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

 

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

Happy Bowen Day!

Today was a Beautiful Day, in every sense of the word, and even though humidity was at 115%, we spent the day overjoyed as a family - a family now of SIX.  Tonight, we take deep breaths of peace, drinking in the hope and absolute JOY God has richly bestowed upon us through our most recent addition - this unexpected, but SO desired and wanted Gift who is now officially, Miss Bowen Jane McLaughlin!  Today was Bowie's adoption finalization and it has been declared before law and God, forever and always, that this Princess is OURS to cherish.  Truly, Mike and I are in awe at the undeserved gift God's given, allowing us to be her mommy and daddy!

Lucy wore one of Ellie Kate's hair bows (seen slightly here),

while Bowen wore a matching bow which belonged to Lucy Belle! 

Last year at this time, Bowen wasn't even a thought.  We had dreamed of adopting a typical baby girl, but we felt it was so far off, possibly even a dream that might never be fulfilled. How in the world would it work out, especially with OUR life? Though God had laid specific things upon our hearts such as open adoption and going through a private attorney, we had NO  idea how things worked and we certainly didn't know God was already planning this Most Precious Life which is Bowen Jane.  Below is some of Bowen's Story . . .

A year ago in December, just after Ellie Kate's birthday, God heavily laid adoption on my heart and I hesitantly shared it with Mike.  I knew life was heavy and we were still struggling with loss and even depression, so I knew it might sound crazy to bring this "a" word up to him however, it was so heavy on my heart, that I just had to share with Mike, and so I did.  I told him, all I knew was that the Holy Spirit was laying that word, "adoption" on my heart and I felt that someday, somehow, we were to adopt.  To my surprise, Mike quickly agreed with those thoughts and said that he too believed we would adopt someday, although his thoughts were that we would adopt several years down the road and I had no certain timeline in my mind or on my heart.  We decided to pray and focus specifically on this BIG, possibly life-changing topic for our family and God quickly answered and again laid the same things on each of our hearts, including guidelines, of sorts for what we would do and how we would do it.  Here are some examples . . .

• We truly felt God would bring a birth mom/bio mom TO us directly.  We knew we wouldn't have to put out an ad, spend time searching, etc. in finding this special woman who would carry our child. 
• We knew God didn't want us to go with an agency.  We have no ill-will or bad experiences with agencies and in fact, have several friends who have successfully adopted through agencies they love!  We just knew that wasn't how it would be for us.  We didn't have the finances to adopt in this way (agencies are more expensive), so it was a clear, automatic closed-door to us and we didn't think anything about not having an agency to lead.
• We knew we wanted a girl and we knew God would give one to us.  It could sound selfish and may be hard for many to understand, but since we've faced so much with our children's health,  and since Our Girls both were born with terminal diagnoses, we had a desire for a Baby Girl who was relatively healthy (our perfect desire was for an absolutely healthy baby).  If God so granted, we would love to experience all that comes along with a typical healthy baby girl, and we've longed for our boys to experience that as well!

What's sweet is that Mike and I had talked about adopting early in our marriage and it was something we were very serious about before we became pregnant with Sweet Conner.  Even then, around 15 years ago, God had already stirred us both for this adoption adventure. 

After hearing from the Lord and after praying and studying on adoption, we decided to go ahead and "randomly" post something on FB - I would just throw our desire out for the world to see in hopes that somehow, someway, people would spread the word and, at some point down the line, a birth mom would get in touch with us, be it months or years later (we were thinking more of the latter).  The conviction to post about the adoption that December was incredibly strong and even though I felt silly sharing that, especially during Ellie Kate's Month of Reckless Love.  After posting though, I felt a HUGH sense of relief and a remarkable sense of PEACE, which can only come from God. Truly, I am FOREVER grateful that I did because the word of our desire to adopt DID spread from there and without that post, we may not have been connected to our Bio Momma!

Toward the end of August 2016, I was contacted by one of Ellie Kate's former home health nurses who asked if we were still interested in adopting.  Of course, my answer was open and honest, "YES!", we were interested and longed for it, but it was such a hectic time with school starting, and Henry was hurting both physically and emotionally.  Mike and I weren't sure about the situation, but it sounded like the birth mom, an aquaintence of Ellie Kate's former home health nurse, was on the same page as we were on details.  Mike and I told both the Nurse and Birth Mom that we would wait to make any moves until we found out the sex of the baby, and to tell you the truth, we really thought it would be a boy and surely thought God would shut the door right then and there!  To our AMAZEMENT, we received the happy message that this baby was indeed a girl, and our eyes and hearts started to wonder in excitement!!

