It Changes On A Dime

Over the weekend I received a beautiful gift in the mail.  It's a darling necklace with the reference James 1:17 on it.  Opening it took my breath away - that this sweet woman of God would take the time and energy to not only send me a darling gift, but to also encourage me spiritually with it . . . it just made me feel so loved!  I looked up the verse and again, I was humbled.  

James 1:12English Standard Version (ESV)

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.  

James 1:12

Does she see this in me? Oh, Friends - I feel incredibly inadequate and I do NOT feel "steadfast" 99.9% of the time.  My heart was lifted as I knew I would need this reminder, literally around my neck, in years to come.  I just didn't know I would need the reminder so quickly. 

Life has been smooth lately.  We've enjoyed seeing Lucy's abilities grow by leaps and bounds this summer.  We've had fun as a family and have pressed in to each other, feeling such sweetness from the Father.  Henry's had a great summer too, and although he struggles each day with behavioral issues, he has come so far and has conquered many things!  Other than a bad IC flare I've recently been thrown into, life has been peaceful and I've had to pinch myself in that because our life as a family has NEVER been this "peaceful".  Today, that all changed, as our world was rocked . . . 


We've had some issues finding a doctor to spear-head Henry's healthcare.  We had changed pediatricians right before his PANDAS diagnosis - one reason is that our favorite pediatrician of all time no longer works in the clinic at OU.  After working hard to find a "team leader" for his care, we decided on our psychologist, and that has been going okay.  I still haven't been convinced that was the best thing to do, but we've been weary from seeking out options and fighting for our son's health on other levels.  Today, we went back to Sooner Peds Clinic, and although we aren't with that favorite doctor, we are with his staff, whom we adore and have a long and faithful history with.  I trust them immensely with each and every one of our children, and they've watched all of them grow and change since around 2006!  


Henry didn't take his morning meds today, which completely threw him off.  I trusted him when he initially told me that he took them.  I made the mistake of not checking to see if he actually took did.  We've come to realize that the medications are SO important and when Henry doesn't take them, there is a BIG difference in behavior, and it isn't good at all.  So, no meds were on board when we made it to the clinic today and automatically, we were at a disadvantage.  


It's been a while since we've been to that particular clinic, so I had to catch everyone up on Henry's health history.  Can you imagine - giving ALL of the information, sharing ALL of the situations and details collectively from two years ago until now?!?  That alone can wear a momma out, ya'll.  Henry became unruly and was bouncing off the walls shortly into the appointment, touching everything and literally trying to climb the walls.  He was jumping off of every object, all because he hadn't taken his medication, and as Henry's mom, that is absolutely MY fault.  


Adding to the stress - Miss Lucy had the blowout of all blowouts, and I'm not talking about her blow-dried hair.   She pooped at the clinic, and it was on the floor, all over her dress, and completely covering the seat of her wheelchair.  She had poop on her hands and even on her face!  It was so bad that I needed help from two nurses, and we actually had to BATHE Lucy there in the clinical room, right there in that metal sink.  It was hilarious and she actually enjoyed her bath and the attention that came along with it, I might add. OH, LUCY BELLE!!


The final point at the doctor today:  there are many mysteries with Henry right now, and she is concerned - rightfully so!  We are concerned too, and I cannot tell you what a relief it is to FINALLY have someone step in and step up, wanting to be our "Team Leader" and gatekeeper where Henry is concerned.  We are taking a very proactive stance and will start rounds of testing tomorrow morning as I take Henry in for bloodwork.  There will be sleep studies and MRI's, and likely visits with other specialists there at OU.  We are also being referred to an out-of-state doctor who specializes in Infectious Diseases.  This highly-esteemed doctor is at the University of Missiouri's Women's and Children's Hospital in Columbia, MO.  Not only is this doctor an infectious disease specialist, but also, he is a PANDAS expert!  We are incredibly encouraged at the possibility of Henry being seen by such an incredible doctor who can hopefully offer us some assistance as well as information, as we WANT to know what's going on in Henry's body and mind.  It's maddening not to know what is going on in that beautiful mind of his, just as it is with Lucy and Ellie Kate.  


