A Thrill of Hope!

There have been some difficulties with my blog over the last two months; for some reason, only those who subscribe to it are able to actually see it in it's entirety.  I sincerely apologize for this and want you to know, I am working to find a remedy.  For now, I will keep blogging and sharing the link to the blog.  You can, "follow" me officially on Blogger.com and receive the updates directly in your inbox.  I will also cut and paste each post to my Facebook account, in hopes others will be able to see it there.  You've so faithfully loved and followed us since December 2005, and we want that to continue for as long as the Lord sees fit.  
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Gorgeous views on Bowen's Birthday, reminding me of Ellie in Heaven!

The Holiday Season is coming to an end.  Twinkling lights, vibrant colors and stunning Christmas carols surrounding us as we are out and about, are all being put away.  It makes me sad.  I want to hold on to this Season just a bit longer.   It's Ellie Kate's Season, the time of her birth and her death, and all of the lights, colors and music remind me of my Precious Daughter.  I miss her.  I miss everything about her.  


It's been six years since Ellie Kate took her last breath on earth - writing that even brings a heaviness to my chest.  Some would think I would be much more "over it" by now, but I assure you, I will never be "over" my Daughter's earthly death.  I will always miss the sound of her voice, although she did not speak.  I will always miss the way she entered a room, although she did not walk.  I will always miss the way she miraculously breastfed as a baby, then ate by mouth for a year before needing a feeding tube; to this day, it is difficult to set and gather around our dinner table because the obviousness that Ellie isn't there.  In our Family, someone is always missing.  

“If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to "glorify God and enjoy Him forever." A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.” 
― C.S. Lewis, A Grief Observed

I've come to see the last six years very much as I see the Advent song, "Oh Come, Oh Come, Emmanuel" (which has been my very favorite Christmas song for as long as I can remember).  I feel the longing in the lyrics. The melodies groan within me as a people groan for freedom and redemption.  I see myself as a Hebrew, waiting for God to deliver me from Egypt. I see myself as a Hebrew, waiting for God to deliver me from the Wilderness.  I see myself as a Hebrew, waiting for God to bring my Savior.  My Savior HAS come to Earth and I relish in that incredible, undeserving Gift.  I've accepted His gift of Eternal Life and yet as Believers, we still call upon Emmanuel - we still long for Him to move in our lives.  For me personally, I've longed for Him to move us out of certain Seasons (seasons of death, seasons of constant need, seasons of fear, etc).  I've been in this waiting period for a very long time.  In fact, I vividly remember singing this song when Ellie was first on the ventilator, just a few days old.  It's a desperate cry to the Almighty and I know that cry very well.  

“Knock and it shall be opened.' But does knocking mean hammering and kicking the door like a maniac?” 
― C.S. Lewis, A Grief Observed

“For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 
― C.S. Lewis, A Grief Observed

This year, for some reason, God has changed my heart-song for this season.  I'm in awe of this change really, and wondered what God might be doing by changing my heart, moving it on from, "Oh Come, Oh Come, Emmanuel" to, "Oh Holy Night".  A Dear Friend of mine has also been moved by this glorious hymn over Christmas, although the Lord has used in to move us both in very different, beautiful ways.  He's good and creative like that.  

 "A Thrill of Hope . . . " these are the words which God has sweetly placed in my Soul this Season and as we begin 2019.  I jump in excitedly, EXPECTANTLY, now not only for my Emmanuel to come, to step in, to deliver and make things right - but because I am HOPEFUL and thrilled for all God WILL DO through our weary hearts, minds and bodies.  

"A thrill of hope the weary world rejoices,

For yonder breaks a new and glorious morn;

Chorus

Fall on your knees, Oh hear the angel voices!

O night divine! O night when Christ was born.

O night, O holy night, O night divine". . . 

HOPE - for what is to come, because of what has been. 

A GLORIOUS new dawn is seen on the horizon.

The Divine Movement of Father, Son and Spirit 

is worth falling on our knees for!

HOPE.  I speak of it often, mostly in reference to Hope Link.  What does it mean to me today, in this Season, in the now?  HOPE - to me, for this New Year, it means NEW LIFE, goodness, joy; the thick, loving and happy presence of God.  HOPE means GOD is moving me (us) on, moving forward, out of the marsh and muck and onto solid ground.  I see it as a season of safety and light. Merriam Webster definition of HOPE

Job 8:11-13 (NLB), "those who forget God have no hope. They are like rushes without any mire to grow in; or grass without water to keep it alive. Suddenly it begins to wither, even before it is cut".

