Incredible News!

We have been working hard to get TEFRA for Henry - the supplemental insurance through the state of Oklahoma, that would immensley help our family financially.  The TEFRA program began here in Oklahoma when Ellie Kate was a little girl.  Up until then, we only had our private insurance to help us pay our medical bills.  I remember getting one of our very first hospital bills, when Ellie was only about six-weeks old.  That particular bill was $75,000, and that was AFTER our insurance had stepped in.  God is so good, ya'll.  He took care of that $75,000 bill!  He's taken care of many of our bills, and even though we continue to pay on those, He continually provides at just the right time.  


After the CVS test results, when we had the confirmation that Lucy indeed had NKH, I immediately started getting things together so we could apply for TEFRA as soon as she was born.  Technically, you cannot apply until you are one month of age, but since it's a very detailed process, I was able to start working ahead of time.  Lucy was accepted and has received TEFRA since she was around one month old.  That is an amazing thing!  We have had this help with her from almost the beginning and it has save her and us in so many ways.


Here's how it works:  Lucy gets a medical bill/sees a doctor/has a procedure/stays in the hospital/gets a prescription and our private insurance does their thing.  THEN, the state insurance steps in and takes care of much of the rest!  Now, not all is covered completely, as Lucy is on many meds that aren't FDA approved or aren't FDA approved for the purposes the NKH doctors are using them for.  There are also limitations on things such as equipment, certain treatments, therapies, etc.  HOWEVER, even if a little is covered, it is a saving grace for us as a family.  TEFRA has kept us from going bankrupt, to be quite honest.  Another amazing and interesting thing about this program is that it isn't financially based.  This insurance provided through the state, is given to the child because of the severity of their disability.


Today we received word that Henry has qualified for TEFRA!!  His current disabilities have made him eligible according to TEFRA and it's extensive process, and as crazy as it sounds, we are exceedingly grateful.  I knew it would be more difficult with Henry because his disabilities are much different than those of the girls.  However, I also knew the Lord wanted me to fight and work and pray and push and email and call and mail and call and email and call . . . . I knew He wanted me to be a momma-bear about this and humbly try to get Henry into this program.  I knew how many medical bills we already are trying to pay off for Henry (all have occured since Ellie's Heaven Day).  Without a doubt, I knew God wanted us to at least try to seek help this way because we know as his parents, that Henry does qualify for assistance.


We don't deserve TEFRA.  We don't deserve anything, really.  We are just regular human beings who sin and mess up just like anyone else.  Even though we've been given these journeys of illness and have been called to the special-needs life, as well as to the life of a bereaved parent, we are not super-heroes.  God hasn't called us to these things because He knew we could handle it.  He knew we couldn't and that we would need to rely on HIM for our every need (EVERY need).  I am grateful for this, Dear Friends.  A constant need to rely on the Lord.


I never thought that my family would receive help from the government, but we do and it's important to Mike and I that others know that.  We want people to know that there are "normal" families like ours who need the extra help from the state.  There are families who work extremely hard and go above and beyond to provide sufficient healthcare needs, but sometimes those needs are enormous and sometimes you just can't do it on your own.  Sometimes, even though you are doing everything you are supposed to be doing, even though you may have a really good job with a great salary, you may still have a hard time paying for all of the things that come along with the special-needs life, and that's okay.  We want everyone to be more open-hearted when it comes to those who need and receive help outside of themselves.  In the Bible, the early Christians clearly had this in mind as they shared all that they had.  As Believers, we are specifically called to help those who are sick and poor (in body and spirit).  This goes beyond the Church's doors because the needs are so great.  When you pay your taxes and give towards these government programs, you are truly giving to families like ours - you are giving like Jesus called you to.

I want other families to know that the struggle is real and it is okay to need help.  It's okay to get help from the state.  That's how God has provided for us, without a doubt!  He has provided for many of our friends and for their children that way as well.  Because of programs like TEFRA, Ellie Kate lived a full, happy and long seven years and Lucy is alive and thriving.  We could not provide even a portion of what they've needed without the help of the Father, the help of friends, family and strangers, and without the help of the government - both state and Federal.   Being in this situation has taught us humility on so many occasions, and it's a quality we feel the Lord is continually growing in our lives as a family.  It is a GOOD thing to continuously be taught humility; to continuously be taught that you are not in control and that you cannot do it all.


It's beautiful to watch Our Father at work, taking care of us and providing for all that we need and giving us many things that we want.  TEFRA is both of those things.  It is something that we need to help Henry receive the treatment, medication and therapies that come along with PANDAS and with epilepsy.  It is also something that we've wanted because we know how much it has helped us with Ellie Kate and with Lucy, and I can't imagine trying to live our lives paying for part of Lucy's needs (meds and equipment that aren't covered at all by insurance), paying down Ellie Kate's medical bills (we are almost there!), paying my IC medical bills, and now paying for Henry and all that has and is going into his care.

PS:  We were able to have Rosie (the handicap-accessible van) fixed!  That is a huge answer to prayer.  She is coming up on 100k miles, so we are praying about trading her in or really just want the Lord wants us to do in order to keep us all safe while driving.  Thank you for praying alongside of us!

Oh, Father!  I am so grateful and humbled by this blessing.  I know it's been given to us, not because of something we have or haven't done, but because you've promised to always care and provide for us, all while getting the glory.  We praise you for your faithfulness and we declare today that you ARE Jehovah Jireh, Our Provider!  