Henry took tylenol for a headache this morning and by the time we left the doctor, his head was hurting so bad that he was crying.  I have very little doubt that Henry had a migraine, as I have them, Conner has them, and my Mother has them (they are hereditary).  Shortly after he expressed his head pain, he started crying about his legs hurting, and then his arms and feet, then his hands.  Henry is a strong boy with a high pain-tolerance, so when he is wincing and crying out in pain, I take notice.  We got home and put motrin on board, which seemed to make a difference.  Although my mind was swimming with what we had just talked about at the clinic - seizures, infectious disease doctors, getting a script for Henry's pull-ups (he has trouble with this still), thinking about how to convince him to have blood drawn - I had to put that all aside and get the kids off to "Back-to-School Night"!  

Henry became very overwhelmed at the school and after meeting his teacher, he left the building on his own, and I had no idea where he went or how he escaped.  I was called to the office when the poor principal told me that teachers had seen him exit out of a certain door.  I can only imagine what is going on in that poor woman's head, as she was the same principal who had to chase/follow/track down Henry to our home when he ran away from school several times last year.  I quickly found Henry who was hysterically scared and a little disoriented.  He said he "couldn't see well", which is what he said before he fell with his last seizure.  I had him sit down, but he threw himself around on the ground, crying out in pain.  His eyes looked funny, so I picked him up, found Conner and got to the car.  I thought that if I got Henry home, I could better asses him and get him to rest a bit.  I did get him home and tried to cool him off, while he was still crying and now complaining about a tooth.  He had mentioned the tooth several times over the weekend, but it has a cap on it, so I didn't think much of it.  


Tonight, Henry has thrown up and he is extremely pale.  He doesn't have a fever, but that is typical for him when he falls ill.  Before falling asleep, he was still limping around in pain, crying out the entire time and also complaining about his tooth.  I have made an appointment for the dentist, but they can't see him until tomorrow afternoon.  I'm thinking that Henry may have an abcessed tooth under that cap!  That would explain the symptoms and the behavior, which breaks my heart (infection can send one into a flare).  I have NO IDEA how I will get him to the dentist.  I have NO IDEA how I will get him to sit in the chair.  I have NO IDEA how I will get him to let Dr. B look (and touch, and x-ray) his hurting tooth.  And now that he is vomiting, will checking his tooth cause him to throw-up?  He's already on TWO antibiotics because of his PANDAS treatment, so you would think that any infection would be taken care of, unless indeed he does have a major immune disorder going on that we don't yet know about.  DEEP SIGH.


I just don't know, ya'll.  I just don't know.  I don't know what to think and I don't know how to take on another major unknown issue.  Although PANDAS, and all that's lead up to it, has indeed been an unknown road for us, at least we had some answers and treatments.  Now, I don't know what the future holds, and in many ways, we are exactly where we've been with Ellie Kate, in particular . . . just not knowing, but watching our child hurt and suffer.  


One of the hardest things tonight was that Henry was truly scared about school.  He was once again begging me to home school him.  As you may know, Henry had an extremely hard time at school last year and basically was home with me from February until the end of school.  I tried to home school, but with Henry's intense defiance (which we have believed is caused by PANDAS) prevented us from getting anywhere and we weren't able to do any type of work at all.  Henry's repeating first grade because of this very thing (not because of his intelligence), but what if he runs away from school again, even this week?  What if he refuses to go and also refuses to let me teach him?  He truly has changed so much and has learned to better control himself and even make better decisions, but I don't know if he has the self-control to really and truly focus on school.  What do I do with that as a parent?  It's hard to wrap my head around.  