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Seeing this Christmas Season through, "A Thrill of Hope has been fragile, but sweet.  Sometimes, it's hard to let yourself "hope"; I'm sure many of you know what I am talking about.  This Christmas, as in the last six, I've clung to Jesus like my toddler clings to her daddy when she's really scared, crying-out for him, even in her sleep.  He IS faithful.  He IS true.  HE is the ONLY way I make it through this life of unexpected things, and HE wants to be there with you, too.  

Jesus is God's gift to us, fully-God and fully-Man, He lived in human form, experiencing everything we do - hunger, thirst, anger, fear; He longed for friends on earth and called out to His own Father, clinging to Him when He needed Divine wisdom and help.  He lived a perfect life, for you and for me.  He gave His life, for you and for me. He died a criminal's death, a horrific death and torture, then was buried, as a human.  His earthly body died.  God the Father breathed new life into Jesus, and He came alive again, proving forever and always that God Our Father has POWER over DEATH!  

Romans 1:17 Living Bible (TLB)

17 This Good News tells us that God makes us ready for heaven—makes us right in God’s sight—when we put our faith and trust in Christ to save us. This is accomplished from start to finish by faith.[a] As the Scripture says it, “The man who finds life will find it through trusting God.”*

Precious Friend,  I want you to know about this New Life offered through Jesus Christ - Abundant Life here on earth and Eternal Life after death!  Your life can count for eternity.  When you accept Him as Savior, He promises to never leave you nor forsake you.  You will NEVER be alone, on your own.  He doesn't promise a life without problems, without loss, but He DOES promise to be with you, every step of the way.  I personally couldn't possibly get through one day of NKH, one day of PANDAS, one day of child-loss without having Jesus Christ to carry my burden.   Because of Him, I have HOPE.  He placed Hope within me, an expectant joy for how He will move in and through me.  And, because of my personal relationship with Christ, I have the assurance that I will be with Ellie Kate for eternity!  I want you to have that assurance, especially going into the New Year.  You can start 2019 off being REDEEMED, renewed and restored - there are no magic words or prayers to pray; just share your heart and give Him your everything.  



With a Thrill of Hope,
Ryan

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Oh, Father!  I am yours. Everything I have, everything I love, I lay before you.  I give you all of my dreams, my desires, my wants.  I give you my thoughts and longings, my fears and failures.  Truly, I am nothing without you.  

YOU, Emmanuel, the Great I AM, God With Us.  YOU are EVERYTHING, you've created all things for your glory and for some reason, you were thinking of us when you created it all!  For OUR good and for YOUR glory - why are you so overwhelmingly generous?!?   I am so unworthy of the blessings and redemption you've bestowed. 

You have rescued me from the Valley of the Shadow of Death.  You continue to rescue and relieve me from despair.  You carry my burden and provide for my needs, above and beyond what I could ever hope or imagine!  

THANK YOU for giving me a new song, literally.  A THRILL OF HOPE - I am entering this New Year with thrill and excitement, knowing you are with me; you light my path.  Oh, Father!  I need you for every breath, every thought, every decision.  

I choose to put my trust and hope in you, Creator of All Things, the Protector of my Soul.  Everything I have is yours - my marriage, my children, my talents, my gifts, my earthly possessions; use it for your glory in 2019, Blessed Lord.  I lay it at your feet.  

Ellie Kate's Month of Reckless Love!

Last Tuesday, Ellie Kate would have turned 13 years old but in our hearts, she will forever be SEVEN - the perfect number, the number of Completion, the number of God.  We are so grateful for the precious seven years we had with our curly-headed daughter; it's through Ellie's life that God gave us a mission as a family, as a couple and as individuals!  I never thought I would be called to the world of special needs/medical-fragility but I was, all because of MY Daughter. 

Through Ellie Kate, I have learned more about love than I ever thought possible.  Real, true, perfect LOVE - RECKLESS LOVE, a love which surpasses understanding and goes beyond rules or limits we so often set.  This Reckless Love calls us to serve, to be and to DO - even when it's least expected, ESPECIALLY when it's least expected - going out of our comfort zones, choosing to give of ourselves, no matter what the cost.  THIS is how God loves US.  THIS is how we are called to love one another, above and beyond, giving all we have, going outside our conveniences, even laying down our lives for others. 

