Heartbreak

We are still here at OU Children's Hospital in the EEG Monitoring Unit.  Henry is sweetly sleeping next to me as I try to find the words to share with you my heart.  The truth is, I am exhausted and sleep-deprived and tired of being here in this tiny room.  I find it silly to complain as there are so many other people suffering around the world at this very moment - so many suffering worse things even here in this hospital, at this very moment.  We've spent months at a time in the hospital with Ellie Kate and yet I find myself stir-crazy and bored here with Henry, easily complaining about our confinement.  How quickly I forget how easy this is to endure, compared to all of the many other things in the world; compared to all the many other things we've walked through as a family!

We truly appreciate your prayers for Henry and that God would bring, that He would allow, seizures. We need them to come so that the doctors can see the possible triggers, so they can see where the seizures are located and so we all can be made aware of how those seizures affect Henry physically - heart rate, oxygen level, etc.  Although Henry hasn't had an official seizure since our arrival on Monday, the doctors ARE seeing results and are getting information that will help us properly treat Henry.  

The Therapy Dogs Came to Visit Henry! 

This morning, the neurologists rounded and filled me in on the latest readings of the EEG's. Henry's EEG continues to be abnormal.  Unfortunately (very unfortunately), Henry is having continual spikes on the left side of his brain.  This means he could have a bad seizure at any time.  It means he is prone to seizures.  It means he is having seizures.

You may remember that Henry recently had two abnormal MRI scans.  At first, it didn't seem that the abnormality was the cause of the seizures.  It is a common abnormality, from what I understand, and most of the time it goes undiagnosed.  As of now, the specialists are thinking that Henry's seizures ARE related to his abnormal MRI, but not to the part that we have seen on the test results.  They think that possibly, there are other abnormalities that we just haven't yet seen, or are unable to see, on the current MRI's.  

This news is heartbreaking to me, although not devastating.  I know that may sound strange and could be hard to understand.  As Henry's mom, I knew he was having seizure activity.  I'm the one who saw it and pointed it out to doctors.  I'm the one who pushed for testing.  I knew something was wrong.  I had come to terms with the abnormal MRI's, although Mike and I were truly upset with the news when we first found out about the abnormality.  I'm not sad that Henry will again be put on anti-seizure medication, because I expected that to happen after this study.  I just didn't expect seizure activity to constantly be happening in that sweet little brain that grew inside of me.

It's very hard to think that THREE out of our FOUR babies have had seizures.  As their mommy, I have to run away from thoughts of "what if?" or "did I do something to cause these things?".  There is nothing I could or couldn't do to change the Girls or even Henry.  My head knows that, and really my heart does too.  The sting is still there though and it's hard not to feel less-than as a woman and as mother.  Why can't I produce healthy children?  I know - the burden doesn't just fall on me, and no one in my family puts that on me.  It's just a normal thought-process for a Mother.

My Babies snuggling in a hospital bed - this has become a very familiar things for us!  One is always missing though.  We KNOW where Ellie is and she is more alive than ever!  

God now has us longing for healthy baby girl who we can adopt, in His perfect time. 

My heart IS broken for Henry because I don't know what life will look like for him in the future.  Will he get to play sports?  Will he suffer a catastrophic seizure that will debilitate him?  Will HE feel "less-than" as a boy, as a man?  What will this do to him emotionally - especially in the long run?

Mike has quickly reminded me tonight how wonderfully strong Henry is.  Henry is SO very bright, smart, quick-witted, and intelligent.  Henry reads incredibly well, especially for his age.  He is very strong in math and is reading AR books in the first grade (has been for some time now).  Henry is an excellent athlete and really excels in each and every sport he tries!  He is a "natural" at so many things but his true loves are baseball and soccer.  He is a GOOD boy who loves to give - he will give you his favorite toy, his best pair of shoes, his nicest set of clothes.  He gives GOOD GIFTS, and I love that God has placed that in his little heart.  It's one of my most favorite things about Henry!

