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

The World Did Not Come To An End

Well, it has been one year and one month now since our family began eliminating gluten and dairy from our diet.

It seems like such a daunting task at first. I mean, just the very mention of being gluten or dairy free brings about a negative response, such as "I'd die first." Yes, someone actually said that to me. And I use to feel that way about our lifestyle.

However, last Spring, under the advice of some really smart medical providers, we went GFCF, and do you know what happened?

The earth kept spinning and the sun kept rising every morning. The world did not come to an end.

It was overwhelming at first. It still is sometimes. The hardest part of being GFCF is that it makes you have to plan ahead for meals and snacks. No more fast options for hungry kids. No more McDonald's (even though Chick-Fil-A has become my best friend!). No more opening a package for a snack. Now, when one of the Kilmer kids whines "I'm hungry" my response is "Go eat some fruit." I know that may sound like a healthy solution, but the problem is that the kids get hungry more often and we are all still having a hard time believing that we don't need a bunch of starch-filled artificially-flavored preservative-packed food in our systems. GFCF snacks tend to be lower in carbs, meaning the kids are hungry more often.

I have to actually plan for meals and snacks. Sometimes I get on a roll with it and I am so proud of myself. I will spend hours in the kitchen preparing fruit and GFCF protein snacks for the entire week. Then my proud moment fades quickly as the Kilmer kids ransack the entire stock of GFCF goodies within one day, leaving me to scrounge around for more snacks.

They are growing kids, after all.

But that is the thing. They are growing. They are taking less medicine than they were before. Clay and Kylie's skin looks much better. Kylie has no more eczema at all. Kenzie and Kylie do not complain as much about abdominal pain. Kenzie is actually much more active and participated in track this year.

And I have gotten pretty good at making some yummy GFCF snacks. I have pinned a lot of recipes on my pinterest board. I know that I should be writing them down here in blog-land, but, let's face it, that's just not happening. But I actually enjoy cooking GFCF meals now. I'll be honest, it is much harder to be dairy free than gluten free, but I lately I have found some amazing vegan cookbooks that have really helped me out a lot in that area.

So, what piece of advice could I share with anyone who is contemplating going GF or dairy free, or both?

I would want you to know that you can do it. You will not die :) Take it slowly, get some help from emeals.com, and read some great blogs. Enjoy the sunrise the next morning. The world will not stop spinning, I promise!

Let's Have S'More Fun!

July 2, 2011, was a Saturday. McKenzie had spent the night with a school friend at her slumber party, and I had to get up extra early to run over a GFCF muffin for her breakfast. Since I was up, I decided to make a new GFCF pancake recipe that was in my new favorite cookbook.

Basically, it is a chocolate chip pancake with marshmellow cream sauce for syrup. Just because it's GFCF doesn't mean that it is healthy or low in sugar! But, hey, it's Saturday morning, and who doesn't deserve a little sugar fix once in a while?

Another success! I was starting to breathe some sighs of relief.

As you can see, the kids were very happy when they awoke!

"I Must Have Apple Pie!"

During the summer months, Clay could not stress to me enough that it was not a true summer unless he ate some apple pie. He could not get his mind off of it. I have a dearly loved recipe that I have turned to for years. Here is our first attempt at GFCF baking.....

We used Gluten Free Pantry's pie crust mix. I was so nervous that my GFCF version of Grandma Ople's Apple Pie would not be the same as the beloved original. And I was a novice at GFCF baking, so I was doubly overwhelmed.

Here are some pictures of how the pie turned out.

GFCF version of Grandma Ople's Apple Pie

                                      

I was not that taken with Gluten Free Pantry's pie crust mix. For one, it is very flaky. For another, it is heavy on the brown rice (I think) and xanthum gum. There is a slight aftertaste. I am not big on flaky crusts, which is just a personal preference, I know.

There is a a pie crust recipe in Silvana Nardone's book Cooking For Isaiah. I think I'll try it next.

Here is a link to the best apple pie recipe on this planet. It can be converted to GFCF by using Earth Balance dairy free butter substitute and GF All Purpose Flour mix.

Enjoy with some Vanilla Coconut Ice Cream!

http://allrecipes.com/recipe/apple-pie-by-grandma-ople/detail.aspx

Catching Up After Being GFCF For 6 Months

Well, you may think that since I haven't blogged in so long that not much is going on. Actually, it's the opposite. I have thoroughly been enjoying and embracing our new lifestyle, with one exception, I miss cheese dip. Don't tell Clay or Kylie, but every once in a while I will sneak to Jose's and have gluten free enchiladas with white queso, just because I deserve it!

