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

 

Lost Faith

Summer Break is over and by far, it has gone by faster than any other Summer I can remember. I'm sad about it, actually.  My Darling Niece, Isla Edwards, entered this world last month.  My Brother and his lovely twins, headed home to Europe recently, after six fast weeks of staying with my parents.  We've loved family time and staying close to home has been one of our goals.  In no way was I going to miss the birth of my niece and thankfully, I was able to be there for the entire thing, briefly holding her after the emergency c-section Rachael underwent (after around 15hrs of labor).   

Lucy's been extremely ill these last few months, with ER visits, suffering from new seizures, living with unbelievable spells of pain, and being hospitalized for c-diff twice, thus far.  Henry's suffered from an extreme PANDAS flare, the likes of which we haven't seen in well over a year, mainly because he needs a new round of IVIG - the same treatment he received last year in D.C. and yet, it's simply financially unattainable at this time.

Struggles, fear, doubt - lonliness in the trials, heartache in the journey; a roller-coaster of emotion, thought, feeling, and experience.  

Lost Faith
In this post, I'm sharing personal struggles, fears and doubts.  I'm sharing these because I believe it is healthy for us, as individuals, to do so.  We can help one another and encourage one another by sharing our burdens and our journeys.  In making ourselves vulnerable, we make ourselves, "real".  There is great beauty in allowing the world to see we aren't perfect, that we are indeed, needy individuals - in desperate need of friendship, support, love, and forgiveness.  All of our intimate needs can be met, WILL be met, in and through a relationship with God.  

This Summer, maybe even back to the Spring or even Fall, I started to truly doubt God.  My heart was hurting, my feelings raw.  In my heart and mind, I had spent my entire life, from as far back as I remember, surrendering everything to God, as best I could, and STILL .  .  . still, my world continued (continues) to fall apart - to fall into pieces, all around me.  

The PANDAS, the NKH, as well as the stresses and illnesses coming about because of those things, have held us captive as a family and as individuals.  Our hearts have also remained broken for dear friends who've recently suffered the earthly loss of their children, both within our Hope Link and NKH Communities.  We long to see God move in miraculous ways on behalf of friends suffering from long hospitalizations, life-changing accidents, and everything in between.  Life is hard and it isn't meant to be lived-out alone.  Contrary to some beliefs, NO man is an island and no man should try to live as though he is one.  It won't work.  It's not the way we are made.

Struggling with this lie has been a life-long struggle for me and I'm laying it all out there for you.  Sure, I believe God can, will and DOES perform miracles, does good, makes beauty from ashes, but it doesn't really happen for me or won't really happen for me.  When Ellie Kate was born with something genetic - something which literally CAME from MY DNA - that only convinced my belief that the "good", the promises, the miracles, the fairy-tales, were all for someone else . . . someone MORE obedient, MORE devoted, MORE called, than me. 

Over the years, I accepted this lie (although sad about it) because I really and truly gave God EVERYTHING - from my food to each class at school; from my friendships to my thoughts, from my hair to what clothes I would wear, to every move in my cheer and tumbling practice to every single word that left my lips, every single thought which popped into my mind. 

I'm not talking about a pity-party or bouts of depression, although those certainly have been a part of our journey. No, this is  something I have really struggled with and learned to accept, even live with.  But Friends, this is where FAITH steps in.  Without faith, I am nothing - without faith in my marriage and my partner; without faith in our doctors on behalf of our children, without faith in our school system, without faith in our counselors and more - well, we just couldn't survive, living a life of crippling fear and severe anguish.  I don't want to live that way.  I WANT to choose FAITH, to choose to walk by faith.  I CHOOSE a GOD I believe created me, designing me for a purpose.  

A Moving God
Around July of this year I chose FAITH, after months of letting DOUBT win, I was enabled to reach out for something more - LIFE and liberty within and without.  I did not do this because I felt like it - in fact, I felt the opposite.  Personally, I know this faith and the ability to choose God, only COMES from God.  I chose to surrender again, because the Christian Life, the life of the Believer, is one of constant surrender. We recognize we cannot possibly handle this life on our own.  We accept the fact that we need help, that we would be miserable within the intervention of a Mighty God and all that He is, WHO He is, and He IS who He promises to be.  

