This Week, This Week, This CRAZY Week . . .

It's only Monday, right?  Even so, it has already been a crazy week!  

Mike and I spent part of the day at the OU ER with Lu Lu. She has a royal, giant bump on her head and we are told to expect TWO black eyes from it:(. Lucy pulled a tray down onto herself (which she loves to do, but we try to not let her do); I wasn't in the room, thus the accident happened.

Lucy also has C-Diff, which she's contracted bc of the four different antibiotics we've tried/used to clear up her awful double ear infections. Now her bottom is on fire while almost constantly "leaking" and her little ears aren't cleared up at all (remember when I told the ENT I wanted to do rocephin shots in the VERY beginning but he didn't think it was necessary? This ALL could have been - maybe - avoided if he had just listened to this experienced mommy!).

On Friday, Lucy will have surgery to clear out everything that's going on in those sweet ears and they will hopefully put the fourth set of tubes in. Lucy will be admitted since she is "high risk", and that is just fine with us - we actually prefer it.

Also on Friday, Henry will have a minor oral surgery, but one that is VITAL to get his PANDAS under control. We can't put it off, thus it's the same day as Lucy's important little surgery.

Because of this, the online auction for Ellie Kate's Helping Hands Fund has been put off for a bit. We WILL be doing it as we DO have a lot more money to raise for NKH families!

THANK YOU to those who have given items to the auction for the Fund in Ellie Kate's name! Your items were a huge success in Boston, at the big NKH Fundraiser, and we are so grateful! And for EVERYONE - thank YOU for your love, prayer and endless support!

Seizure Monster

Oh, Seizure Monster, how we hate Thee!  Today started out so peacefully.  I had the morning to myself to get things done, and it was wonderful!  Our afternoon was set to be full of appointments- physical and occupational therapy for Lucy and a check-up for Conner (he needs one for school).
*PURPLE is being used in this post bc it is the color that represent Epilepsy

Shortly before loading Lucy into the van, I noticed that she had one of her "hard seizures", which are not gran-mal, or the type you think of with every body part shaking.  However, her hard seizures DO affect her entire body.  The seizure I saw was only a couple of seconds long, so I just decided to watch her.  Once in the car, Lucy started having them, almost non-stop.  These back-to-back seizures are called "clusters".  We picked Conner up and Lucy continued to seize, on and off.  Instead of going to therapy and instead of making Conner's appointment,  I decided we needed to go straight to the ER.

When we pulled up to OU, Lucy was still seizing until we got to the elevators.  Then . . .  she was FINE.  We call this, "back to baseline".  She acted totally herself, giggles and all!  I decided to take her quickly to the Neurology dept and have a nurse take an immediate look at her, rather than waiting in the ER, knowing that even at the best, she wouldn't be evaluated for several minutes and even then, they would need to get a history.  This was a split-decision and one that was hard to make.  God was so good though because once we got upstairs, as Lucy started seizing again, they took us right back into the clinic.  Our doctor came to see us, which is HUGE, seeing that she stepped out of clinic to do so..  The neurology clinic at OU is in high demand and it takes months to be seen in the clinic.  For our doctor to step away and come quickly to us . . . well, it's a sign of a great doctor! Lucy was evaluated, and her breathing and other sats were stable, so we were able to set up a plan and increased her meds. It looks like Miss Lu Lu has had quite the growth spurt and many has "just" outgrown her current doses.  That's our hope  - that this is all from her weight gain and that this increase isn't a sign of illness or progression of NKH. 


I was disheartened Lucy seized on our way home and has seized on and off all evening.  We've followed our doctor's directions and have recently given rescue meds.  If she continues to seize, we will need to go back to the hospital.  Please pray that seizures will STOP right this moment and that they will stay away for good!  

Air Conditioner - this seemed to little compared to Lucy's health, but it just added to the stress.  This summer, our air conditioner broke and we were able to fix it, but they had told us it was on it's last leg and the next time it failed, we would need a brand new one.  EEEEK!  When it was 78 degrees with the air trying to blow, my heart sank.  The thought came to mind to turn it off while I took Lucy to the ER.  It couldn't hurt, right?  When came back several hours later, I turned back on and headed to my Parent's house to rest in the cool air.  I went back to check on it an hour later and there was no change.  Dang it!  I prayed and I know many of you were praying too.  I left it on and went back.  When Mike stopped by the house after work, the house was cooling off!  And by the time we came back around 830, it was back to normal and is STILL RUNNING!!  I believe God touched our air conditioner and healed it, at least for the time being.  We are SO grateful for your petitions on behalf of something as little as our air conditioner!  God is SO good! We are still in amazement today!


