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