I've asked the Lord to help my unbelief.   I am willing to choose Him and I am in a spot where I desperately want Him - I want Him to take over my heart, consume my thoughts and be established as Lord.  I want to see God for who He truly is and I want to fully trust Him and His character.  Desperately, I want Him to woo me, to show me His goodness towards our family, to show His provision as He has undeniably done in the past.  I've been asking Him to show up like this since July and ya'll, He HAS. 

Since July, we've been gifted a washing machine, among other sweet and unexpected gifts.  Friends came together for the washing machine, which makes it mean even more to us, especially as some of these friends also walk a continual road of suffering.  What a beautiful thing!  Having a Lucy Belle (NKH, Cerebral Palsy, epilepsy, diapered, etc) as well as a typical one year old baby, a typical 15 year old boy, and a Henry (frontal-lobe damage, seizures, PANDAS, etc) - well, we have a lot of messes overnight and during the day, doing approximately 3-5 loads of laundry each day.  God GAVE us this gift and it moved my heart closer to His.  

This Gift sparked something within me and I began to realize God has NOT forgotten me.  He has not forgotten my children, my husband or my family, as a whole.  In fact, He very much cares about our needs.


Last week, we were able to take an unforeseen trip to Eureka Springs.  All four of our children were able to go and Mike's mom (Jayme McLaughlin) met us in Arkansas, along with her dog, Maggie Mae.  It was WONDERFUL to see Jayme and the kids adored spending time with her (let's face it - they also loved seeing the MiMi and PawPaw's dog, Maggie Mae).  Although we had no idea how taking Lucy would work,  it all turned out fine, even if we did continue to trash most sheets, blankets, towels, and clothes because of  continued c-diff (no hotel/motel belongings were destroyed/trashed).  We brought just enough disposable pads for the trip and didn't forget a thing, which is a big deal for us.

I had no idea God would provide all of this - the time, finances and details for this trip, including a rental SUV so we could safely carry all children and all equipment.   In fact, I was so sad we had not been able to get away for the summer.  In fact, the boys had only been swimming one time because of the constant illness and more. This Trip is also something GOD has done, something HE allowed and orchestrated.  Once again, my heart is moved closer to Him, closer to the Truth and further from the lies my heart has been tied to for most of my forty years on earth. He swept in and swept us away, giving respite, providing joy and laughter we so desperately needed.  He very much cares about our needs AND our desires.  


The Future
I wish I could tell you that now, after everything God has done for me and for our family this Summer, I am gleefully trusting Him; but that isn't where my heart, mind and body are at this time.  I'm still asking God to step in - to sweep in and move things around inside of me and inside my Family.  I'm still choosing Him - I'm choosing to believe He loves me and wants good for me and for each my children.  I'm asking God to continue to help my unbelief, to continue to deepen my desire for Him.  I'm asking Him to do new things within me and within my family, which I haven't been able to do in a very long time.  

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SO, there you have it - My heart and Spiritual State as it has been, in many ways, for the last several months.  Thank you for allowing me to share it.  Thank you to those who've had the patience to read through this particular blog.  Even more so, thank you to those who have obediently given and reached out to us, to me, even when it was not deserved or warrented.  It is YOU who have shown us God's Heart;  it's YOU who have shown us Father, Son and Holy Spirit.

I could not be more grateful for your ability and willingness to be used by Him on our behalf . . .

Ryan

- Jeremiah 29:11-14 (ESV), "For I know the plans I have for you, declares the Lord, plans for welfare[a] and not for evil, to give you a future and a hope. 12 Then you will call upon me and come and pray to me, and I will hear you. 13 You will seek me and find me, when you seek me with all your heart. 14 I will be found by you, declares the Lord, and I will restore your fortunes and gather you from all the nations and all the places where I have driven you, declares the Lord, and I will bring you back to the place from which I sent you into exile".