Please don't get me wrong - I'm not running around like a chicken with my head cut-off, screaming and letting my thoughts run wild with the "what if's".  I know better than to do that.  I've learned the hard way, and doing that isn't good for anybody.  I also know, without a doubt, that God WILL cause this all to work for Henry's good, for MY good and for the good of each member of our family.  I know that Christ will be glorified in it.  HOWEVER, that doesn't mean that my heart doesn't hurt or that it isn't heavy; it doesn't mean that my eyes aren't stinging from the tears I've shed today, or that I haven't cried out to the Lord to just take it all away.  Maybe He will and maybe He won't.  I'm having to CHOOSE to trust Him, as He has proven Himself worthy and good.  


Please pray for wisdom for the doctors and for me and Mike, as we try to navigate Henry's health care and medical future.  Also, pray that we are able to get the tests done quickly and that we will quickly receive the results.  We also need the Lord to provide for any trips we will be taking for Henry's medical treatments, and that He would provide for those same treatments and any medications that may come along with them. 

Friends, we desperately need wisdom about Henry's schooling.  Pray that God would give us black-and-white, crystal-clear answers that can only come from Him.  Pray that they would be evident and that He would move in our hearts immediately concerning this.  School starts Wednesday and it makes me queasy to think of all that we have up in the air!  Oh, Father!  We NEED YOU! 

Thank you for standing by us in the good and thank you for standing by us now, in the difficult and hazy times of this journey.  May the Lord richly bless you for staying with us so faithfully because that action spurs us on, encourages us, and breathes life into our hearts more times than I could ever say.  We love all of you dearly and look forward to watch God's story unfold in all of this.  

Lord, I don't know how to do this, but I know that YOU know what's going on with Henry.  I know that you are FOR Henry and that you are FOR me.  You fight for us, you forgive us, you give us good things.  You are a GOOD FATHER.  Show yourself as a good father to us, God.  Thank you that Conner and Lucy are doing so well right now, and let that continue.  Secure them in you and capture their hearts, guiding their every movement.  Capture Henry's heart and tame it, Father.  Capture his thoughts - the thoughts that aren't of you.  HEAL HENRY, God!  Release this burden of sickness that hangs over my son - this heavy bag that he has to carry with him, everywhere he goes.  Give Henry relief.  Go before us in appointments and my your presence be thick.  May your angels line those rooms and may Henry feel the peace and comfort that comes from their presence, all because of YOU.  And Jesus, I selfishly ask you to lift my spirits.  Thank you so much for giving me that gorgeous necklace and thank you too for it's perfect timing.  Holy Spirit, you work in the hearts of your Believers to accomplish your will!  Thank you for remembering me and thank you for showing me your goodness.  Bless my sweet friend richly for listening to your Holy Spirit and for acting when you told her to!  Would you continue to lift my spirits?  You know the current desire of my heart and all that goes along with it.  Would you somehow make a way?  

We lay it all at your feet.  

From the Brain and Tissue Bank

*WARNING: This post is a little graphic and may not be for the faint-of-heart.

NKH is very rare.  There are less than 500 people world-wide, living with it even now.  This week, our NKH Family lost two precious boys.  And while they are complete and whole now, the pain and suffering they endured on earth does not go unnoticed and the tragedy of their deaths has crippled their parents and everyone who loved them here on earth.  Sadly, this isn't new to us as NKH is considered "terminal".  I honestly cannot tell you how many children have died since we started our journey over nine years ago.  It's painful to think about.

With so few people around the world having NKH, and with it being considered "terminal", there isn't much research being done.  In fact, many doctors do not even know about it, and if they do, their information is sometimes terribly outdated.  One leading doctor here in the US, Dr. Johan Van Hove,  has dedicated his life to researching NKH.  He is the one we have seen in Denver and whom we have met with at all of the NKH Conferences in which we've attended.  We've seen so many families affected; so many children pass away . . . it causes a fire to burn and an urge to fight, if not for a cure, at the very least for better treatment for our children.  As NKH parents, we want them to be able to live better lives, lives that are not filled with chronic pain, seizures, GI issues, cerebral palsy, etc.  We want them to live lives that are filled with eating for pleasure, walking, playing with other children, and maybe even talking!  These things are a possibility because of research, but more of it needs to be done.