Henry's actions remind me of what a good gift-giver God is and how He gave me such a marvelous gift in Henry!  God led us to have Henry.  God promised Henry to us, to me.  God told me he would be free of NKH, and He followed-through on His promise.  God breathed life into us again, in many sweet ways, when he allowed me to experience a typical pregnancy, birth, infancy, and toddler-hood with Henry.

The doctors want us to stay until at least Friday, in hopes of us still capturing some seizure activity.  They are also working with us on a plan for home, which would include new medications for Henry.  So, Bubbie and I will snuggle in again tonight (he likes me to sleep in the twin hospital bed with him) and will wait out the next two days, hoping that he will have a seizure.  If not, it's okay because we have a plan and information has shown up for the doctors to see and analyze.  The pressure is off, although we do still appreciate your prayers for seizures.


Several Friends have asked how they can help or what they can do for us.  Seriously, Mike and I are truly humbled - CONTINUOUSLY HUMBLED - over the kindness and generosity of those around us.  Strangers and friends alike, you love and serve us so well and have done so for a very long time.  There is no way we could still be on this journey without your faithful prayers and friendship; without your support, your encouragement, the many meals and snacks and Dr. Peppers you've provided over the years.  We are truly grateful.  Please know that we DO NOT take you for granted, Friends!!


Ways to Help: 

• Pray for seizures in Henry's brain
• Pray for endurance for Henry and for me as we are stuck in this lovely hospital room
• Pray for Conner who is really feeling forgotten and low right now - pray that he would be encouraged and that He would know that He is a treasure to us, to God and to others! 
• Pray for our families as they help with the kids, dogs, etc at home while we are away
• If you would like to help with a meal, you can sign up on the meal calendar by going to this link:
• People often ask about gift cards and, YES!  Those are wonderful.  We are not picky and we are truly grateful for anything the Lord leads you to give or for any way you feel led to love on us.  
• For help with medical expenses, tax-deductible donations can be made to Helping Hands (we turn in our bills and they pay towards them directly OR we turn in our medical receipts and they reimburse us with available funds - ALL gifts are ensured to go DIRECTLY towards medical expenses only):  

The Ellie Kate Memorial Project

Helping Hands Ministries, Inc.

P.O. Box 337

135 Main Street

Tallulah Falls, GA 30573

706-754-6884 (Office)

706-754-9247 (Fax)

www.hhmin.org 

melissa@hhmin.org

Seizures from Heaven

Awwwwwww . . . Seizures from Heaven (insert heavy, happy, sarcastic sigh).  This is what every parent dreams about, right?  Well, it may not be what EVERY parent dreams for their child, but Folks, it's what we are dreaming, hoping and praying tonight for Henry!  I know, I know, I know - it sounds absolutely NUTS.  You must be thinking, "Ryan has lost her mind!  I mean, she has REALLY lost her mind this time!".  Well, I think I "lost it" a long time ago, but in all sincerity, we really DO need to see some seizure activity in our Sweet Henry.  Let me further explain . . .

I'm writing tonight from the EEG Monitoring Unit at OU Children's Hospital here in Oklahoma City. Henry was admitted this morning and will stay here for the next several days, hooked up to a continuous EEG  monitor.  This is where the strange prayer comes in . . . we NEED Henry to have seizures while we are here. 

• We need these episodes to occur so that they are picked up on the EEG monitor.  
• When they are picked up on the EEG monitor, the doctors are able to analyze them and will be able to (hopefully) do the following:
• figure out where the seizures are coming from
• how often they are occurring
• what parts of the brain they are affecting
• and hopefully, what triggers some of the seizures in Henry's brain.  

It's a big deal for Henry to have a seizure while we are here and as any epileptic parent knows, it's only during these times that you do everything you can to ensure a seizure in your child.  Yes, it is very strange, even for us as parents! 

The Child Life Specialist came in and explained to Henry every little detail of the continuous EEG. She let him smell and touch each item, which was exactly what he needed as a sensory-sensitive kid!  I was so impressed (and super grateful!)!