It's true - our family has a lot going on with a medically fragile child born with NKH, a terminal diagnosis.  We are also parents of child-loss, a mom and dad to a typical son as well as a younger son, who also has special needs in PANDAS and epilepsy.  To many, it seemed that we would be biting off more than we could chew.  We were weary of that too in the beginning and from the very moment we heard about this little New Life, we asked God to clearly open and close doors for us, even if that meant in tangible ways. 


Friends, we ONLY have wanted what HE has wanted for us and for our family because we well-know that life is just too short to waste apart from Him.  We've been through too much to think we could do it on our own.  So, after asking some close friends and a few  Church Elders to pray, and after seeking wisdom from our doctors (and the kids' doctors, counselors, etc), we had confidence that we were in fact, supposed to step out and seek this New Life; we WOULD move forward until He told us not to.  Mind you, we FULLY expected God to close and slam doors early on, BUT HE DIDN'T, and our hearts grew and opened as we became close with the Birth Mom. 

God's Promises have been evident and recently, He's

tangibly reminded us of His Faithfulness through many  gorgeous rainbows!

I had the absolute privilege of taking Birth Mom to doctor appointments weekly (medically necessary in her case).  It was a JOY getting to know this gorgeous woman I wouldn't have otherwise known, if it weren't for her willingness in allowing US to raise HER biological baby girl, as our own.  From the beginning, Birth Mom told us she felt as though she was simply a "vessel" for Bowen to come to us.  This Precious Woman truly loved her baby, and yet she believed that her baby was destined for US, for OUR family.  So, she carried Bowen in her womb, caring for the baby on our behalf.  It is unbelievably humbling and too precious, too tender to fully be explained in human language. 

When we found out  Baby Girl was to be born in January, we sensed even more confirmation from the Lord that this was something completely and utterly from HIM.  Was it true?  Was God allowing us to receive this Unspeakable, Unbelievable, Most Precious Gift of Life during the SAME time we would be celebrating Our Ellie Kate's birthday and Heaven-Day?  Truly, it felt too good to be true and I found myself crying before the Lord as I knew I wasn't worthy of such a gift.  In reality, I wasn't expecting God to heal our hearts in such a precious way, to bring restoration to our minds and spirits, although He does promise to do such things for those who surrender to Him.  Still tonight, I am in sheer awe and wonder at the thought of just HOW and WHEN God brought this all into place!  I'm so underserving and He is SO

able to do ABUNDANTLY MORE than anything we could imagine!  Truly, God has turned our Season of Mourning into a Season of Dancing.

God's plan was to place godly people along our way so that we WOULD be prepared; so that I in particular, would be prepared for the physical, mental and emotional things which could creep up along the journey.  I'm thankful for willing adoptive mommy-friends who literally have come to my house and answered questions, cried with me, served me with gifts, and most importantly, have prayed with us and for us (thank you, A, D, K and S!).  The Lord clearly and fully spoke through these women, and I will continue to glean from their wisdom and friendship from here on out.


On the morning of December 23, 2016 Birth Mom and I went in for her early doc appointment and were both SHOCKED that labor was here.  It looked like Bowen Jane could actually come on Ellie Kate's Heaven Day!  I had imagined that scenario before that moment, but wasn't truly sure how I would feel.  A Momma who has lost a child never wants to stop mourning for their Precious One and I wanted December 23rd to continue on as a "Holy" Day for us, where we recognized God's movement and nearness as we relived Ellie's life.  However, God clearly reminded me that He is a God of RESTORATION and THIS was a way He would restore my heart and the hearts of everyone in our family (extended family included).  He reminded me that this date was bigger than just me and my feelings - it was about my living children, my marriage, my parents and in-laws; and it was definitely about my Sister, Rachael who's birthday happens to be December 23rd as well.  God was restoring things for THEM and not just for me (imagine that!)! 