It is with this thought, God led us to create, "Ellie Kate's Month of Reckless Love", which spans the month of December.  Ellie was born on December 4, 2005 and met Jesus face-to-face, December 23, 2012.   Although sometimes bittersweet, we choose to CELEBRATE the entire month of December by honoring our Ellie Kate with acts of Reckless Love towards the community around us.  In the past, we have hosted parties at OU Children's, collected books and gifts for that hospital so close to our hearts; we've also adopted families for Christmas and we've invited you to do the very same, joining us, every step of the way. 

Ellie Kate's Month of Reckless Love 2018 . . .

#EKMonthofRecklessLove

#EKspreadthelove

SHARE THE LOVE/LOGO/MESSAGE

• We invite you to change your FB profile page to Ellie Kate's logo, spreading the word about Reckless Love, bringing opportunities to share about Our Girl. 
• During now and December 23 (Ellie's Heaven Day), Recklessly love those around you by mowing a law, bringing a meal, dropping off a gift card, and more!  
• Share a picture of your expressions of Reckless Love, even printing off the logo to share along with your acts of Reckless Love! 

*CHRISTMAS CARE BASKETS  We invite you to come alongside OKC Hope Link, donating Christmas care-baskets, elaborately and specifically made for eight, chosen families with our Hope Link Communities.  These are families hit with the unimaginable - a child with a rare, serious or undiagnosed disorder.  Some are born with their diseases and some are diagnosed after horrible accidents.  Precious families, like those within this group, are too often forgotten by the world and by the Church as a whole.  They are isolated because of disability and overlooked because of financial, emotional and mental stressors which come along with raising an extra-special child. 
Christmas Care Baskets are to be delivered BEFORE December 20th, just in time for Christmas (we will happily deliver in your name)! 

• Adopt a basket individually OR as a book club, Sunday School Class, Life Group, etc. 
• You can donate individual items for our Christmas baskets, contacting me for clarification on gifts.  
• Baskets can be themed, such as, "A Night at the Movies" or "Christmas Love" and include the essentials for a special night. 
• We hope to include gift cards for meals, gas and groceries with each Christmas basket, as well as practical and fun gifts for those of all ages.
• If you'd like to take part, contact me via messenger or email: tullyryan@hotmail.com

The perfect example of a Christmas Basket for a special-needs family!

"ELLIE KATE'S WISHES" with NKH Crusaders
Every December, NKH families from all over the world are encouraged to apply for an, "Ellie Kate Wish".  The wishes consist of things insurance won't cover, important items the child/family needs.  This special program was started by my Dear Friend, Kristin Archibald who founded NKH Crusaders, the main fundraising foundation within (and without) our NKH Community (Non-Ketotic Hyperglycinemia).  We are so grateful to have Ellie Kate honored in this way and feel so loved, knowing other members of our NKH Family are blessed because of her life!

Two Precious, past Recipients of Ellie Kate's Wishes through NKH Crusaders!

 GRANT an ,"Ellie Kate Wish"!!  Ellie Kate's Wish through NKH Crusaders

THANK YOU for loving us by participating in

Ellie Kate's Month of Reckless Love 2018. 

You will never know, this side of Heaven,

how much it means for you to share Ellie's story,

to say her name and most importantly,

to help us spread that beautiful,

Reckless Love we continue to learn,

because of her life. 

With Hope, Love and Gratefulness -

Ryan



*OKC Hope Link reaches families whose children suffer from rare, serious and undiagnosed disorders of all kinds.  We also serve families who have lost children to those same issues.  Hope Link is a tight-knit family. We cheer each other on during the hard times and hold one another's hands during the dark days.  We are different in diagnoses but our journeys are very much the same. 

Henry, Home and HOPE

We're home from D.C. and have successfully finished Henry's treatment!  Today is December 1st, the beginning of Ellie Kate's Month of Reckless Love and yet, I find myself falling a bit behind on it all.  I promise to soon post about EK and how YOU can show reckless love this Holiday Season! 
It is with great excitement I share this detailed update on Henry's recent medical trip to Washington, D.C.!  This trip has been in the works for months now - Henry's specialists here in Oklahoma "encouraged" us by sharing, our only real hope, the only possibility for PANDAS relief and for or a chance to see "Our Henry" again, was for him to receive the specialized IVIG treatment.  This was the very same treatment we blessedly received through an epilepsy grant, just a year earlier from which we saw great results!  The goal is, the more IVIG sessions completed, the better the outcome is for the patient.  Henry's chance is higher now, since this is his second round of treatment, for which GOD has provided. 