Some of you may remember that Henry has a history with seizures and with seizure-like activity. We've seen this on and off since the fall of 2014 - around the same time Henry was diagnosed with PANDAS.  Henry had an EEG a year ago which unfortunately DID show seizure activity, so we know Henry has them. We were incredibly grateful that the EEG picked up the bad signals within that short period of time (the typical EEG runs around 45mins-1hr and it doesn't always 'catch' a seizure).  Since that time, Henry's been on anti-seizure medication.  We've also done MRI's on Henry's brain to help understand the seizures and to give us reasons FOR the seizure activity.

What's strange is that seizures are NOT part of PANDAS or PANS.  So basically, children with these disorders don't usually have seizures.  It's very rare for them to have such brain activity, so the seizures Henry is having are even more perplexing.

While Henry's MRI's have both come back "abnormal", the doctors do NOT think his seizures stem from that particular abnormality.  This is really confusing on several levels but instead of trying to explain it all and making you even MORE confused, I will just say this - the type of seizures Henry has aren't the type that usually present with his particular brain abnormality (insert heavy sigh from deep within my heart).

Child Life brought us a Hope Link Carebasket! At first, they didn't even know we were with Hope Link.  It was so fun to be on the receiving side of this!  

All hooked up! Henry keeps telling me that he, "looks so weird and gross".  

I told him he looks cool, like a Star Wars Character!  

Friends, you have been faithful to pray for us through thick and thin.  Many of you have been praying for us and with us since the beginning of this roller-coaster journey with  Ellie Kate, TEN YEARS AGO!  We humbly ask for your prayers again tonight.  Please know that we do not take this request lightly, as we know how busy your lives are and how burdened you already are with the heaviness of your own lives.  It is such a humbling honor to have you pray along with us and FOR us, Friends.  If the Lord leads, please join us in petitioning in the following ways: 

• Please join us in praying for Henry to have multiple seizure activity while he is here 
• Please pray that Henry wouldn't have any anger outbursts or any behavior that would prevent him from keeping his EEG leads on his head and body.  In order for us to catch activity, he must of course have everything on his head and in the right spots!  
• Please pray for CLEAR and DEFINITIVE results.  We are asking for pure, cut-and-dry answers so that the specialists will know exactly how to treat Henry.  
• Please pray for the time to go by quickly - for Henry not to get bored but for him to have a fun and exciting time here.  
• Please pray for energy, health and ease of pain for me as I stay here with Henry this week.
• Please pray for our parents (Henry's grandparents) as they help drive Conner and Lucy to and from school and practices and drive Mike to and from work (he still can't drive bc of his entire foot/ankle being in a giant cast).  Pray for energy, strength, patience, grace, provision, restful sleep, and protection for all four of them.
• Please pray for Lucy and for Conner as Henry and I are away this week and as big changes have hit our household once again. Pray that their daytime schedule can somewhat stay the same.  Pray for PEACE over their bodies and minds.

Oh, Friends!  How we covet your prayers!  I'm in "survival mode" thankfully, and my mind hasn't been wondering to the "what-if's" or "why us?", which I am incredibly grateful for!  I'm choosing to stay focused on the Father this Easter week, even though we are stuck here.  It doesn't feel heavy or burdensome, and I know that's because the Lord has made it feel light.  What a good gift!  

Also, our friends have set us up a meal calendar for the next few days and weeks.  Again, we do not take this lightly and we know some of you have literally been bringing groceries or meals for ten years now.  Only someone in love with Jesus could serve and love that well for that long! Thank you in advance for loving, serving, giving, and praying for us.  You will never know just how deeply your actions touch our hearts and how, with each act of love, just how sweetly you point us to Jesus.  

Link to the Meal Calendar: http://www.takethemameal.com/meals.php?t=XTTH9220

Praying for those Seizures from Heaven!!!

