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

 

An Upcoming Milestone and Movements of the Heart

So, it's been a while since I've posted an update on our family.  I will certainly do that here on this blog but as usual, I want to share some things God has laid on my heart.  You see, I'm on the verge of turning 40 - yes, 40 - later this month!   I've been settling my heart on so much lately.  I'm focusing more on my family and less on social media and the world around me.  

My passions are still the same, loving and advocating in the world of special needs, disability, and child-loss, but I've found IMMENSE JOY and PEACE the last few weeks, staying away from "noise".  

While I can hardly believe I'm about to hit this 40th milestone, 
and as the stun of it all slowly wears off, 
God graciously reminds me of His Unwavering Faithfulness, 
and He's done this away from the noise.  

Last weekend, I spent time with my best girlfriends from college (who are still close friends of mine today).  It had been too long since we had all been together, breaking bread and talking about life and even longer since we had been in college (20 years of friendship!).  The main theme which kept coming up was GOD.  Suddenly, amidst our conversation over yummy wine, I was taken back to my college days, days that were full of a lot of personal heartaches as I struggled to find out what I believed on my own, as I struggled to find out who I was apart from what I had accomplished up until that point. 

It was a scary time in many ways, as I left an extremely protected environment at home, released into an environment that was unlike any other I had ever experienced before.   I absolutely admit to making many wrong choices and many times, I didn't like who I was or what I was doing during that time in my life. Of course, it's totally normal for young people to go through this at some point - some go through it during high school, some during college and some even later on in life.  All of us must face the BIG things - who we believe, what we believe, why we believe it and it's taken me up until now to really sort those things out.  No, I don't have everything figured out in any shape or form, but I AM more grounded and I know who I am more than ever before; I know what I believe and I feel more secure than ever, for which I am extremely grateful for!

90's Girls, For Sure! 

So, back to the dinner with friends - I remembered all of those feelings from 20 years ago and how this group of friends stuck by me through ALL of the ups and downs, the messiness and wonder of life at that time.  Our bond has never broken because of our FAITH in the Lord Jesus Christ - knowing He is the Lord of each of our lives, knowing He is the Lord of each of our families, knowing He allows or causes all things in each other's lives, in the lives of our children, and more!  It was so beautiful to look around the table that night, knowing we've walked through children in the hospital, rare diseases, catastrophic diagnoses; troubles in our marriages, job changes, big moves, and more - God has brought each one of us through all of it.  Sweetly, He's allowed us to walk through it together.  He had a purpose for all of the ups and downs and brought us closer to His heart!  He has made us better women, better mothers, friends, wives, sisters, daughters, and Believers and only HE can redeem all of it for His glory!

I think back to some lonely times when I had no idea what God would do in my life or with my life; how would my life even turn out?  And just as He has walked with me and with my friends together, through life and death and everything in between, He has FAITHFULLY walked me HERE, to where I am now at 40 - this beautiful, messy, broken, happy, intense, journey with Mike, Conner, Ellie Kate, Henry, Lucy, and Bowen Jane.  And while I wouldn't always have chosen the hard places, the dark places, and broken places, HE has a purpose for it all and I can TRUST Him.  He has allowed things and caused things to happen, for OUR good and ultimately, for HIS GLORY!  

Young Mamas (notice a pretty-in-pink Ellie Kate on my lap)

Now, we sit as mothers and wives; made up of two counselors, a teacher, children's ministers, and two speech pathologists. Two of us have ministries going on in Africa, two of us have started non-profits and two of us have adopted children.  We have a total of 18 kids amongst us, ranging from ages 1-18 (which is crazy and fun) and our children proudly come from a rainbow of backgrounds including Hattian, Hawaiian and Hispanic!    Seriously, if you would have told us, back when we were in college, that THIS is where we would be, living THESE beautiful lives, entrusted with THESE precious Beings . . . I don't think we would have believed it.  It sounds too good to be true, in many ways!  But GOD has been FAITHFUL, going above and beyond what we could hope for or ask!

How precious is it that the Lord truly IS faithful?!  

I can SEE it and I KNOW it from my life in the past.  

I can trust that it will continue to happen in the future, 
always and forever, because of HIM. 

It reminds me of a song I learned in childhood; 

one I still find myself singing to this day . . . 

"My Redeemer is Faithful and True,

Everything He has said He will do;

Every morning, His mercies are new!

My Redeemer is Faithful and True."

Remember, especially if you are struggling or in a place of doubt or despair . . . GOD IS faithful and true!  

He will do everything He said He will do and SO much more - 

more than you could ever dream up on your own.

Ask Him to remind you of His faithfulness, 

just as He has so sweetly done for me; 

I know you won't be disappointed.

1 Corinthians 1:9 - God will do this, for he is faithful to do what he says, and he has invited you into partnership with his Son, Jesus Christ our Lord.

Numbers 23:19 - God is not a man, so he does not lie. He is not human, so he does not change his mind. Has he ever spoken and failed to act? Has he ever promised and not carried it through?

Hebrews 10:23 - Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.