-Romans 8:28(NLT), "And we know that God causes everything to work together[a] for the good of those who love God and are called according to his purpose for them".

- Jeremiah 9:24(TLB), "Let them boast in this alone: That they truly know me, and understand that I am the Lord of justice and of righteousness whose love is steadfast; and that I love to be this way".

- Lamentations 3:24-25(ESV), “The Lord is my portion,” says my soul, “therefore I will hope in him.” The Lord is good to those who wait for him,  to the soul who seeks him.

-2 Corinthians 5:7 (TLB), "We know these things are true by believing, not by seeing".

Sometimes, It Goes Downhill So Quickly (Lucy Update and More) . . .

Psalm 34:18 (ESV)

The Lord is near to the brokenhearted
    and saves the crushed in spirit.

There's much to update, especially since I haven't blogged in a while and haven't been very consistent in updating these last many months.  This has been quite intentional, as the Lord made it blatantly clear that my family needed my attention more than ever, which has recently proven itself to be true many times over.  I won't lie - today has been incredibly difficult for us all, and while I've felt a pull to post recently, I know after today's events, it is important for me to do so tonight (err - this morning).

 Please bear with me as I try to briefly but sufficiently cover several things, including Lucy's declining health, Henry's IVIG update, DC trip info and more . . . 

Lucy Belle:  Our Girl turns SIX next month, and it's so hard to believe that much time has passed since we were preparing for her arrival and even MORE hard to believe that it's been so long since Ellie left for Heaven.  I vividly remember thinking then, "if Lucy follows Ellie Kate, I at LEAST have SIX, FULL more YEARS of life with her and I will drink in every moment!".  I know that sounds twisted for some, but it is an honest picture of my mind at that moment.  Lucy has been a life-line for me in Ellie Kate's earthly death and she has saved me as I long to be a good mommy to her and to the boys, especially through all of the seasons we face.  

One of our Favorite Summer pics of LuLu - 

feminine and sweet, with her hair growing so long!

Our Sweet LuLu yesterday, snuggling with Mommy

Miss Lu Lu (aka, 'Lullie') has taken a turn for the worse, although she is stable at home tonight.  As many of you know, Lucy went on hospice a few months ago and while we knew she was declining, the main reason for choosing hospice was for palliative care, meaning we could better address Lucy's immediate issues (most definitely including her intense pain) while receiving the attention and other various benefits hospice provides.  It was at that time a few months ago, several of Lucy's doctors at OU told us they thought she was following "her sister's life-pattern" and because of that, they encouraged us to leave the regular Sooner Pediatric Clinic and thus, we are now seen outpatient at The Children's Center.  This was a HUGE decision for us, but we have not doubted it one bit (other than missing our favorite nurses and folks in the SP Clinic).  

Our new pediatrician specializes in medically-complex children and cares for many of our Hope Link friends, and he is on the Board for our current hospice service.  We've been SO blessed by Russell Murray Hospice and never could have prepare nor guessed that this same hospice, these same precious nurses, would soon be caring for FIVE of our Hope Link friends at the same time - walking with two of our dear families as their babes recently left this earth.  

In recent months, weeks and even days, we've noticed Lucy's seizure activity increasing, which we had addressed accordingly.  Right now though, her neurological state and seizure activity is changing SO quickly that we can't really keep up with it.  All along, especially in this decline and in light of what we went through with Ellie Kate (or rather, what Ellie Kate endured in her pain and suffering), our main concern has been that Lucy NOT be drugged and "out of it", but that GREAT efforts be made so that she may be at peace, her body and mind at ease and without pain. 

This week, despite some rough recent days, Lucy started school.  She even made it an entire FULL day this week and YA'LL, that's HUGE!  We are SO incredibly proud of Lucy starting kindergarten and we are forever grateful for her teacher, Jana Neisent and the staff in her classroom, who could NOT be MORE precious, sincere, intentional, kind, and even prayerful.  Though Lucy was able to attend some school, she still has experienced great pain, the source really unknown, and she's needed pain medications to keep her calm and happy.