Ryan

Clear Tunnel

Life has truly felt like a tunnel the last few days.  I take that back - it feels like that tube at Chuck-E-Cheese - the one you go into when it's your birthday. You walk in and the door is closed and the wind is turned on.  It's a clear tunnel so everyone around you can see you looking crazy, wild and silly - your friends AND strangers! Your hair goes everywhere. They make you wear these goggles which make it hard to see.  You don't know where to look.  You are supposed to be grabbing that "money", but it's all swirling around you so fast that it's hard to even focus.  Yep, that's EXACTLY how it's been . . . 


We've been trying to settle back into routine, and the boys really seem to be thriving off of it.  Heck, I AM thriving off it!  I love having routine and meal times together, and we've been able to do that since we've been home from the hospital.  I have to say - we've been eating amazingly well because of the graciousness of precious friends!  All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).  

Lu Lu enjoyed a shopping with Mommy and Nunnie on Thursday!

Cheering Henry on at the Assembly 

Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!).  Thankfully, I pulled that tooth on out and he was acting and feeling better.  He is excelling in school, you guys!  He's even reading A.R. books now and received an award at school on Friday!  

Henry's Assembly 

Oh, Friday!  Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was.  After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet.  I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well).  Both Grandmothers were there, so they calmly followed my instructions.  We called 911 and had Lucy taken to OU.  She was out the entire ambulance ride.  

Still "out" during the EEG

Always a Daddy's Girl

They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us.  This never happens, ya'll - it was absolutely from the Lord.  The doctor immediately came in and was able to evaluate Lucy and order tests right then and there.  It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.  


They did bloodwork, an EEG and a CT scan.  All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow.  These episodes are absolutely neurologic and could be NKH progressing in Lucy's body.  This all could be happening too because she is still healing from ecoli that was in her port and her blood stream.  Mike and I really feel that it is a combination of both things.  


Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do.  Your choices are limited.  But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.  


Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat.  Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).  


Back to that tube/tunnel . . . 

I know that, in our case, the tunnel is clear because we invite others in to share our journey.  We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs.  We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.  

Living in a clear tunnel isn't for everyone, and I completely get that.  I also know that it may sound silly when I complain about it when I'm blogging here for all to see!  Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.  

Scripture, along with encouragement from others, has really helped me over these tough weeks. I will leave you with a verse that a Dear Friend recently reminded me of, and I think it's the perfect verse if you are like me and feel like you are in that tube/tunnel:

Isaiah 46:4

"I am He who will strengthen you; I will sustain you and I will rescue you".  

Hard To Love - Results, Heartaches and Dreams

First off, I want to say, "God Bless".  Seriously, God bless you RICHLY for reading this blog.  May He exceedingly bless you for following our family through these ups and downs, and twists and turns.  There are so many that I have a hard time following them all.  And some of you have been there from the very beginning of our roller-coaster ride - that's a whopping ten years, people.  GOD BLESS, and I mean that with the most sincerity.

There is always that family in your community, in your church or in your town . . . you know the one I'm talking about - the family with the non-stop calamities.  The family who seems to always be stuck in the middle of some sort of terrible muck; the ones always facing hardships, illnesses and loses.  The natural thing to do, when you know of a family like this, is to want to run far, far away.

You don't want to get involved because there is always drama.  You don't want to step in because you could become emotionally drained - heck, you could end up being drained emotionally, physically, mentally, and everything in between.  You think, someone will step in.  They know lots of people.  Lots of people know their story.  Or, you've helped for a while and think, "it's time for someone else to step in and care for these hurting people".  You are not evil to think this way.  It is a true, raw, human response to a train-wreck of heartache.

Oh my goodness friends, I did not want to be "THAT" family, but that is exactly what we are.  I know it and I am learning to accept it, because quite obviously, it is what He wants us to be - at least in this season.