Unlike our previous trip for treatment, this chilly travel was provided by YOU - our precious friends and supporters, even with a few strangers jumping in.  In reality, we fully believe it was Our God, Jehovah Jireh ('The God who Provides') who made this trip happen, who orchestrated and allowed every dime to be given, every travel plan to fall in place (big or small), and SO much more!

Bottom line:  I wouldn't be writing this now if it weren't for your sacrifice and generosity, all of which does not fall lightly on my spirit or mind; in fact, it will stay with me forever, along with your precious prayers, messages and calls.  

 Go Fund Me Page - LOOK at what YOU did!!!!!!!!!

Dr. Elizabeth Latimer heads the clinic where Henry was seen and ultimately, she signed-off on this specific treatment, agreeing with our doctors here in Oklahoma.  Dr. Latimer is one of the leading doctors and researchers on PANDAS/PANs, even appearing in the recent 20/20 program about the disease as well as in the documentary, "My Kid's Not Crazy".   

 

 

Once we had arrived and were situated in D.C., and once we check-into the office, Dr. Latimer read through Henry’s charts once again, and giving the final stamp of approval on the treatment. Even though our entire trip was based on receiving that treatment, it was still a relief to get that very final sign-off.  

 

 

The nurse started Henry’s IV infusion Monday morning, November 19th and he was an absolute warrior through it all, not even batting an eye when the IV was placed.  Because of Ellie and Lucy, H has grown up around needles and syringes, both pokes and prods.  What an intertwined blessing of which I could never dream up: Our God has seemingly, both given and allowed, all of these things within the lives of our children.  My Babies benefit from one another, even in the darkest, scariest things; even when time transcends the action, memory or experience.  They are each other’s teachers and students, mostly without knowing, and every part of it makes a lasting, changing, positive impact on the life of the other, however long that might be.  What an indefinable gift, with layers beyond my comprehension! 

 

 

Both infusion days went off without a hitch.  During the procedure, Henry played video games on his own and with the two other children receiving infusions that day.  Both of the fellow-Infusers had been diagnosed with PANDAS; One was a young teen girl and the other, a boy, exactly Henry’s age.  I took GREAT JOY and comfort in hearing Henry connect with these other precious kiddos.  I giggled with satisfaction upon learning the slightest details the children openly shared about themselves. Hearing about their own quirks, what makes them tic (quite literally, as all three have been diagnosed with various tics).  I drew-in deep, heavy and happy sighs of relief for Henry (sighs only a mother-figure can understand), as I heard our fellow infusers chat a million miles a minute, just like H, almost shouting with excitement in their responses, “Yoouu feel that way sometimes, too!? and, “I get scared to eat, too! ", followed by, "Yes! Even when I’m hungry, I get scared!”.  Priceless.

 Taking Infusions like a BOSS

Sitting among fellow PANS/PANDAS families during treatment was also a very-welcome, yet unexpected event, and I walked away feeling as though I had been to an NKH Conference or an extended Hope Link support group meeting.  It was incredibly sweet.

Being REAL and RAW here:   I have accepted NKH, special-needs, the world’s limitations, the finality of what is defined as a, “terminal” disorder.  I have mourned the death of dreams I once had for the little girls I'm blessed to have birthed.  I can share those dreams without getting super emotional, even though it's been a long road, even though it's taken months and years to wrap my mind around.  I am not yet in that place with Henry.  I don't believe (nor have a reason to believe) PANDAS will take Henry's life and have no evidence he will eventually pass-away because from complications of this confusing disease.  However, I'm having a hard time accepting the fact that part of PANDAS is literally a, "mental" AND "physical" disorder.  This Child, whom God prompted us to have; the One the Spirit told me would be an NKH-free, "healthy" boy .  .  . isn't healthy.  He may not get back to his old self, to who we really know him to be, and that both scares and angers me.  Most of all, I just want to make things better for Henry. 

Dealing with the stress of travel - he was so brave! 