This morning after an unusually good night with Nurse Emma, Lucy rolled over and vomited and let out a strange cry - all unusual for her.  Emma yelled out for me and once I got to the room, Lucy was completely and absolutely unresponsive in every way.  NOTHING was waking her and we noticed her breathing was labored.  She started taking some deep, strange and struggled breaths so we immediately called hospice, who joined us shortly after.  Lucy's BP has been low, her heart rate extremely high, her temp normal, but shes's chilling and shaking then sweating (unlike her completely).  Even in doing vitals, she didn't wake or stir for many hours this morning, so Mike came home and MiMi (Mike's Mom) ran over to get Henry and Bowie (Conner was at school).  Lucy stirred a couple of times throughout the day but never has been back to herself, back to "baseline".  Tonight, when she has been awake, she's been screaming hysterically with no way to comfort her, and we aren't sure if it's pain or something neurological.  


We know this much about Lucy: 

• Lucy's issues today aren't bc of an overdose of pain meds or meds in general 
• Lucy's gut hasn't worked well for a while; absorption and processing has been slow AND
• We know the gut issues seem to be getting worse by the day. 
• We know Lucy is no longer having bowel movements, even with "help".   

Our Fears for Lucy:  By far, the gut issues are the MOST frightening, as Ellie Kate's life ended when her gut eventually completely shut down, and it looked much like this.  Holding her listless body today as she was taking those labored breaths, so reminded us of Ellie Kate and her last days. Unfortunately, it does look like NKH is progressing rapidly in Little Lucy but we should soon know if new meds may play some sort of part, esp because of her metabolic issues.  Our hearts hurt and although we've known from even before we ever held our blond-haired girl, this would one day happen, it doesn't make the sting any less harsh or the thoughts any gut-wrenching.  

The Future for Lucy:  We don't know what will happen with Lucy; she could wake up tomorrow completely back to her normal, and if that's the case, we will dance up and down the streets in praise to God (I will even take video)!  But if she doesn't bounce back quickly, or if she doesn't bounce back at all, we will continue to huddle in as a family and drink in every moment.  

Our Current Feelings on Lucy's state:  Sincerely, we feel grateful in that we get a SECOND chance to walk the road of child-loss, and what I mean by that is, we already well-know what we WISH we would or could have done towards the end with Ellie Kate, but we GET the chance to do it better and accomplish all of those wishes and regrets as Lucy's NKH progresses.  Truly, Friends - we see this as a comfort and gift from God and once again, Ellie Kate's life has made Lucy's sweeter, easier, less-complicated and SO much more!  
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Adoption Finalization . . . On the last Monday in June, we officially and legally welcome our youngest into the family before the State of Oklahoma.  Bowen Jane is now a McLaughlin and we cheerfully have added, "Bowie Mac" to her list of nick-names.  We are BEYOND grateful for this unplanned, life-changing GIFT from God (which is one meaning for her name) and although the timing has been mysterious at times, we see Bowie as SUCH a healing balm to us ALL.  Watching the boys, Lucy and even both sets of grandparents enjoy such a joyful, happy, delightfully growing baby girl within our home brings us endless laughter, even during uncertain times. God's timing is ALWAYS best, even when (and especially when) we don't understand or expect it. 

Bowie Jane Mac and MiMi awaiting the finalization

It's Official!  Professional photos coming soon.

I couldn't hug him tight enough that morning, waiting for the judge to call us in.  

My heart is SO grateful for our New Baby Girl!  

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Henry's IVIG . . .The Saturday after Bowen's finalization, we flew to D.C., much to the courtesy of the Isaiah Stone Foundation here in OKC.  There was NO way we could have financially made the trip, even with Mike's excellent, steady job and paycheck (which we are beyond grateful for).  Our family spends over 20% income on healthcare each year, so a trip like this would have been difficult, especially after trying to settle and pay adoption fees.  GOD provided a way for both boys, Mike AND myself to go and we even toured the Capital a bit before and around Henry's appointments for his PANDAS.  What a GIFT!  

It's "Darryl" from The Office!  