I wanted to share some pictures with you of all the food ups and downs that we have experienced since May. There are some serious follies, but mostly good experiences! However, feel free to enjoy a good laugh at my expense! I don't mind.

I am going to add the best recipes in the Yummy Recipes page soon. We have had lots of successes, and a few failures, and have even branched out and created our own concoctions! The kids are pretty proud of their new way of eating. They love to share their food with their friends, and then hear their friends brag about how great it tastes!

So get ready, my foodie friends, because as soon as I get Kylie to sleep tonight, I am going to blog about some great experiences that I will never forget! Laugh at my mistakes, learn from my failures, and take whatever helpful information I can give you. Don't be afraid of being GFCF- after six months I have decided that it is not all that bad!

Let The Journey Begin....

And so it goes...

On May 5th, Cinco de Mayo, of 2011, I decided to start blogging.

The concept of blogging is very new to me. Three years ago, a dear friend asked me why I did not blog. I told her that I just didn't think I had anything important to say, and that it wasn't my personality to blog about daily events. If I was going to blog, it was going to be for a purpose! It would have to be about something going on, or some spiritual concept I was studying, or a spiritual battle I was struggling with that could help others who faced similar struggles. Blogging with intent. But I have never felt the Lord calling me to share anything with total strangers on the web.

Until now.

Last Monday, April 25th, 2011, our oldest child, our precious son, Clay, was diagnosed with Asperger's Syndrome. This diagnosis was not a surprise to myself or my wonderful husband, Keith. We have known for years that Clay has autism, we just had a difficult time scheduling the evaluation to prove it. But, now, here we are, 10 years and 10 months into his life on this earth, and we finally have a team of specialists surrounding us, helping us, and guiding us through this process. Someday I will have to blog about how providential our God is, and share Clay's story more, so that you can see God working in his young life, and maybe it will give you hope, too.

I was not moved to blog until May 5th. On May 2nd, we met with the genetics team at Arkansas Children's Hospital, and, after 5 and 1/2 hours of evaluations and waiting, we left the office on a gluten and casein free diet. I am a certified pediatric nurse practitioner, and I know of the "Autism Diet" and all of the controversy that surrounds biomedical approaches to autism treatment. I have read papers and studies from both sides, and I get it. But, here I am, with my family of 5, on a GFCF diet, beginning a long journey to see if, for our genetically specific problems, this diet actually does have some improvements for all of us, not just Clay.

I am not advocating the GFCF diet for anyone. I just want to make that clear. I am not saying that it will help with any autism problems or other medical ailments that you may have. But, for our family, this approach was recommended and will be followed up with labs and developmental evaluations, because it could be that for Clay, and maybe our youngest daughter, Kylie, that the GFCF diet works for them. Also, our middle daughter, McKenzie, has gluten intolerance manifested by GI issues, which was an interesting piece of the puzzle for the genetics team.

But why blog about it?

The rates of autism are increasing, and along with them, so is the anxiety and fear level of parents. If our journey will help anyone see the hope in raising a child with autism, or any other special need, and see how God has a plan for them as well as for you, then it is worth it to blog about it. I want our story to point to Christ, and to honor Him for what He has done and what He is doing in our lives. He is the main character of our story. I stand comforted to know that He was with them as they were fearfully and wonderfully made within me, and that their developmental concerns were not an accident or surprise for Him. I know He has plans for them, and I claim Jeremiah 29:11-14 for all children, regardless of their social, mental, emotional or physical development.

I am also blogging about it because I think it will help me with my sanity. Even if no one reads my blog, at least I am getting all of my thoughts out of my head and onto some sort of documentation, so that I can look back and remember what was occurring on what date, and what type of therapy we were involved in, etc. Hey, I'm human! I need an outlet. And blogging is going to be my outlet to help me through this, quite frankly, difficult part of our journey.

All of this typed on a pretty black and white floral design with a green title. Hey, I am a green girl at heart!

I look forward to learning from you, too, as many of you have already been where I am and have made discoveries of your own. I would love to know what you have learned, and share it with others. We are all in this journey together. God did not intend for His people to be alone. We need each other!

So, as I end my first post, I am really excited and nervous as to see what God does through this little blog. I pray that He will use it to help me know Him more fully!

Grace and peace to you all!

Michele