I thought that season would be short and that once we figured things out with EK and got back on our feet, things would settle down and we wouldn't "need" so much from others.  Then, I realized that season would last a bit longer because Ellie was so sick for so long, and then Mike lost his job and we moved in with my Parents for a long time (that's when we moved to Moore).  Then God gave us our beautiful home (He gets all the glory for that and for everything in our home as well bc it is ALL from Him!), and the boys' school was just down the street and we were just a few blocks away from my parents, and we finally were in our own home again!  And then Sweet Lucy came along, and our lives drastically changed and became even richer than we ever thought possible.  We went through a very difficult time of Ellie being so sick, and Lucy also being in and out of the hospital.  The season felt so heavy and more difficult than any before.  Then Ellie passed away, and that has been the hardest season of all.  Now . . . well, now it is a different type of season, but it is still hard, exhausting and we still mourn Ellie Kate's death while also dealing with new and unexpected things.  

Last week, Henry had an EEG, as you may remember. Today, we received the results of that EEG, and they were not good.  The results are not what we expected.  The results could change a lot for Henry - even impacting his future.  Other test results for Henry came in today as well, and they too are confusing and complicated.  We are still trying to take it all in. The Lord is good and He has given us a great peace.

When I picture how I am feeling (I am a very visual person), I feel like I am standing inside of a giant tornado that is angry, swirling, with tons of big things flying through the air around me, spinning and spinning and spinning.  So much unkown, so much that I keep forgetting to do, so much that I want to do and need to do . . . and yet, I am standing still in the middle of it, with peace.  I'm not panicking.  I'm at peace.  But I am still overwhelmed.

Maybe God has made us "That Family" to humble me, to humble Mike - heck, maybe He will use it to humble our extended family too (the Lord knows that they didn't sign up to have us in their family).  I am a "Mercy" person, so I have no problems loving on families that may be labeled as difficult, but being here ourselves gives me more perspective and grace for those who always have things going wrong in their lives.  Maybe God just wants me to have a bigger heart for those hurting in different ways?  I don't know.  I don't know why you stick with us and why some of you have continued to give, love and serve us for these ten years.  

Good things have happened this week too!  God ALWAYS does good in the midst of the bad.  We have to remember that and sometimes even look for the good in it all.  We found out that Lucy will be at Wayland Bonds Elementary until she is junior high!  We get to stay in that wonderful, welcoming, warm school and we couldn't be happier.  That news shifted things for me and Mike and even more confirmed our thoughts of moving.  We were hoping to wait a little longer and save more.  However, we know now that Henry will be on an IEP next year (and likely through elementary), so he will officially be in the special education program as well.  Our DESIRE is to have Henry and Lucy both at Wayland Bonds where they can be at the same school, see the same therapists, and be in the same special ed programs (although they are VASTLY different bc Henry's disabilities are not intellectual disabilities).  Henry LOVES WB as he was in Pre-K there.  Every time we take Lucy to school, he tells me how safe he feels there, how much he loves it, and how he wants to go back.  I want to do that for him - for him to feel safe at school again.  

Tonight we saw the absolute house of our dreams; a house we could stay in forever.  And guess what?  If we were in that house, the kids would go to Wayland Bonds Elementary School!  This house is handicap-accessible, ya'll.  It was custom built for an officer here in Oklahoma City, who became paralyzed and then was tragically killed in an accident.

In this home . . .  Every single doorway is accessible.  Every bathroom is accessible.  The room that would be Lucy's is directly next to ours and it has it's own bathroom, big enough for Lucy's wheelchair.  She could have her own bathroom for her bath chair and her nurses could have privacy! Would you believe that the rooms has pink and white stripes on the walls and a chandelier as the main light fixture?!  It is already made for a Princess!   There is a ton of storage for equipment and formula and equipment (can you tell I am excited?!), along with a therapy hot tub INSIDE the house (not very extravagant, even though it sounds like it).  Lucy could get in, anytime of the day, anytime of the year, and move her muscles!  She could have therapy in the pool.  Henry is also having trouble with severe aches and pains in his legs due to the things he is going through.  We've been giving him hot baths daily, but how much better would a hot tub be - one that is specifically made for therapy?!