Ryan

Big Prayer Requests

We have a few big prayer requests, and we would greatly appreciate your prayers and petitions on our behalf.  Mike and I most firmly believe that we are called to bear one another's burdens.  As Believers, we are called to pray for one another - to speak to the Father on behalf of our fellow brothers and sisters in Christ.  It's important for us to pray for each other because we learn that we cannot live alone in this life - we are called to live together, in community.  It's important too because it keeps us humble before our community and before the Lord.  Prayer allows God to be glorified, and that is why we ask for it (and it's why you shouldn't be scared to ask for prayer either!).

First of all, I want to share a BIG PRAISE!  

Our Sweet Boy has been doing SO well!  We are incredibly grateful for everyone's support, encouragement and prayers where Henry is concerned.  The Lord has lifted Henry's burdens for the last few weeks, and we've seen him slowly unfold into full confidence and joy.  Even in the last few days, we have seen a new spark and happiness in Henry's eyes - I just cannot tell you what that means to me as his mommy!  Mike and I are praying that this peaceful time will continue in Henry's mind and body, and that Henry will excel in all areas - physical, emotional, and spiritual.  Thank you, Lord for lifting this off of Henry!  We ask for more, Father!  


Prayer Requests:

1.  TEFRA - You may remember me mentioning this in previous posts.  TEFRA is supplemental insurance through the state of Oklahoma, and we are finalizing Henry's application for this program at the end of this week.  It's a tough application with many details and components, and I'm so grateful to just be done with it! However, we are praying that Henry will actually be approved for TEFRA, which would act as a secondary insurance.  We are blessed to have this for Lucy Belle, although not all of her items are covered by insurance (many are not FDA approved and thus cannot be covered ).  Little Henry's medical bills have hit us hard, and we want to make sure we can keep up his care, and that he can receive all of the services that he needs.  We NEED TEFRA for Henry.  Please pray for favor, and that the Lord would work in the hearts of those deciding.  Pray for those looking at our application - that their hearts would be tender towards Henry and that they would understand the medical issues he has been facing, as some of them are rare (ex: PANDAS).  Having TEFRA would help us in SO many ways, I just can't even tell you!  And we turn it in on Friday - EEEKKK!!


2.  HANDICAP VAN - As we were driving home from Henry's counseling session today, it sounded like we hit something on the highway, except we didn't see anything.  We heard the sound a few more times, and I really was thinking it was just a bag or something caught up under the van.  Then we pulled into our driveway and heard a loud sound, along with a giant scrape - UGH.  I don't know what the piece is called exactly, but a big piece of metal came out from under our van.  It's about three feet long, so it really is a big thing.  I don't know what this means for the van or how we will be affected.  I just know this:  We NEED that van for Lucy Belle to get around in.  The Lord was SO gracious to give us the van when I was first pregnant with Lucy.  It was perfect for EK and now it is perfect for Lucy Belle.  The back lowers and we can wheel her in and drive, all while she stays in her wheelchair (fastened to the bottom of the van, of course).  It's incredibly safe and unbelievably convenient.  I'm nervous about it all, although I know the Lord is in control.  He gave us the van and He will fix it.  Would you pray that the van would be fixed quickly?  Pray too that the Lord would give us wisdom as we try to figure things out with this priceless item.


3.  SCHOOL - This week, we were able to start Henry's IEP (individualized educational program) for next school year.  We have been treated very well by our current school, and they have so kindly walked me through the wild maze of 504's and IEP's with an able-bodied child (it's SO much more difficult than planning for the girls).  However, Henry is still asking to go to his old school where he attended pre-k; the school where he attended with Ellie Kate.  This is also the school where Lucy now is (I know that's hard to follow, ya'll).  Would you pray for wisdom for Mike and I?  God has given us dreams but He hasn't opened doors.  In fact, we feel like He has closed a few, but we don't want to close them for Him.  We want to be open to what He can and could do!  As Henry's parents, we just want him to feel safe and happy.  I know he will learn better once he feels those things as well, no matter where he attends school.  Pray that the Father would cause everything to fall into place quickly so that we know what to do for this coming fall.


4.  ENCOURAGEMENT - It's so interesting . . .  after you feel God reveal Himself to you in intimate ways, you can, in the next breath, feel far from Him.  That's how I feel this evening (that's why we can't trust our feelings, am I right?).  God has RICHLY blessed Michael with a fantastic job, which he absolutely loves.  This is something we have prayed about for years!!  And Michael is an excellent provider, continuing to grow and excel in his industry.  However, when you have children with special needs, when you've buried a child without life insurance (Lucy and Ellie are ineligible because they were born with NKH), and your wife has an autoimmune disorder/health issues as
well . . . you don't always SEE the fruits of your labor.  I know Mike feels this way a lot, and I even feel this way, even though I'm not bringing in income!  It is terribly frustrating. I wish I could make it different.  I wish I could take that off of my husband so that he wouldn't have to carry it.  We are choosing to focus on the Lord and on the fact that He gives us ALL that we need.  He always has given us even above and beyond what we've needed as a family!  It's just that we long . . . I mean, really and truly LONG to be in a position where we no longer need so much. That's where our hearts are tonight.

Thank you for faithfully praying for us - for bringing us before the throne of God.  I don't know why so many of you have stuck with us for the almost ten years of this roller-coaster, but I sure am grateful that you have!  Not only do you stick with us, you encourage us and love us in tangible ways, over and over AND OVER again.  It is beautiful to me.  It is life-changing to my family.  Thinking about you and your love for us literally takes my breath away.

I can't wait to follow up and tell you how the Lord decided to answer these prayers!!  

Much Love,
Ryan