congregation who told me how she and her church family have been praying for me. She knew all about my illness and my family. And I had never met her before. She has family who worship with us, and my dad and stepmother worship with her. And that's just one story of many.

God has really amazed me with the amount of love He has given to me through His people. I feel that He is using His people to show me how active He is in our lives, a concept that I knew before but am seeing in a different light now. I have had complete strangers encourage me in the Lord, and their encouragement to me is an exact answer to a doubt that I had voiced in prayer and told no one about. I have been blessed to meet and make friends with many who work with KLRC, the Christian radio station here in NWA. They have dedicated prayer time to me and my family. They email me and keep in contact with me, always asking how they can pray for us.I know that many of their listeners have heard our story on the radio, and have prayed for us. Complete strangers to me. But they are praying for me and my family. I know they are, because I am getting better again. And that is only because the power of prayer.

When I think about how He has worked in the lives of my children I drop immediately to my knees, just thanking Him over and over for how He has protected their hearts and built their faith through the events of the last three years.

It has been three years. Three years ago September 2012 was the first hospitalization. My symptoms started way months before that, dating back to Fall 2011. Oh my goodness I just can't believe that I have been dealing with this for half of Kylie's life.She was four years old when I was hospitalized. She'll be eight in December.

I know that I am not the only one in this world who has ever been through hard times. Give me a break, right? EVERYONE has a story. EVERYONE has plans, only to have them changed. Tragedies much greater than mine happen every day to people who were least expecting it. There are orphans and widows in many countries who are facing greater trails. And young Christians are being murdered for confessing Christ, both in other countries AND here in our own. My trials pale in comparison to theirs. But one thing I cling to, I have seen how God has gone on before me in my own life. I see Him as this strong provider who is not hindered or even flustered with my hiccup. He did not ignore an event that changed my whole life, as well as Keith's life and the kids' lives just because He did not have an answer or He did not know what to do. No, He showed up BIG time, strong and protective. I know that I am not extra special to Him; He loves each one of us the same. So if you are facing any trial and wonder where He is, I can assure you that He is there, active in the midst of your struggle, and that He has gone on before you, protecting you in ways you may not see.

Oh God, please give us eyes to see how you are working in this world, and hearts to follow you.

To the wonderful people that I know- thank you for all the encouragement, love, support and prayers that you have given to me and my family over the years. And to the ones that I haven't met- thank you for the love, support, encouragement and prayers. I can't wait to hug your neck in Heaven some day if we do not meet before then.

Grace, peace and much love.
Michele