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