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

Outer Turmoil and Inner Peace

Outer Turmoil.  Likely, you feel it now too, whether it's within your family, or with the terror, madness and immense loss which has surrounded us as a Country.  It's impossible for us to escape  it - be it the death around us as a result of racial hatred or the death of a personal dream.  Precious friends of ours are mourning the deaths of their husbands, mourning deadly blows to their marriages, marking the anniversaries of children lost to disease and sickness . . . so.much.heartache and turmoil inside, outside and everywhere in-between.  

Turmoil (as defined by Merriam Webster):

 "a state or condition of extreme confusion, agitation, or commotion".  

Inner Peace.  I feel it - the Holy Spirit bringing complete peace to my own heart as I continually run to him during these uncertain times.  Peace is also in the hearts of my friends going through unthinkable heartaches.  It may come and go, but it is there because God promises it for us as Believers. Everything, and I mean everything, seems to be shaken-up and uncertain yet, somehow His peace is there, often times waiting in the silence.  

Peace (as defined by Merriam Webster):

• a state of tranquility or quiet; freedom from civil disturbance; a state of security or order within a community provided for by law or custom

• freedom from disquieting or oppressive thoughts or emotions

• harmony in personal relations

• a state or period of mutual concord between governments; a pact or agreement to end hostilities between those who have been at war or in a state of enmity

• used interjectionally to ask for silence or calm as a greeting or farewell

Here's the thing - Merriam Webster can't define the peace that comes from God.  It's a peace that doesn't make sense who those who don't know Jesus as their Savior.  We can still be concerned with every.single.thing around us - every threat to our family physically, mentally, emotionally, and spiritually, and yet we can have a "peace that passes all understanding".  I KNOW that God can, is and WILL use ALL things to work together for MY good and for HIS glory, and the same is true for all of those who know Christ.  The world may fall around us, but we have a faithful God who is on our side, fighting for us.  There is PEACE in knowing those things, and you can have that peace too! 

Jesus tells us that we WILL have trouble in this world.  This world does NOT offer peace to us, or rather the peace that it DOES offer is quite fleeting.  

John 16:33(ESV), "I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

John 14:27 (NLT), "I am leaving you with a gift--peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid".

Philippians 4:7 (MSG), "Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life."

Since Ellie Kate's death in December 2012, our family has faced many trials and much turmoil.  I don't like to think back on it too much, because it truly can be overwhelming.  My Grandmother passed away tragically and unexpectedly.  Both of Mike's grandmothers have died.  My Aunt  unexpectedly passed away and other loved ones have had serious accidents and hospital stays.  Three of our family dogs have died.  We've dealt with unexplainable heartache with Henry and have had his diagnosis of both PANDAS AND epilepsy.  We've added counseling, extra therapy and other doctor appointments to our already busy schedule.  

I've held babies who've just taken their last breath and held the hands of some dear friends as they kiss their babies for the final time, watching the funeral home coming to take away the earthly body of their precious children.  I've attended around 15 funerals since Ellie Kate's - of my own friends and of friends whose babies and even husbands, have left this world.  Mike and I had the unspeakable honor of having our lives intertwined with several of those who lost children in the 2013 Tornado here in Moore, OK. I received my Interstitial Cystitis diagnosis, and it has rocked our world as a family - more doctors, more surgeries, more pain, more therapies.  Mike had his accident where he hurt his ankle so badly in December that he is still recovering - more surgeries, more therapies, more doctors.  

More recently, we've watched my Mother on life support not once but TWICE, due to medical neglect, not knowing if she would wake and come back to be the momma that we know.  I've held her hand as she's navigated her new "normal", where her body and mind won't allow her to do what they once did.  

SO many ups and many downs, My Friends.  So  many losses - too  many to mention, really.  BUT, GOD.  GOD HAS BEEN FAITHFUL AND TRUE.  He has been faithful in our earthly losses.  He has been faithful in the diagnoses.  He has been faithful in the hospitalizations.  He has continued to provide, above and beyond our most basic needs.  

GOD NEVER CHANGES.  Everything, EVERYTHING around us in this world changes, but not Our Savior.  Because of Jesus, our sweet times outweigh the heartache - truly, that is ONLY because of Jesus.  

We are not the only family to face heartache and hardships; we are not the only ones who taste the effects of death, of sickness, of loss, of depression, of silence.  Everyone faces these things, and maybe YOU are facing these things now.  The only hope; OUR only hope . . . YOUR only hope . . . is Jesus Christ.  He is the lover of all Souls - red, yellow, black, and white.  He fights for ALL of us because He died for every.living.soul.  None is better than the other; all are equally precious in His sight.  

If you are facing heartache today, know that Jesus loves you.  It's not just a phrase to make you feel better.  It's the truth.  He made you.  He loves you.  He fights for you.  We must love each other and fight for each other just as He did, My Friends.  Knowing His love is the ONLY way to know peace.  