When Ellie Kate first went on hospice before she was one year of age, we decided to donate her brain to NKH research.  The leading NKH doctor had talked to us and we knew that NKH brains were needed.  They would help research in so many ways.  So when Ellie Kate went home on hospice in December 2012, we called Dr. Van Hove at Denver Children's Hospital and told him that we once again had decided to donate Ellie's brain and any other tissues that could be helpful in finding better treatment for this awful genetic disease.  This isn't a decision that everyone can make, and I fully understand that.  And I would never judge someone for choosing not to donate their loved ones organs, even if it is for NKH research.  It is an extremely private, intimate decision that only the closest family members can be allowed to make.  And we must respect the decisions that are made and support those who make them.

Today we received a letter from the University of Maryland's Brain and Tissue Bank, the place where Ellie Kate's brain was sent.  I knew what it was before I opened it.  It was the pathology report; the final report on Our Daughter; over two years later.  I let the letter sit there for a while and I debated reading it on my own.  But, Lucy was asleep and the boys were entertained in our bedroom, so I had the living room quiet and all to myself.  I was at peace with opening it, and so I did. 

There isn't much that I gleaned from that report; not much that I could understand.  After all, it was a forensic pathology report and I am not a doctor.  I'm sure the report will be explained to us by our trusted doctors here at some point, and the report of course went to Dr. Van Hove for research.  But, on the last page of that letter, there was a picture.  A microscopic picture of portions of EK's little brain.  Two pictures, actually.  And when I saw them, I broke down.  I wasn't expecting pictures.  I didn't know what to think about that. 

All of a sudden, during my sobbing, my fingers touched those photos.  I did that with Ellie Kate's pictures a lot that first year after she died.  Touching a photo is like touching her, in a way.  And it was no different with these photos.  And that surprised me.  Before I knew it, I was thanking God.  I was thanking God that I had a NEW picture of Ellie Kate.  I know that sounds so strange, Friends and if you haven't lost a loved one, then I don't think you will understand that this reaction is "okay", but it is.  It's okay.  I am SO grateful, that even after My Daughter died, I was able to see a picture of a part of her - a part of her that grew inside of me.  How precious is that?  Twistedly precious?  Maybe so, but precious to me nonetheless.  I. Am. Grateful.  God knew, back when I signed the papers to donate, that a little over two years in the future, I would need to see a picture of Ellie Kate.  He's Sovereign and what happened today was NOT an accident, of that I am sure.  I want to be clear: I do not see this as a cruel act; that this letter had to come to us and that we had to see those pictures.  I'm thankful that I have a God, who is so tender-hearted, that He sent this to me on this day, for His purpose.  It is for my good.  For Mike's good.  It's a gift - that's how I choose to see it. 

I don't know how to end this post.  I truly hope it wasn't too upsetting for you to read.  I don't want that at all.  What I want from this blog is for all of you to see the good, bad and ugly of the life of a special-needs family; the life of a family dealing with child-loss, while striving to love Jesus with all of their hearts (and we so often fail, just like everyone else).  We do have a prayer request tonight - Lucy had a lot of seizures today and is still having diarrhea (going on three weeks now although nothing has grown in cultures - yay!).  Would you pray that she isn't getting sick?  And, Friends - love your babies.  Take lots of pictures.  Cherish the ones you love while they are here on earth with you. 

http://www.nkh-network.org/whatisnkh

Lifted and Loved

With the kick off of Ellie's Month of Reckless Love, my longings for Ellie Kate were getting pretty intense. One evening we had my parents over for dinner and I just broke down.  All of these hard days are coming up so quickly - faster than I want them to; faster than I'm prepared for them to come. 

I sobbed as my parents both held me.  It was really a special time.  Mike had the boys in the other room happily watching a cartoon, so for once in a long time, I was able to let the tears flow and I was able to share my feelings of loss with someone other than Mike.  Those feelings run deep, not just for EK, although that obviously is where my heart has been struck the most.  Over the past several months, baby Kylee, Ellie Kate's friends Makenna and Alyssa, and my friend Jenni all went to Heaven within days/weeks of each other.  My heart has been full with questions as to why God does what He does and why He does it when he does.  I know He is Sovereign, but when you are mourning, the Truth sometimes flies out the window.  That's why you have to grab it when you see it, and hold on to it with all that you have.  Our feelings change but Truth does not.  Jesus is Truth.