This dream is just a dream right now.  We are thrilled to know that something like this is out there - something accessible for people like us.  And it's brave for the family of this officer to sell the house, especially after suffering such a great loss.  God would literally have to move a mountain for us to move in and even MORE mountains to make it happen before school starts.  Our God owns the cattle on a thousand hills.  But I also know that He may not want this for us now, or ever, so I'm not getting my hopes up.  It's just an exciting way to end a very hard day full of not-so-fun news and I dare to say that it gives us hope, in a strange way.  Lord, we trust you with this.  We give you our home and everything that you've given to us.  We give you this dream house and the dreams of ours that come with it.  Guard our hearts.  Give us clear direction.  If it be your perfect will, if it would be the best thing for our entire family, please open doors and move mountains.  We trust you and we rest in the fact that you are all-knowing.  


I admit it - we ARE that family, Friends.  Part of me just wants to apologize to you over and over again for having to go through this with us, for having to know us and be witness to so many heavy things.  Yet, I cannot apologize for my life, my family, our struggles because God is Sovereign, and "there but for the grace of God go YOU (it could easily be you on this journey bc there certainly isn't anything special about us)". I know God wants me to continue to document our ride, our story.  I truly believe that we need to learn from each other - when we see, when we know, then we learn.  We've learned to love deeper, serve with purpose, give sacrificially, and so much more through our seasons, and our prayer is, that as you read our journey, God will teach you the very same things and even more!  

God Bless,
Ryan

FIRE

One thing after another, after another, after another . . . that is what this week was like.  I put out one fire and got a call to come put out the next.  This week though, I've been physically hurting - really hurting, to a great extent.  I had one of the worst migraines that I've had in two years and my IC is flaring again.  The pain is so frustrating because I cannot get the things done that I need to, that my family needs for me to get done.  And some things are falling through the cracks, and if you know me, you know that I HATE for that to happen.  Honestly, it CAN'T happen often with the life that we lead - there are too many details that are too important; life-dependent details.  

Here is a recent video about a study done on my disease - Interstitial Cystitis.  I'm not quite sure what I think about all of this information yet.  I guess I just really want to know more.  I can't base anything off of a two-minute video from a local news station.  I want facts, which shouldn't be too hard to find since the research is being done here at OU (how awesome is that?!).  At the very least, this video gives validation to my pain and to the pain of my IC Sisters out there:  

News 9 - IC


Also this week, I was diagnosed with another pain disorder.  Again, more fires (and with IC, I literally feel like I am on fire, ya'll).  I find myself so incredibly discouraged because I'm unable to truly care for myself right now - with Henry and Lucy needing non-stop, round'-the-clock care.  I also can't seem to find the right set of doctors to listen to me (I have some fabulous doctors, but the ones I need to help me the most aren't able to, aren't willing to, or don't know how much I need them to step in and step up). 

I have always been a strong advocate for our Girls and I feel like I'm a strong advocate for Henry (and for Conner when needed). That's the Momma Bear who protects her cubs and fights for what's best for them.  This week though, with the new diagnosis and the extreme pain that I am in, I just want to give up and give into the pain.  Meaning, I just want to stop fighting and stop advocating for myself and just curl up and live in pain instead of finding better treatment.  What would that look like?  IT would look like me cringing, waddling to and from places, being late more than I am even now, crying more often bc of pain, not being able to get ready/shower bc of pain . . . it would mean that I could ONLY care for the bare minimum in life . . . my children and their many needs.  I wouldn't have time or energy for anything else.  Most nights I am not even able to make dinner - I can only sit with a heatpad on my back and ice on other areas. That's where I am this week.  Maybe it's because I have been a health advocate for TEN freaking years, and I'm just TIRED of it.  Or maybe it's just hard to fight for myself.  Please pray that my heart will be encouraged.  I can't even ask for any other prayers right now because pain has taken over my ability to do most anything but just survive and be there for my family this week.