So, when the doc asked me if it was okay that we had a baby that day (he was aware of our situation), I could say with full PEACE, "Yes!" .  Yes! This is the day I wanted to see God move on our behalf and once again, everything about the life of a little girl was completely out of our control.  It was an honor and relief to sit back and watch God at work - with His perfect timing on detail, every medical personnel we came in contact with, even schedules and the fact that Mr. Henry was there for Bowie's arrival. 

It was (and IS) one of the greatest honors of my life, holing the hand of a beautiful, selfless woman who had chosen ME to raise her child.  I will never get over the gravity of that choice.  Bowen arrived late that evening and she literally was THE most beautiful newborn I had ever seen.  I didn't know what to expect - Bio Mom and I hadn't planned out exactly what would happen next, but as soon as that doctor pulled Bowen out and held her up, Bio Mom told ME, "Congratulations, Momma!" and I immediately hugged and kissed this brave woman who's entrusted me with so much of herself.  Oh, how humbled I was and will forever be by her words and actions that night!  They gave ME the gift of cutting the cord, then Bio Mom instructed the doctor place Baby Bow directly on MY chest, rather than hers.  Tears will forever flow freely at the mere thought of that moment.

The rest of the hospital story was truly a Dream as we were able to have a room there, just as if I had given birth.  On Sunday morning, we loaded the car and said goodbye to Bio Mom and her beautiful teenage daughter.  WHOA.  The gravity of it all was so strange to wrap our minds around, but we hugged and kissed and thanked each other and then we were off! Bowen Jane came home on Christmas Day. 

Since that time, Bowen has only brought LIGHT, LOVE, JOY, and PEACE as well as a HOPE that had been lost inside of me at the death of Ellie Kate, and in the time following.  Bowen is a HAPPY baby and loves everyone!  She lives up to her name and is petite and victorious, hitting all milestones far in advance (which is new to us).  She is Our, "Glorious Gift of God" and He has brought a tangible healing to the hearts of everyone - both boys, Lucy, me, Mike,
our parents . . . Bowen is the fulfillment of desires we almost were afraid to dream; she is a sign of Restoration to us as individuals and families.

Our lives have happily changed, becoming more busy than ever, but they are so rich and full and Mike and I stand in awe as we watch the Boys talk to Bowen or carry her around (with permission, of course).  They kiss her and help me and often say, "Mom!  I didn't know a baby could do that!", because to them a baby's abilities have been limited because of NKH.  Our dreams have expanded and although we want Bowen to be and do all that she wants to be and do, Mike and I can't help but dream about dance class and tee-ball, kindergarten and sleepovers; hobbies and passions we get to watch unfold before our eyes.  This Gift if not accepted lightly, of that you can be sure. 

Please don't be worried that we've somehow tried to replace Ellie Kate with Bowen Jane.  If you read through the story again, you will see how we instigated none of this, and that's another way we know it is absolutely from the Lord.  HE worked it out in every detail, knowing the dates and times, as He is the Creator of every living thing; the One who puts planets into motion!  It is impossible to  fathom the thought of trying to somehow "replace" a child and that has never been, nor ever will be, our intent in adopting our Sweet Girl. 

Ellie Kate and Lucy Belle are unique, wonderful Gifts from God - the MOST perfect gifts, better than I could have hoped for, because they've taught me the depths of Christ's love for me and the intimacy of the Holy Spirit.  Because of Ellie and Lucy, God has given me desires and opportunities I never thought I would have.  The Lord has sweetly refreshed my heart and opened me up to a deeper, fuller love for those around me - in my family, my community, and beyond.  It's all because of the work HE has done, all because He chose to do so in and through MY Precious Girls.  And you know what? Bowen Jane's life will have an equally important impact on my life and because of her, God has already tendered my heart toward so many things I didn't even know existed!

December 23rd will always be Ellie Kate's Heaven Day - the day she met Jesus face to face; her last breath here in our arms, was her first breath of eternal, perfected life in Heaven!  God has chosen December 23rd as the Day Ellie Kate would meet Him again face to face, and we continue to trust  His infinite wisdom, causing ALL things to work together for our good (EK's good as well!), and for His glory.  Ellie Kate will always be my first-born daughter, the One I hoped and dreamed about since childhood, with her most perfect lips, perfect green eyes, full eye-brows, long eye-lashes, gorgeous skin which glistened in the sun, and those perfect little curls that would bounce as she did, all around the house.  I will always have a deep longing in my heart for My Ellie-Girl as I continue to try and smell her sweet scent on everyone of her items still treasured in our home, as strain to remember and hear her deep giggle.  I will forever yearn for the day when I will run to her upon reaching Heaven and scoop her up in my arms, never to be parted again.