This same week I was contacted by an old and dear friend who, along with another friend, wanted to help our family in specific ways.  I was overjoyed at a renewed friendship more than anything, and I was truly encouraged in realizing that God had forgotten about us.  I mean, I know He hasn't forgotten about us, but sometimes it feels that way, and sometimes it feels like He forgets the little things we need or desire.
 
Within a matter of days we were blessed with Henry's first ever REAL bedroom furniture (and it is gorgeous, family heirloom pieces)!  The boys BOTH have their first REAL mattresses! Not only that, but the boys were able to order their very own bedding sets, which is a first for them.  You should have seen their faces as they scrolled through the choices online.  The medium Tumbleform feeding chair, which we needed for Lucy to safely sleep in at night while on continuous feeds, was mailed straight to our door; an extravagant gift that the Lord used His people to lavish upon us. 

My spirits and my heart have been lifted in knowing that I am NOT forgotten by my God.  He sees our needs and those special wants we have in our hearts.  He bestows them upon us just when we need them - physically, spiritually and emotionally.  Yes, My God is concerned with my emotional and spiritual well-being too! I'm so incredibly grateful that God used these two families to love on us this way. I mean, who gives family heirlooms and furniture sets??  Who orders special-needs equipment for another family (it's costly, ya'll!)?!!  THAT is some "Reckless Love". 

Speaking of reckless love - the first gifts from our "Ellie Kate Wish List" came in this week!!!  In the last two days, we've received seven packages full of wonderful things for http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdfthe patience at OU Children's.  It feels my heart with joy to think of handing out these gifts on Ellie Kate's birthday, December 4th.  Here's the list in case you want to check it out:
 In Honor of Ellie Kate McLaughlin - Amazon.com Wish List

Our Very First Packages for the Month of Reckless Love!!

I'm happy to say that my joy inspired me to put Ellie Kate's Christmas tree up this week too.  I was so excited about not being forgotten about by friends and by the Lord, and I was so excited to have a tangible reminder of My Girl up in our home, that I just couldn't wait any longer to get it up!  I unwrapped each packed ornament with care and I was struck with the sweet memories that flooded my heart with each and every one.  The tree is so special as it holds ornaments that Ellie made at school, a few she's made at her birthday parties (she IS a December baby, after-all), along with things that remind us of her - Tinker Bell, Hello Kitty, ballet dancers . . . there are even a few ornaments from special friends that were sent to us last year that now have important places on the tree.

 I hope these pictures bring you joy, Friends.  I hope you remember that the LORD remembers you and your needs, your wants, your desires, down to the very detail.  He gives us above and beyond and does so when we least expect it, always where He alone can get the glory.  And remember - our feelings will fail us but the Truth of God never will.  Go out and love recklessly today! 

Lucy is Three!

I've been bursting with joy, excited to post about our Sweet Girl this morning!  I'm just overjoyed that Lucy is OURS and that God has allowed her to live to the age of THREE! What an unspeakable blessing!

Although Lucy isn't officially our "rainbow baby", she comes very close to it.  She was only one when Ellie Kate died, and she has been a saving grace to me, to our family, in so many ways.  Lucy is the baby we didn't know we would have, but she is a blessing God knew we needed!

I remember longing for another baby, but we knew the risks - a one out of four chance with each of our pregnancies to have NKH.  Those aren't good odds, folks.  I spoke to my Dear Friend and faithful prayer partner Dana one evening, and shared with her our desires.  She committed to pray, and a few weeks later, we found out we were indeed pregnant.  How can you get pregnant on birth control?  I don't know, but Lucy is proof that it does happen! 