Since we've been home, Henry's had a difficult time, all-around.  This time, he has been incredibly nauseas from the infusions, vomiting still  The first few days, Henry was EATING, which was quite the welcome sight to us, as his parents!!  The feeding-frenzy has slowed-down dramatically and today, there were heavy tears because he was "starving", but couldn't eat, "anything" - it all hurts his tummy (which we've had checked out). 

Since the infusions included strong steroids, Henry has been bouncing up and down and all around, often staying up most of the night in what we call a "happy-wild/manic" state.  Henry has been HAPPY but today, had a big setback with his friends.  I'm wondering if that will continue to worsen IF his PANDAS will worsen?  I don't know - no one knows until we get there. 

For now, here's what I'm clinging to and praying for .  .  .

• I'm praying the Father will fill us with HOPE instead of despair. He's faithfully reminding me that He provided this treatment for a PURPOSE and even if I don't see transformations just yet, I need to give it all time.  God makes ALL things beautiful, in HIS time.  I'm praying God will use these IVIG transfusions for Henry's GOOD and for God's GLORY!! 
• I am praying God will set Henry free from PANDAS, as he truly compares it to being tied to it or locked into it. 
• We are praying God will heal Henry's brain, specifically the frontal lobe. 
• We are praying for our other children, for comfort and PEACE - I so desperately want a home of PEACE and PANDAS threatens that everyday. 
• The doctors say it will likely take around two months for the infusions to start showing their benefits, but we are asking the Lord to do it even NOW

  
  

Friends, FOREVER we are grateful for your help in getting our Son the help he needed, help we couldn't provide on our own.  You stepped in, showing us Reckless Love, beyond imagination.  I look forward to keeping you posted on all the GOOD things yet to come for Henry! 

With Hope,

Ryan

"At times, our own light goes out and is rekindled by a spark from another person.  Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” - Albert Schweitzer

 

“Thanks be to God for his inexpressible gifts!”, 2 Corinthians 9:15

 

Fear and Hesitation

My heart is beating quickly, in anticipation of something big and exciting, although I cannot truly foresee what that might be.  What I HOPE for it to be is the miraculous provision of Henry's IVIG treatment, which will help to cure and calm his PANDAS.  I'm in an expectant place because I know we NEED this; HENRY needs this in order to survive and in order to keep his faculties in check.  He needs this if he wants to become a contributing member of society and I do not say that lightly.  We know God has gifted Henry in multiple ways, ways that can and will bless the world around him but right now, PANDAS suffocates ALL of that.  It steals the good.  It blows thick, heavy smoke over the bright like a heavy, black cloud, preventing Henry from seeing clearly and preventing others from seeing Henry clearly, for who he truly is.  

IVIG and PANDAS (click on purple link for more information)

If you look at Henry from the outside right now, you can see the affects of PANDAS - he has lost weight and is dehydrated because he's afraid to eat or drink certain things (hysterically afraid); this is a newer symptom of his disease.  Henry's skin is pale and weak,  those big, brown eyes of his are sunken-in, with dark circles underneath.  Henry isn't sleeping - PANDAS isn't letting him but rather, it's making his mind go on overload almost all the time.  Last night, Henry showed me a picture of this new item he really wants.  He ended up showing that photo to me 27 times and finally, he apologized and said he "couldn't stop showing it" to me because his "mind keeps telling me to look at it and show it to you".  Imagine having those types of thoughts, especially as a child - uncontrollable thoughts, constant thoughts about the same thing, and those thoughts wake you up in the middle of the night; those thoughts hit you when you are trying to rest or when you just sit down to attempt school work.  He cannot control the invasive thoughts and it's tearing him up.  He's hungry but won't eat, tired but can't sleep, needs to do school work but cannot focus - understandably, all of this causes anger and resentment and all sorts of negative feelings, "WHY CAN'T I JUST FEEL NORMAL?!".

20/20 Story on PANDAS (click on purple link for more info/to watch video)

US News Report on PANDAS (click on purple link for more info/to watch video)

HESITATION: I've hesitated writing this post - I've put it off for so long and although I have posted on Facebook a bit, I still feel as though I'm holding this tightly to my chest, in a corner, slightly hiding from everyone.  I am so tired of asking for help (which I will get to at the end of this post)  I mean that with all of my heart.  Our Journey started in December 2005 and literally since that time, we've been sharing our story with you and you've been supporting us in so many ways - too many to mention, really.  I know many have "compassion fatigue" where our family is concerned and I hate that - I hate that we've driven you to that place of being tired/overwhelmed by the sorrows and needs of others. 