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Personal Peek . . . Very recently, we were able to head down to San Antonio to spend time with my brother and his family before they move overseas.  My beautiful sister-in-law is an Infectious Disease doctor in the military and is being stationed in Germany, while my brother has just been accepted into Oxford University (yes, my brother AND my sister are both working on their P.H.D's - I'm the slacker here).  We had a very sweet time full of rest, love and laughter. It was an incredible gift to be able to spend time together before their big move, and I'm so grateful we were able to make the trip as an entire family! I hope you enjoy some of the photos of our time away together . . . 

Lucy LOVES the pool and we someday hope to

 have one at our house so she can exercise and play daily!  

God planned it out so my Auntie Cheryl met us in Waco on the way down, 

on her 60th birthday!  What a fun treat!  

Teagan, Lucy and Liam

Precious girls with Matching Hair

Lucy LOVED Morgan's Wonderland, the special-needs amusement park in San Antonio.  It was amazing!!  Look at that smerk! 

Lucy, Lovin' Life

Our almost-teenager loved it too!

We celebrated Henry's 8th birthday as a family down in San Antonio!

Look at these smiles on the Ferris Wheel!  

Everything was handicap-accessible for Lucy - it was a dream!  

Meet, "Ruby" (our new, baby cocker spaniel).  

She loves Lucy and decided to ride on her lap most of the trip.  

Tully Cousin Time!

Magnolia Market

Precious shot of my Mom and her little Sis in Waco!

Prayers for Henry

Friends, we covet your immediate prayers for our Sweet Henry.  Henry is in a PANDAS flare and has had a terrible "episode today", which lasted from around 10am-5pm.  Henry finally fell asleep and has stayed in deep sleep since that time, and we couldn't be more grateful. 

 "Thank you" to everyone who has been praying specifically for Henry this afternoon - you have know idea how much it encourages MY heart as Henry's momma.  When I was holding Henry as he was biting and kicking me, I got a glance of the responses to my FB post about it, and my heart was instantly lifted.  God has surrounded us with such an amazingly loyal group of friends, family and even strangers who so faithfully stand by our side.  The Lord knows we couldn't do this without such a great support team, and that includes all of you.  


Please continue to pray for Henry.  Things got pretty serious today, VERY serious in fact.  My Dad was over helping and Mike had to come home from work.  It was intense, scary, maddening, frightening, discouraging, and caused us all to run straight to The Throne to surrender it all, including our Precious Boy (the Lord keeps putting the image of Abraham and Isaac in my head).  We don't know what's going on inside of Henry's body or mind, but God sure does.  It isn't just something people say, folks - it's absolutely true.  God knows every single cell in Henry's body.  He knows what is functioning and what isn't.  He knows the quirks and mis-fires, and we are asking Him to show us where they are as well.  


Ways to pray: 

1.  For ease of Pain for Henry - his brain swells in a PANDAS flare and he has severe headaches.  His body is on sensory overload as well, meaning that every little touch is multiplied by a thousand.  What feels like a brush of the arm to you or me can feel like someone trying to BREAK his arm.  I know it may sound out-there, but I assure you, this is the state in which Henry has been today.  

2.  Pray for PEACE - specifically, peace over Henry's little brain.  He is so intelligent, so smart, excelling in every subject at school - but in a flare, he cannot think straight and his thoughts are mis-firing all over the place.  His mind has no peace and neither does his body.  He cannot stop moving and that isn't an exaggeration.  Henry will become enraged and start throwing things, breaking things, etc all bc his mind is crying out for PEACE.  

Please pray for PEACE over our home as well.  Peace is my favorite word and theme for this time of year, Ellie's Month.  I long for peace to take over during this difficult month, and I'm longing for it even more now!  I want the peace to be so heavy that we FEEL it when we walk in the door.  

3.  Pray for protection - Henry has been involved in some dangerous things today.  He could have been very hurt in a multitude of ways, but thankfully he wasn't.  We want that protection to continue over Henry.  That angels would surround his every coming and going from our home and that he would be protected from every car, from every person, from every object that could cause harm.  

4.  Pray for wisdom and guidance - we are DESPERATE for guidance, ya'll.  I mean, truly desperate.  We don't have one doctor to spear-head Henry's PANDAS at this time, but that isn't because of lack of effort on our part.  We need to know what to do and we need to trust the person telling us what to do.  Of course the Holy Spirit will lead us, but we need medical professionals who are as concerned about H as we are!  We have been incredibly dissapointed and even let-down by his current psychologist, which of course hasn't help this situation in the slightest.  Should we try IVIG treatment?  We need a doctor to approve that and we would need Henry to be admitted asap.  Should we "wait it out"?  Do we immediately take him to a specialist out of state, and if so, how will God provide for that??  