Conner was thrilled - 

 my boys love them some Craig Robinson!  

Did you know that Albert Einstien never learned how to tie his shoes?  That's a familiar thing to Henry, so he made a cool connection!  

Henry's legs were hurting too badly to walk the museums 

(PANDAS can do this, much like Lyme Disease), 

so we used the wheelchair while "adventuring" together. 

The Air and Space Museum was a HUGE hit! 

      Tour Buses were our friend!

Sweet Boy, Taking it all in

We met with Dr. Latimer, one of the three PANS/PANDAS specialists in the U.S. (her words), and we were blown-away.  Dr. Latimer confirmed everything we felt and thought about Henry as parents and supported all of the test and blood results taken over this almost four-year adventure.  She collected ALL of Henry's info and studied each part, getting to really know him and US.  Dr. Latimer told us more about WHY Henry acts the way he does - ex: she noted Henry's chorea movements (which we barely notice), and some tics which also had not jumped out to us much.  She also physically pointed out Henry's reflexes aren't working in the normal way (he is hyper-tonic).  She read through the EEG's, as she's also a renowned Neurologist, and was able to give us insight there.  Dr. Latimer also told us more about those with PANDAS, who only get approx 3hrs of REM sleep every 24 hrs, so they are always tired in every possible way.  This gives way to extra crankiness and confusion, which can trigger the already heightened "fight or flight" response.  It's a recipe for disaster without sleep but there is no cure for that part of it, or for any of it, at this time.  

After visiting with us for several hours, Dr. Latimer suggested IVIG treatment, which is what we expected and hoped she would do.  Our doctors here in OKC have recommended it but it's rarely done here for PANDAS - that isn't the case out of state and it's an especially normal thing to do in that part of the country.  We hoped she would invite us back for the treatment sometime very soon, but to our SURPRISE, Dr. Latimer suggested we come in immediately for IVIG treatment.  Mike and I already knew this was what Henry needed.  It's the last-effort treatment, the best and most-effective treatment, for severe versions of this disorder.  It's not the quick or easy decision you hope it to be, as the cost is due in full upfront and in the clinic, was $12,500 without ANY assurance it would be covered immediately (or soon) by insurance (in hospitals it runs anywhere from 40-60K). Mike and I spoke in closed doors before leaving the doctor that day, and although we KNEW Henry needed this, there was NO way we could pay (We are still paying off some of Ellie's bills and of course the all-expensive law school (seriously ya'll, think about it before you go- tongue in cheek)).  

That night, we walked around D.C, staying out late (I admit to being somewhat down, wondering when and how God would provide, why He had given us this opportunity to just send us home, and more).  We literally, physically ran into Paul Ryan (surrounded by secret service but at least we got a smile and nod!) - of course I couldn't say a word except his name (why couldn't I have given him some friendly, special-needs momma advice the night before the big healthcare vote:)?).  Before bed, we received a text from some very dear and generous friends whom Mike had randomly filled-in about the treatment for Henry.  Ya'll, these friends offered to PAY FOR HENRY'S TREATMENT IN FREAKING FULL, with no pressure on us to pay them back in a certain amount of time, which means we can work hard with insurance and fight for coverage if needed (although we haven't yet heard from insurance).  WHAT?! WHO DOES THIS type of thing?!  I CRIED in JOY, thanksgiving and relief, amazed at God's provision yet again for our family.  He ALWAYS provides what we NEED!  I excitedly called the doctor early the next morning and made plans for the IVIG treatment to take place over the next two days, just in time for us to leave straight from the office to catch our flight home (yay for Uber!).   

Happy Henry during IVIG

Pals receiving treatment the same day!

Henry took it all on like a champ.  We didn't know what to expect, but there was another little guy receiving his second day of treatment our first day (it's a 5/6 hr treatment over two days), which provided Henry a true playmate for the entire day of treatment - we couldn't have planned it better.  It also provided solace and peace for us as parents, as we could connect and share stories and in sharing, there is HOPE.  We saw NO signs illness or reaction to the IVIG (reactions can look like that of chemo), although they loaded us with the proper meds and made sure Henry received plenty of fluids for the flight home.  It wasn't until we got back that Henry suffered set-backs and vomited with severe headaches, for over a day or so.  We know it could have been so much worse and are sincerely just grateful we could even have the chance to do it!  