UPDATE for TODAY, 8/24/16:

After the rescue meds were given last night, we saw NO sign of seizure activity. Lucy slept well but hasn't been to baseline, hasn't been back to herself, yet today.  She's had more seizures this morning, so we've called the Neurologist and we are waiting to hear what to do next.   Her body is likely exhausted from the trauma and from the increase in meds, but even with all of that, we wouldn't expect seizures to continue.

I so appreciate your love, prayers and encouragement.  Our Church, Bridgeway, jumped up and into action yesterday, already loving on us in word and deed.  Those texts, those emails, those calls, those visits . . . you don't know how much they mean.  We often feel isolated, even after all of these years.  Yes, WE feel alone and don't have as many close friends as you might think (although we have a great group of support and love).  So when people reach out in love and concern, it touches us and lifts our spirits more than I can fully explain.  

SEIZURE Explanation:  I know all of this can be so confusing and even scary, esp when you see seizures on TV where people are dying, or when a person is in a terrible situation, laying in the ER with perplexed doctors. I'd like to try to clear some things up, at least from a "Seizure Mom", so to speak.

No matter what, Seizures ARE scary and you DO want to stop them.  With NKH (and other neurological disorders and diseases), we must expect seizures because they come with the disorder.  Not ALL seizures call for a trip to the ER, and any "seizure-mommy" will tell you the same thing.  Sometimes the best thing to do is to stay at home and try to get through the seizures.  Moms/Dads/Guardians must use their best judgement and go with their gut when seizures occur.  It's important for us to be in tune with our child and also be informed as well as possible.

The time to call 911 or a time to go to the ER would be one of these things 

(although not limited to, and this is my opinion only).  

1. If a person, without a history of seizures, starts to seize/if you are with a stranger who starts to seize - call 911
2. If your child starts holding their breath and starts turning blue during seizure - call 911
3. If a child hurts themselves during a seizure (they may bleed or have a concussion) - call 911
4. If your child has a high fever and starts seizing - call 911 or take to the ER immediately
5. If the seizure lasts longer than 2-5 minutes, call 911
6. If clusters don't stop, especially for over 30 mins (after rescue meds), call 911 or take to the ER
7. If you are a care giver and don't know how to give rescue meds, call 911 or take to the ER (and contact parents)

Oh, Friends! THANK YOU for your continued prayers for today, and for Miss Lucy.  We also have a very important meeting for Henry late morning, so we are asking the Lord to balance all of that out, while protecting BOTH children in the process.  Our lives are definitely ones of pure TRUST and God shows us over and over again, that WE are not in control.  We are forever grateful for those reminders, even if they hurt.  HE is glorified and we know He does these things for OUR good.  

We'll Keep You Posted - 

Ryan

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

Hostipital

When Conner was little, he used to call this place the "Hostipital".  He was two years old when we all were thrown into hospital life, and that was over nine years ago.  Nine years of survival mode, with a few breaks in between.  This has become our life, and our ministry, our family's mission.  It's also become the life of our children.  For example, Henry wanted his third bday party to be here in the hospital cafeteria, and so we made that happen for him!  Conner and Henry find peace here because it is familiar, and because people know them here.  They also absolutely LOVE the cafeteria and getting to choose what they have to eat.  


PEACE.  I'm grateful that the boys feel at peace, at home here.  This place very much felt like home for so long, but the longer we are away, the less it feels so familiar, and understandably so.  For those who don't know, Ellie Kate spent most of her life here at OU Children's.  She had long stays and shorts stays.  Ellie Kate absolutely loved it here because everyone here made her feel loved!  She wasn't scared to come here, and neither are the boys.  


Obviously, we've been here to OU for many, many doctor appointments, bloodwork and tests since Ellie died, and each time is hard, although I must say that is has become more easy.  It's easier because we are OUTPATIENT, and I know we are just there to visit.  We've tried our best to avoid hospital admission for Lucy since EK passed away, but it has happened a few times.  Thankfully, she hasn't been in-patient in over a year!  That is a miracle to us, because it never happened that way with Sweet Ellie.  The same smells, sounds, art work, vending machines, and even people - they are all so comforting and yet this time, I have been completely overwhelmed, and not in a good way.  I'm just fighting the overwhelming feelings and anxiety.


