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

All About Henry

This week has been a rough one, I'm not gonna lie.  If you follow us on Facebook, you know that this is true - our hearts have been hurting with more friends who are going through trials and heartaches (more about that in my next post).  My IC flare has intensified with a UTI that won't clear up, and Henry put us through quite the scare! But, this post is really all bout Our Henry Mac . . . 

I've been so concerned for Henry as he started first grade, his first time to go all-day to school.  With everything he has dealt with this summer, including diagnoses and introducing meds, my heart has been even more tender towards our Sweet Boy.

Henry lost his first tooth a week ago!

Henry's been complaining of a tummy ache and a sore neck for almost two weeks.  I had our nurses look at his throat and it wasn't even red.  He didn't have any other symptoms, and although I did believe him, I thought it was all due to going back to school - getting used to carrying his backpack, getting into a new routine, reading at a desk, etc.

The boys were out of school on Tuesday and he slept in until 9:30am.  We had a full weekend with friends and family activities, so I thought he was just tired.  He woke up and ate a few bites of breakfast and went back to bed until about 4pm.  I kept checking in on Henry and he didn't have a fever, but I knew something was up.  I thought he may be coming down with something, so of course I was looking up symptoms online.  When I finally got Henry to wake up, he was confused and wasn't making much sense.  He was extremely lethargic and said his entire body hurt.  He wouldn't even stand up for me, so I knew he was pretty sick.  It was so close to 5pm that I decided to wait a few minutes and take Henry to a pediatric urgent care right at 5pm.

This new pediatric urgent care close by us is run by some precious doctors from OU Childrens.  These are girls (um, doctors) whom we have seen grow up in the program and it is SO exciting to see them go out on their own like this!  Needless to say, we were thrilled when we walked in and saw one of our very favorites, Dr. P and of course she got Henry right in.  Dr. P had cared for Ellie Kate and Lucy.  She knew who we were, and I had no doubt that God went before us because I was a nervous wreck.

Henry couldn't stand up for his weight check and was very wobbly.  He still was extremely sleepy and out of it.  During some of his neuro checks his little eyes rolled back into his head.  I'm not going to lie, I screamed out to God internally at that moment, "Oh God, do NOT do this to another one of my children!".  It looked so seizure-like and I panicked.  His behavior was worrisome and Dr. P knew we needed to head to the OU ER. She called the attending there to let them know we were on our way and what to expect.  And off we went!

OU Children's ER is usually pretty busy.  We waited a while and finally got back, Henry still lethargic and asleep.  We had a new attending - one we had never met before, and it was NOT the same one that Dr. P had talked to before we arrived.  Shift change happened during our wait and thus we had an attending who didn't know us, didn't know our history with the girls (which has never happened in that ER), and who honestly didn't seem to want to be working that night.

Henry's bloodwork came back normal and so did his urine (which I had to ask to be done).  They did an ultrasound on his belly and found some intestinal issues that apparently are not uncommon, and the kind he has was supposedly supposed to correct itself.

Sparing the details, I packed Henry up and took him to the car while Mike wrapped things up in the ER.  Don't mess with a momma-bear who has any background whatsoever in special-needs or in working with doctors and nurses.  Our expectations are unapolagetically high, and we WILL hold you to a higher standard, a standard you pledged to when you became a doctor.  We left without many answers but SO many of you contacted us with texts, emails and messages.  We know you were praying for us; faithful are the prayers of the Saints!!!

Henry has continued to get better each day, although his neck still hurts a bit.  He had a clean bill of health from the doctor yesterday.  She thinks it could have been a bad virus, and I agree.  He definitely was scary-sick, but now he is better!  Henry in particular misses Ellie Kate so much, and this week he even dressed like her while he was home sick.  I'm not sure what to do with that or how to parent that.  His friends Jazzy and Rye brought him some balloons to cheer him up and he let two of those balloons "go to Ellie Kate" by letting them loose outside.  His little heart hurts.

Would you continue to pray for Henry's health?  Would you pray that the Lord would lead Mike and I as we seek wisdom in parenting Henry?  I'm also conflicted about Henry's schooling, although we do like his school and LOVE his teacher.  I just want to do what's best for him and his tender heart.

Daddy and Henry on our "Henry Date" last night

LUCY . . . 
So this update isn't ALL about Henry:).  Lucy is doing SO well and we were able to get her helmet this week thanks to some generous friends!  God ALWAYS provides, and we've been blown away by your thoughtfulness and willingness to bless us.  We have other things we are going to be able to soon order for Lucy and we have been able to pay some of her bills, which is WONDERFUL (I just cannot tell you what a good feeling it is to NOT get a phone call about a bill because it's been paid for!!).  So, thank you.  Thank you for giving and for supporting us through the "GoFundMe" page.  It's so humbling. With all of my heart, thank you.  

She loves it, I promise!  More pics to follow!