The ultimate test will be in four months, about six months out from the treatment, when we should see the height of the IVIG success.  Folks have asked, but until recently, we had not seen many changes in Henry.  Now though, he is doing SO much better - making better decisions and increasingly choosing to do what he needs to each day, many times even on his OWN. It's still a daily struggle and I continue to believe this journey is much harder than dealing with feeding tubes, pumps, suction machines, seizures, and wheelchairs. We hope the benefits will be even MORE clear this coming week as Henry starts at Epic Charter schools, with a special-education teacher and principal.  OUR God has provided this trip AND this treatment so clearly, so neatly, to timely, I have NO doubt that He's actively at work on behalf of Our Son!

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Oh, Friends - thank you for staying with me throughout this long update.  I'm sure you get tired of my words and the length of the blog, but you will never know how much your endurance and friendship means to us.  

While we do face struggles 

in other areas at this time, 

our current prayer requests are listed below.  

Thank you in advance for championing 

and interceding on our behalf!  

• Please pray for my Little Sister Rachael, who gets married later this morning (it's Sept 1st now!).  Ellie Kate died on Rach's bday and although Bowie was born on that same, precious and ordained day, it's still bittersweet for her.  While we do not believe Lucy will go to Heaven this weekend, I hate the thought that tragedy once again mars my Baby Sister's life and on one of her biggest days yet - her wedding day.  Prayers for peace, understanding, hope, and JOY are much appreciated!  
• Please pray for provision for the IVIG medical bills so that we can reimburse our friends, who so willingly GAVE that Henry could RECEIVE (they love him dearly).  Please pray too for those insurance issues to settle easily, quickly and peacefully, all in a Divine Way. 

• Please pray for Lucy's complete comfort and healing.  We pray she would be healed here on earth, but we want what is best for HER, always and forever, no matter what that may look like.  

• Please pray for all of those involved in Lucy's care - hospice, home health, doctors, specialists, and more; that God would open eyes and hearts and that He would guide every decision on Lucy's behalf, especially during this time of uncertainty.

• Please pray for us as Lucy's parents - that the Lord would UNITE me and Mike together, binding us tightly, and that He would draw us to Himself as well as to each other.  Please pray healing for us in ways God understands and we ask that He too will give us the Divine wisdom and direction we need to make every move.

• Please pray for Henry as his IVIG still "sinks in", so to speak.  Pray for HEALING here on earth for Henry - body, soul, spirit, and mind and that God would be preparing Henry for school starting next week.  Pray that things would fall into place with school, despite what's happening at home, and that Henry will once again be able to thrive and gain confidence in that.

• Please pray for Conner as he's started the BIG 8th grade - and we all know how difficult and scary that age can be. Please pray for Conner's heart to be engulfed by the Spirit and that the Lord would capture him even now and amidst the hardship surrounding our family.  He so often gets understandably angry and frustrated with it all and yet he carries it in ways I can't begin to understand or imagine.  We only have about four more years with Conner at home and we want those to be HAPPY, HEALING years. 

• Please pray for our families - our parents, in particular, as they struggle and hurt when their children AND grandchildren hurt.  Pray for strength, provision and availability for them to be with us as we need them and as they want to be.  

• As always, please pray for great peace and comfort as we face unknown days ahead - like so many of those dear to us are walking through now.  

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We BLESS you tonight, and as a united family, 

thank you and pray God's peace be upon you and your family and that He alone would meet your needs in the above ways as well.  

Psalm 34:1-4

I will extol the Lord at all times;    his praise will always be on my lips.
² I will glory in the Lord;
    let the afflicted hear and rejoice.
³ Glorify the Lord with me;
    let us exalt his name together.

⁴ I sought the Lord, and he answered me;
    he delivered me from all my fears.

Ryan Elizabeth