Lucy is in the hospital because she is having trouble with her feeds.  She has been screaming each time we try to feed her anything through her gtube, and she isn't able to sustainably eat or drink by mouth.  Her screams of pain over her belly are haunting because it's the same way that EK would cry over her tummy.  Most of Ellie Kate's stays here were because she couldn't handle her feedings.  Either she couldn't keep them down or they hurt her too bad for us to give.  So, like EK, Lucy's been receiving fluids through her port (thank you LORD for her port, so that we don't have to worry about an IV!!).  Yesterday, Lucy started tolerating pedialyte on a very low rate, through her gtube.  That means she gets a little bit of it constantly through her belly.  Last night they were able to bump the rate up a bit and she responded really well!  We plan to introduce formula today and we will not leave until Lucy is able to tolerate what she needs to survive and thrive.  


Lucy's had to have several rounds of pain meds, sometimes heavy meds, because the pain has just been THAT intense.  Watching those tears stream from her eyes - almost every movement and motion exactly like those of her Big Sister . . . I cannot even begin to express what that is like.  Holding her yesterday, I sleepily glanced down and saw Ellie Kate in my arms.  They are THAT identical at times, especially in this setting. It takes my breath away and causes extreme anxiety this stay, which I hate to admit.  Having our entire family up with us last evening was precious, special and it needed to happen, and yet it was so surreal.  We ALL felt it.


PTSD is REAL for parents like us, I have no doubt (and grandparents too, I believe).  Different things can set it off such as the smell of the same soap used in the hospital where you've been, different art work you've seen while there, etc.  Sounds and smells can set you off even outside of the hospital, so BEING here physically, for the SAME things that Ellie struggled with her entire life, has been emotionally overwhelming; mentally overwhelming and exhausting, and physically as well.  I know that might be hard for you to understand or maybe even hard to believe, but it is the absolute truth.  Bottom line:  Ellie Kate passed away because her gut shut down and stopped allowing her to be fed, receive nutrition, process foods, etc.  There were other things that happened shortly after and alongside of that, but gut-issues were the main cause of her last down-turn which quickly led to her death.  Lucy is stable right now, but because of the history . . . well, THAT is why this is so incredibly intense, and I find myself in full-on grief sickness once again.  

All of that being said, I've been doing my best to stay on top of it all, but I know that I haven't returned calls, texts, emails, and FB messages.  I just haven't been able to do it, Ya'll.  Lucy's been screaming so much and up until now, has required complete attention in every way.  We are working extremely closely with the doctors, whom we love, as they are allowing us to choose steps and make decisions along the way.  I LOVE that they are listening to us as we use the knowledge we have received living this life for so long - thinking of ideas, running through what has worked and hasn't worked for Ellie Kate and for Lucy in the past - those things wear you out too, although I wouldn't have it any other way.  I'm grateful that they trust us, and we are blessed to have a great team!  I pray that you have grace and understanding and will see that if we do not respond, it isn't because we don't love you or are not grateful for your outreach!  WE NEED the outreach and encouragement!  I personally thrive off of that in times like these, sort of like a team.  When you are down on your back or are struggling, you look to your team mates to step in and step up, verbally and physically encouraging you along the way, as you make it through the mud, muck and quick-sand.  THANK YOU for CONTINUING to do that with us and for us!  It means more than you could ever know.  


Right now, I'm in the waiting room while Henry is back for his sedated MRI.  We may or may not receive results from that today, and I'm not letting my mind run to the "What ifs" where that is concerned.  I have enough - I'm not meant to carry that as well.  God's got it worked out for Henry's good and for God's glory.  We hope to also receive the results of his sleep study (done Monday of this week), and again I am choosing to give the results up to the Father as he knows exactly what is going on in Henry's body and brain.  


Would you pray for PEACE?  We need God's supernatural peace, the peace that HE has promised, to flood us.  I mean, I want to feel it SO incredibly thick that fear seems an eternity away!  Also, please pray for Lucy's gut to start working again.  My fear is that this is the beginning of gut-trouble and hospital stays to pattern the life of EK, and I'm choosing to give that all to the Father right this moment.  It's too much to handle or hold on too, especially when He controls it AND wants to take it off my shoulders.  Please pray too for PAIN RELIEF for Lu Lu.  

