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

The Day The World Stood Still

We've had many days like this - days where the world seemed to stand still.  We've all been there, right?  There are times when we are hit with good news or bad news, or just unexpected news of any kind, and all of a sudden the world stops you in your tracks because everything you WERE counting on; everything you WERE planning, just ISN'T anymore.  A kink in the road, a change in the plan, a new diagnoses, a positive pregnancy test, a death in the family, a natural disaster . . . we are all hit with it at sometime or another.

Last Friday was a day like that for our family, although it didn't start out that way.  It started out as a normal day.  Doesn't it always?  But by the end of the day, Mike and I were both worried and confused where Henry is concerned - more than we have been in a long time.  The MRI from back in October - the one we had been told was "normal" was indeed, NOT normal, and that was the news we were met with on Friday.  I don't want to go into details because things are still up in the air, but that's what we DO know - that Henry's MRI isn't normal.  They don't think it's a brain tumor.  They have an idea of what it is, but will confirm with another MRI soon.  That news, along with additional news during our neurology visit, left me speechless . . . crying hot and heavy tears.  I had no words and struggled to check out and set up our next appointment.  The world was spinning for me, you guys.  What just happened?  Mike and I were on the same page with that thought, seriously - "what just happened?". We rallied that night and went to our sweet Friend's wedding, which was joyous, gorgeous and was JUST the spiritual uplifting we needed and I'm grateful for the way he allowed the night to end.


My heart and head are still trying to process things.  My body is taking a while to catch up and I have found myself exhausted mentally and physically today.  Michael is the Superhero, making it to work and even excelling there.  I truly don't know how he does it!


Mike's foot is infected again, at the site of the injury.  This isn't good at all, seeing that it's in the same spot as his osteomyolitis.  We also got the MRI results back and found out that he has all sorts of damage, including a bone spur, two torn ligaments, a partial tear of one tendon, bone bruises, and a ligament that has been split.  WHOA.  No wonder he has been hurting so badly!  Doesn't it sound just terrible?!  He's on a new antibiotic to clear up the infection and then will meet with the surgeon who is Dr. Langerman - the same doctor who operation on Conner's broken arm and the same doctor who first operated on my Dear Friend, Jenni Khufal.  Mike is in excellent hands.


We thought Lucy's ears were better, as we received an "all clear" last Thursday.  However, one of her ear drums has burst and she is once again pulling at them.  I'm wondering if they are still somehow infected and that she may need more than "just" the rocephin shots, meaning IV antibiotics.  I don't understand why her infections are so strong!  Bless her heart.  I can only imagine how miserable she must be, especially not being able to tell us what's going on.


I do have ONE FAVOR for you today - especially for those friends who have children with Special Needs of ANY kind.  My Dear Friend, Matt Chambers, is working on some exciting BIG things that could possibly be of great benefit to families like ours.  He's gathering research now for some lobbyists, so your participation in this survey is VERY much appreciated!  It won't take long, I promise.  Thank you in advance for doing it!
http://www.resourceable.org 



We love and appreciate you, especially during these times when we are so weary.  

Ryan

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.