HENRY - I want to thank ALL of you who prayed for Henry last week.  He had an extremely rough week with his behavior, and we aren't sure why, of course.  Mike and I were just dreading Friday and the EEG.  It's sensory-overload for the average adult, much-less a child with sensory issues!  Ya'll, Henry was a CHAMP.  He did better than Mike and I could have hoped or dreamed, and we know much of that was due to your petitioning the Father on our behalf.  Thank you for praying for Henry to feel safe and calm.  We had the best EEG Tech that we've ever had (and believe me, we have had MANY over the years), and they even had stickers from Henry's favorite movie.  Sherman and Peabody stickers were actually all they had, can you believe it?  God was so good to care for each detail, and Henry truly did earn his hot-wheels toy that day!  

We do not have the EEG results, but we should get them next week.  Once we get them and once we are able to process them as Henry's parents, we will share with you what we feel led to.  We so want to be open in our journey, as we know the Lord has called us to this so that ALL of us can learn more about suffering and the lives of special needs families/the lives of people who have buried a child.  We also want to protect little Henry and his privacy too, so if we don't share much, it will be for a good reason and we appreciate your understanding.

Henry wasn't able to start school last week, but we were able to meet his home-bound teacher, and she is wonderful!!  Henry was extremely nervous and shy, so he hid while she was here in our home.  Please pray for confidence and that he will follow the rules.  He has so much work to catch up on.  It will be a challenge for me as well to add the additional schoolwork to our everyday routine (he will be doing everything that they are doing in the classroom and not just homework).  I'm not sure what this will look like or how it will turn out, but I do know that I REALLY need the Lord to step in as I am so weak.  


A few fun things and a dream . . . 

God provided us an opportunity to briefly share about NKH this past Friday evening on KOCO with Damon Lane. We were helping the Oklahoma Blood Institute promote one of their blood drives as well, and since both of the girls have received blood transfusions, we of course are huge advocates!  Mike is a super-duper-super-star-awesome-blossom donor and even has a special pin for donating so much (really, I kid-you-not).  I loved that the boys could watch us serving in this way and that they were able to see other people give blood too, knowing that it goes to people like Ellie Kate and Lucy (I tried to give, but as always, I was too anemic to do it).  Thank you, Tara Scott for letting us be a part of it all (as you can see, all three of the kids were eating it up!)!!

We've been dreaming of moving, as I've mentioned in other posts.  Henry begs us to, and honestly his behavior changes once he walks through the door of our home.  He has been greatly affected by the bad memories that this house holds, while the rest of us see both the good and the bad.  I do admit, when it's late at night; when it's quiet and everyone is asleep, it is desperately hard not to lay in my own bed, and picture Ellie Kate's last painful night here on earth, where she slept between me and Mike.  That's where she took her last breath that Sunday morning, December 23, 2012 - right here, in our home, in our room, in our bed.  We WANTED it that way because we WANTED Ellie Kate to be as comfortable as possible, and she was, right here in the place where she felt the safest.  Sometimes, however, this is overwhelming for me and it gets overwhelming for Mike and the boys too.

So, we've seen this amazing house that we would consider over-the-top for us (we are pretty simple, if you haven't figured it out yet), but it's in the perfect area with the perfect schools (still Moore schools), still close to my parents (for the extra help that they graciously give us), plenty of room for home health nurses, plenty of room for all of Lucy's medical equipment, plenty of room for all of her supplies (most of which are getting dusty in the garage), an actual office I can use for Hope Link, tile floors for Lucy to use her walker with, walking distance to the school for the boys and eventually for lucy (with me, of course).  Anyways, I joked on FB that we would need to win the lottery to be able to get that house.  But then I was reminded about how sweet dreams are.  Really and truly, aren't they sweet?  Big dreams and little dreams, all placed on our hearts - it's so fun to imagine and hope; it's a gift from the Lord, even if our dreams don't come true!  

My dreams aren't coming true right now, of that I am sure.  I do not dream of living in severe pain of every kind (physical and emotional), but I am not alone in my pain.  God is overseeing it and WILL use it for His glory and for my good.  I have an incredible husband who loves and serves the world so well (including his family).  And even in my pain, I can lay here and dream about happy things instead of dreaming of how I'm going to put out all of those fires . . . 

-- Ryan