December 23rd will always be the day Bowen Jane McLaughlin took her first breaths here on earth.  It will forever be a day of promises fulfilled by our Covenant-God, who promised to restore all that had been lost, including our hope, joy, light, and laughter which have already been reknewed.

We will continue to celebrate life and death and yes, we will celebrate it on the same day.  I don't know how, but we will and we'll continue to honor Ellie Kate's life and legacy of Reckless Love - the unconditional, compassionate love we learned by loving her and living with her during her short seven years on earth. 

No, Bowen Jane won't be compared to her Big Sisters, but she will know them from the stories will tell and the pictures we share. 

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UPDATES . . .
Lucy's still struggling with severe pain and although we now have heavy meds on board, she still screams out, many times for hours on end.  When she's not screaming, she's often sleeping, her body worn-out by the thrashing and crying out she's done so much of each day and night.  We long to see Our Lucy, who smiles and laughs and loves to be tickled; the Girl who loves music and her brothers, even her new baby (she loves to give Bowie kisses and even allows her in her be sometimes).  We long to see Lucy healed here on earth, with us but we also want what's best for her and admittedly, we don't always have that knowledge. 

• Please pray for pain to ease in LuLu, for doctors to have wisdom as they treat her and wisdom as they learn to care for her. 
• Pray for her home health nurses, that they would have strength and that they wouldn't grow too weary of the screams and the scratches and bites which often come with it. 
• Please pray for the Tully's as they care for Lucy while we are with Henry at his next big appointment, that there will be clarity in every direction given, peace in every moment (for Lucy and parents), for protection from all illness and harm, especially while we are away.

Our Van tapped out last week and is STILL in the shop (a full week later - ya'll, that isn't good!).  We hope to have it out soon but are also praying for a vehicle which can fully air and cool those in the back seats, including (and especially) Lucy and Henry who tend to seize in heat. The need for air is actually HIGH out-ranking the need for handicap-accessibility, which we could actually now do without. Go figure.  Would you believe it??!!!  Dear Friends loaned us their new van (non-handicap accessible) and it works Perfectly!  It has changed our minds as far as what future vehicle we desire, especially with all of the air conditioning capabilities!  We would love for your prayers alongside ours, that these special friends who've offered such a gift, would be richly blessed for doing so and that God would sweep in near to them as they too walk the roads of medical fragility and special needs. 

Henry's appointment with the PANDAS/Neuro Specialist is MONDAY, and we are so excited  to be gifted this medical trip!  Even Mike, Conner and I are ALL able to go, which will be so fun and we are truly blown-away at God's goodness in giving us this special time with the boys.  Somehow, someway, we are able to spend special time with just the boys, each and every summer and I know it's something they will remember and treasure always. 

• Please pray for clarity for the doctors and wisdom ahead of time. 
• Pray too for peace for Henry during the entire trip. 
• Our hope is that we receive life-changing direction during this visit with the Specialist, direction which will allow Henry to feel comfortable among his peers and have the ability to function among society as he grows. 
• We are SO desperate for God to move during this trip! 

Conner is our Brave Bubba, who lovingly dotes on Bowen almost non-stop.  He's grown a couple of inches this summer already which makes for sleepy days and sore muscles (growing pains).  I cannot believe how grown-up he is with his deep voice, long legs and hairy armpits:)! 

• We are GRATEFUL for Conner and ask that you would pray for any and all depression and defeat to be lifted from him
• Please pray with us, that the Lord would run in and capture Conner's heart in ways he cannot even fathom at this time. 
• We want to see God move in Conner, causing a spark that can only come from God! 

Thank you for joyously celebrating the addition of Bowen Jane to our family!  Thank you too for continuing to pray for us,  encourage us, support us, and love us as you are led.  YOU make a difference in our lives and in the lives of those around you and we are eternally grateful!