Please pray for Henry's other caretakers, including his teachers at school.  Would you pray that God would put the right words in their mouths, for just the right times, just for H?  Would you pray that He would lead their actions to be those that would ONLY benefit Henry?  Would you pray for endurance and hope for each of them as well?  

5.  Pray for Conner and Lucy - Conner already has expressed that we must give a lot of attention to his brother and little sister, and for the very first time, he's starting to feel left out and left behind.  Please pray against these feelings in Conner.  Pray for confidence in himself and confidence in us as his parents.  Pray that Conner will feel well-adjusted and extremely loved; safe and sound, wanted.  We do our very best to show him this, but lately H and L truly HAVE demanded all of our attention.  Lord, please lift burdens off of Conner's heart and mind!!  


Thank you for praying.  As always, you will never know how much it means to us - at least this side of heaven.  Thank you for standing beside us and with us, especially through the roller coaster loop of PANDAS and all it entails.  


Choosing Hope because of Christ -
Ryan
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For more information on "In Honor of Ellie Kate - A Month of Reckless Love", please visit the following blog post:  http://www.thewonderfullymadelife.blogspot.com/2015/12/a-month-of-reckless-love-its-only-just.html

FOR WAYS TO GIVE while receiving a tax write-off (simply click on the links in blue): 

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and ALL donations go directly to Lucy Belle and Henry's medical costs.

*Give to OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

Hostipital

When Conner was little, he used to call this place the "Hostipital".  He was two years old when we all were thrown into hospital life, and that was over nine years ago.  Nine years of survival mode, with a few breaks in between.  This has become our life, and our ministry, our family's mission.  It's also become the life of our children.  For example, Henry wanted his third bday party to be here in the hospital cafeteria, and so we made that happen for him!  Conner and Henry find peace here because it is familiar, and because people know them here.  They also absolutely LOVE the cafeteria and getting to choose what they have to eat.  


PEACE.  I'm grateful that the boys feel at peace, at home here.  This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so.  For those who don't know, Ellie Kate spent most of her life here at OU Children's.  She had long stays and shorts stays.  Ellie Kate absolutely loved it here because everyone here made her feel loved!  She wasn't scared to come here, and neither are the boys.  


Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy.  It's easier because we are OUTPATIENT, and I know we are just there to visit.  We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times.  Thankfully, she hasn't been in-patient in over a year!  That is a miracle to us, because it never happened that way with Sweet Ellie.  The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way.  I'm just fighting the overwhelming feelings and anxiety.


Lucy is in the hospital because she is having trouble with her feeds.  She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth.  Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy.  Most of Ellie Kate's stays here were because she couldn't handle her feedings.  Either she couldn't keep them down or they hurt her too bad for us to give.  So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!).  Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube.  That means she gets a little bit of it constantly through her belly.  Last night they were able to bump the rate up a bit and she responded really well!  We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.  


Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense.  Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like.  Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms.  They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit.  Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal.  We ALL felt it.


PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe).  Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc.  Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well.  I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth.  Bottom line:  Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc.  There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death.  Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.  

All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages.  I just haven't been able to do it, Ya'll.  Lucy's been screaming so much and up until now, has required complete attention in every way.  We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way.  I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way.  I'm grateful that they trust us, and we are blessed to have a great team!  I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach!  WE NEED the outreach and encouragement!  I personally thrive off of that in times like these, sort of like a team.  When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand.  THANK YOU for CONTINUING to do that with us and for us!  It means more than you could ever know.  


Right now, I'm in the waiting room while Henry is back for his sedated MRI.  We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned.  I have enough - I'm not meant to carry that as well.  God's got it worked out for Henry's good and for God's glory.  We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.  


Would you pray for PEACE?  We need God's supernatural peace, the peace that HE has promised, to flood us.  I mean, I want to feel it SO incredibly thick that fear seems an eternity away!  Also, please pray for Lucy's gut to start working again.  My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment.  It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders.  Please pray too for PAIN RELIEF for Lu Lu.  

Other ways to pray: 

• for clear and quick results for Henry's tests and for wisdom for the doctors where he is concerned.  
• Pray too for Conner because although he doesn't express it, I know all of these things must weigh heavy on his heart, even if he doesn't realize it.  
• For me and Mike - that God would protect our hearts and guide and capture our thoughts; that He would continue to heal us and comfort us even though it seems impossible to do that here:).  
• for our parents, as they hurt for us and hurt for our children
• for God's provision 
• for Mike as he continues (and desires) to work hard at his job (which he loves), and that God would allow him to concentrate on that when he needs to.  

Thank you for being there for us, Friends.  Thank you for loving and serving us.  Thank you for understanding, for staying alongside, even when we cannot respond or reach-out.  I will update as I am able.  

From the Hostipital - 

Ryan