A "SEASON"?:   Yes, this may only be a "season" for us but, it has been an extremely long season, 13 years to be exact, and some of you have been with us from the beginning!  I need you to know, when we married, our goal was to love and serve others - that was our dream.  Our dream was NOT having others love and serve us.  YES, we ALL go through seasons of need and all of us get to a point of being humble and broken, in need of relationship, love, grace, prayers, and more.  I want you to know, I often cry-out to the Lord and wonder WHY our "season" has taken so long, wondering if this "season of need" is meant to cover our entire lives?  I surely hope not, Lord!  I cringe at sharing the deep, the dark, the needs anymore bc of that fear in my heart - fear of causing even MORE compassion fatigue, worried that by sharing again,  others will leave and walk away because it's "too much" or because they are tired of hearing all of the bad.  


TRUTH:  I love having the opportunity to share our Journey with others.  I do NOT like sharing when it seems to always be bad or dark.  However, the Lord reminds me now that I cannot help if this Season He has called us to, the one which He has kept us in for a Divine Purpose, is often full of heartache, loss and need.  I think of Job - I'm sure Job grew weary of his own journey being so "bad"and sad.  I know, part of the very reason of our journey IS indeed, for me to share - I'm to share the good, the bad and the ugly of this special-needs, medically-fragile, child-loss, life of a Believer because the World (and the Christian Community) NEEDS to see this part of life and needs to know how to go and love this people group with the love of Christ.  
So, I will choose to continue to share not only for  our family, but so these groups of people, these special individuals and their families will also be loved well and served, provided for in all sorts of ways, with the reckless love of God, through fellow Believers. 

I choose to believe God has a continued purpose for our continued Journey.

I choose to believe and recall the TRUTH, that God has allowed this Journey, 

He has placed us here for Divine Purposes.  

I choose to share, even if I feel uncomfortable; 

I choose to put-away my earthly fear in order to fulfill His purpose within me.

I choose to remember and cling to the fact that I am not responsible for how others interpret what I share; 

I realize not everyone will always know my heart nor 

always see where I am writing from.  

I choose to believe God will cause ALL 

of my sharing to work for MY good and for HIS Glory. 

I choose to believe God will use ALL interpretations of what I share, for HIS Glory.  

GO FUND ME:  Stepping out with the Lord's confidence, I share with you our Go Fund Me page, which was set up by two dear friends of mine - friends who have physical struggles and diagnoses of their own, yet still wanted to help our family.  Some of you have already seen this page on Facebook.  Please, feel free to share the entire link, however you see fit, with whomever you see fit.  Sharing the page alone will bring awareness to PANDAS and to Henry's struggle.  We know not everyone can give and we certainly don't expect that.  Please, only give and share as the Lord would see fit.  As you can read on the page, there is also a way to give and receive a tax-deduction, if you are interested.  Paypal can be an option as well.  

Go Fund Me for Henry McLaughlin (click on the purple link)

After meeting with Henry's doctors again this week, we KNOW he needs IVIG immediately.  That won't happen in Oklahoma (the 'immediate' part)- it's a ton of red tape, all the way around, even without insurance paying.  If we go to D.C. and receive treatment from Dr. Latimer, a leading PANDAS specialist who administered Henry's first treatment,  we know exactly who would be giving it, where it would be given, how, etc. If we do make it to D.C., that IVIG formula would only require one more infusion, IF that.  No matter how or where we do it, IVIG treatments will each cost approximately $13000.  

Thank you, Dear Friends.  Thank you for taking the time to read through this message, thank you for educating yourselves not only about NKH, but also about PANDAS.  Thank you for loving us and serving us as the Lord has led you, all of these years.  Please join us in praying the Lord will provide for Henry's IVIG treatment and if that means going to Washington, D.C, pray He would also provide a way to and from.  We are forever grateful for you.  I am forever grateful for you.  

Love Comes from God

I John 4:18

…17In this way, love has been perfected among us, so that we may have confidence on the day of judgment; for in this world we are just like Him. 

18There is no fear in love, but perfect love drives out fear, 

because fear involves punishment.  

The one who fears has not been perfected in love.    

19We love because He first loved us.…

With LOVE, Amidst My Fear - 

Ryan