*******************************************************************************

Family Update: 

LUCY: Sister Sue's had two hospital admissions since I last posted and continues to have good days and bads days.  One of the hospital stays was due to a severe staph infection and we are seeing signs of that returning tonight.  I will be calling the doctor first thing in the morning to see what we need to do.  Obviously, it isn't too concerning at this point but I have no idea how they will want to proceed since the first infection was so intense.

HENRY: This Little Man continues to respond well to the IVIG treatment he received this past summer in D.C.  We are STILL struggling with the payment, which was made upfront on our behalf.  We are still trying to get it approved by insurance and at this time, we are thinking of other ways we can find the funds to pay this large bill off.  IVIG has been LIFE-CHANGING for Henry, in the very best way!  In fact, he needs another round of it now.  We are absolutely choosing to trust the Lord in this as we have NO idea how the initial payment will be paid OR how to pay for another treatment, much less a trip to D.C. for the specialized treatment.  We've been working hard with our doctors here in OKC but at this time, there is no immediate chance (nor chance in sight) of receiving the needed transfusion here.

CONNER: He astounds us each and every day, showing us what a wonderful big brother he is to ALL of his siblings!  Conner doesn't have an easy job, we know that as his parent and yet, he joyfully plays and loves his siblings so well.  He proudly pushes Lucy's wheelchair to this day and now, even proudly pushes Bowen's stroller as well (not at the same time, of course). Conner will be in high school this fall, which is hard to believe for ALL of us (him included), so we treasure each day we have with our son, protectively overseeing all he does.  We are beyond proud of Conner and pray God will set goals and godly desires deep within the heart of this young man who has been entrusted to us.

BOWEN: Bowie Jane continues to be the light of each day for me, each moment, even.  All of us have fallen head over heels for this Little Girl who proudly knows each of our names (and says most of them correctly;)).  Each morning, she wakes and immediately says, "Momma!  My Momma?!", and her busy little self is all around the house each and every moment, never slowing down except to sleep.  This GIFT is not lost on me - we are ALL very much aware of this rare blessing we have in Bowen Jane.  Truly, she is a Gracious Gift of God!

Forever and always, THANK YOU for your continued love, support, encouragement, and prayer.  

I say it often, but not nearly enough, we live off your words of life - 

God gives them to us through you, just like manna.  

So, even if we don't respond or are very late in responding, please know that each message, 

text, and voicemail truly mean the world to us!  

I'm praying this week, for God to richly encourage your heart 

the way He uses you to encourage mine.  

Ryan Elizabeth (the soon-to-be 40-year-old!)

A Month of Reckless Love - Coming to an End

It's hard to believe that our month-long event, "In Honor of Ellie Kate - A Month of Reckless Love", has come to an end.  What could have been a intensely difficult month turned out to be something incredibly beautiful.

By remembering our Daughter, and by loving others in her honor, you have made our hearts come alive in such an encouraging way. We have felt your prayers, and have eagerly drank in every kind word and deed you have said and done for our family.  You have loved our family well, and we are forever grateful.

Our family has been inspired by your acts of reckless love for others.  You have loved the "least of these", giving to families in need, giving people rides, doing physical labor to benefit others; you have made meals for people, served in shelters, made gifts for families and individuals.  You've wrapped gifts for people, babysat, cleaned people's homes, and visited people in the hospital.  And who could forget the over 600 books and toys donated to OU Children's, Jim Thorpe Rehab, Wonderfully Made Ministry, and Ellie's special-needs classroom?!  You've donated time, energy, money, and love to those in need.  Each and every act of reckless love has honored Ellie Kate, and has let us know that she is not forgotten.  Ellie Kate is dearly loved and remembered.

Our deepest hope and prayer for each of you, is that you will truly know the Reckless Love Christ Jesus has for you and for your family.  Personally, there is no possible way that I could handle NKH in my daughters without the hope I have in Jesus and without the sustaining grace He gives me.  There is no way I could bear burying my Ellie Kate, nor knowing that apart from a miracle, we will one day bury Lucy Belle.  There is no way I could continue in life without the Lord Jesus and without my personal relationship with Him.

Jesus is the ultimate example of Reckless Love.  God sent His one and only son to this earth so that we might have eternal life, and that we might have abundant life here on earth.  There is no sin, no action, no deed that can separate you from the love of Christ.  His mercies are unending.  His grace is overflowing. His heart, His arms, are open to you! If you haven't accepted Jesus as your Savior, please consider doing so.  What an incredible time to give your life to Him - the New Year!  Life is so short; so fragile.  We must make our lives count.  We must give our lives to Jesus - every part of our being.  He wants to do beautiful things with our lives, just like He did beautiful things with the life of Ellie Kate!

With Jesus, there is no power in sin, there is no power in death.  We can have HOPE of eternal life in Him.  We can have HOPE of abundant life here on earth - where we will never be forsaken or alone, no matter what we go through.  Jesus is MY only hope, Friends and I want that for you as well!

Thank you for participating in The Month of Reckless Love.  Thank you for loving others without worrying about the consequences.  Thank you for loving us and for loving Ellie Kate.  Your participation in this month has moved us beyond words and has touched the lives of countless others!  Enjoy these sweet pictures of this past month!

Because of His Reckless Love,
Ryan