Early on I could feel this Sweet Baby move inside of me, just as with Ellie Kate.  10-12 weeks is early to feel a baby, but I promise that I felt those girls move that early.  I was thin with both of those pregnancies.  As soon as I felt Lucy move so early, I knew she had NKH.  I didn't want to believe it though, and we of course went ahead and did our CVS testing.

The first time I saw Lucy on that large screen in the genetic OB's office, I knew she was a mover and a shaker  She was this little sprite, all of twelve weeks gestation, moving and bouncing all around in my womb, just as Ellie Kate had done.  Mike and I had several names in our head for this girl (I knew it was a girl because of how sick I was from the beginning and I only get sick with my girls).  We saw this Baby Girl that day and knew she was a Lucy, right away.  "Bright Light" is what she was, bouncing around in there, happy and free.  And her middle name would be "Belle" after a dream God gave me of bringing beauty from ashes.  Oh, how much truth was layered in the name God had given Lucy Belle!

Lucy's birth was exciting!  I was terrified of early labor, and had contractions on and off for months.  I made many trips to Labor and Delivery.  I knew that all of our doctors, the geneticist, the NICU, etc all had to be on hand, and I didn't want to miss that window.  So at any sign of labor, I went to the hospital.  The morning of the 26th, I was tired.  I got the kids to school and went to my parents to take a nap.  I woke up frustrated and hurting, in the same labor pain that I had been in for weeks.  I stood there telling my parents that I refused to go to the hospital anymore until my water broke (which was silly, bc my water had never broken with any of my other babies).  I kid you not, folks - right then and there, my water broke!  In front of my parents, and we laughed and laughed. 

I ran to take a shower and get ready.  After all, I heard all of these stories of girls' water breaking and them having hours before delivery.  Once I got into the shower, it was clear that this baby was coming fast.  I barely got clean and we jumped into the car, Henry and mom in the back and my Dad driving us to OU Children's Hospital.  I was hurting and felt like I would have that baby right then!  This was not in our birth plan. 

We arrived and I got into a room and was already dilated to an "8".  It was less than an hour since my water had broken!  My dear, dear friend Holly Hall was able to come in and take pictures of our labor and delivery.  We had planned this because we didn't know what would happen with Lucy.  Would she stop breathing right away?  Would she cry?  Would we ventilate her?  We weren't sure about anything, but knew God would tell us during the moment.  So, we asked Holly to capture the moments that could be Lucy's first and last breaths.  I am so grateful for these treasured photos! 

A couple of pushes and a sweet cry, and this tiny blonde-haired girl was in my arms.  They let me hold her for a few moments before the team (and literally, there was an entire team in that room) took her to the NICU.  The boys were outside the door of the delivery room and they, along with grandparents, were able to see our girl be taken to the NICU in her incubator.  I stayed in that room, wondering what was happening.  It was such a strange feeling to have everyone gone and to be just me and the nurse. 

I see now that Lucy Belle McLaughlin IS our "rainbow baby", even though she wasn't born after Ellie's death.  She is a reminder that God is good, even through struggles.  The joy Lucy brings gives life and hope to my heart and to the hearts of our entire family.  I don't know what I would do without this precious, unexpected gift of "Beautiful Light". 

 

Oh Father, you are SO GOOD!  Your plans are ever-unfolding before us and they are too wonderful for our comprehension!  Thank you for the life of Lucy Belle.  Thank you for the love, joy and hope she brings to my heart as a mother.  Thank you for the light she brings to her Daddy and to her brothers.  Thank you for allowing me to love another special little girl - for entrusting me with such an incredibly special gift, design directly by you.  Your ways are not our ways, and I am so grateful.  Bless my daughter on this, her third birthday.  Be close to her heart.  Allow her to always she you physically around her, to see her angels physically protecting her.  Let Lucy know how much you love her, Jesus.  Let her grow and soar developmentally!  Let her know just how much she is loved.  Allow her to feel safe and secure.  Oh Father, I ask that you give Lucy a long and healthy, happy life here on earth.  Help us as her parents to give her what she needs and to teach her about your love for her, always pointing her to Christ.  Thank you for this precious, most Beautiful Light.