Other ways to pray: 

• for clear and quick results for Henry's tests and for wisdom for the doctors where he is concerned.  
• Pray too for Conner because although he doesn't express it, I know all of these things must weigh heavy on his heart, even if he doesn't realize it.  
• For me and Mike - that God would protect our hearts and guide and capture our thoughts; that He would continue to heal us and comfort us even though it seems impossible to do that here:).  
• for our parents, as they hurt for us and hurt for our children
• for God's provision 
• for Mike as he continues (and desires) to work hard at his job (which he loves), and that God would allow him to concentrate on that when he needs to.  

Thank you for being there for us, Friends.  Thank you for loving and serving us.  Thank you for understanding, for staying alongside, even when we cannot respond or reach-out.  I will update as I am able.  

From the Hostipital - 

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.  

All About Henry

This week has been a rough one, I'm not gonna lie.  If you follow us on Facebook, you know that this is true - our hearts have been hurting with more friends who are going through trials and heartaches (more about that in my next post).  My IC flare has intensified with a UTI that won't clear up, and Henry put us through quite the scare! But, this post is really all bout Our Henry Mac . . . 

I've been so concerned for Henry as he started first grade, his first time to go all-day to school.  With everything he has dealt with this summer, including diagnoses and introducing meds, my heart has been even more tender towards our Sweet Boy.

Henry lost his first tooth a week ago!

Henry's been complaining of a tummy ache and a sore neck for almost two weeks.  I had our nurses look at his throat and it wasn't even red.  He didn't have any other symptoms, and although I did believe him, I thought it was all due to going back to school - getting used to carrying his backpack, getting into a new routine, reading at a desk, etc.

The boys were out of school on Tuesday and he slept in until 9:30am.  We had a full weekend with friends and family activities, so I thought he was just tired.  He woke up and ate a few bites of breakfast and went back to bed until about 4pm.  I kept checking in on Henry and he didn't have a fever, but I knew something was up.  I thought he may be coming down with something, so of course I was looking up symptoms online.  When I finally got Henry to wake up, he was confused and wasn't making much sense.  He was extremely lethargic and said his entire body hurt.  He wouldn't even stand up for me, so I knew he was pretty sick.  It was so close to 5pm that I decided to wait a few minutes and take Henry to a pediatric urgent care right at 5pm.

This new pediatric urgent care close by us is run by some precious doctors from OU Childrens.  These are girls (um, doctors) whom we have seen grow up in the program and it is SO exciting to see them go out on their own like this!  Needless to say, we were thrilled when we walked in and saw one of our very favorites, Dr. P and of course she got Henry right in.  Dr. P had cared for Ellie Kate and Lucy.  She knew who we were, and I had no doubt that God went before us because I was a nervous wreck.

Henry couldn't stand up for his weight check and was very wobbly.  He still was extremely sleepy and out of it.  During some of his neuro checks his little eyes rolled back into his head.  I'm not going to lie, I screamed out to God internally at that moment, "Oh God, do NOT do this to another one of my children!".  It looked so seizure-like and I panicked.  His behavior was worrisome and Dr. P knew we needed to head to the OU ER. She called the attending there to let them know we were on our way and what to expect.  And off we went!

OU Children's ER is usually pretty busy.  We waited a while and finally got back, Henry still lethargic and asleep.  We had a new attending - one we had never met before, and it was NOT the same one that Dr. P had talked to before we arrived.  Shift change happened during our wait and thus we had an attending who didn't know us, didn't know our history with the girls (which has never happened in that ER), and who honestly didn't seem to want to be working that night.

Henry's bloodwork came back normal and so did his urine (which I had to ask to be done).  They did an ultrasound on his belly and found some intestinal issues that apparently are not uncommon, and the kind he has was supposedly supposed to correct itself.

Sparing the details, I packed Henry up and took him to the car while Mike wrapped things up in the ER.  Don't mess with a momma-bear who has any background whatsoever in special-needs or in working with doctors and nurses.  Our expectations are unapolagetically high, and we WILL hold you to a higher standard, a standard you pledged to when you became a doctor.  We left without many answers but SO many of you contacted us with texts, emails and messages.  We know you were praying for us; faithful are the prayers of the Saints!!!

Henry has continued to get better each day, although his neck still hurts a bit.  He had a clean bill of health from the doctor yesterday.  She thinks it could have been a bad virus, and I agree.  He definitely was scary-sick, but now he is better!  Henry in particular misses Ellie Kate so much, and this week he even dressed like her while he was home sick.  I'm not sure what to do with that or how to parent that.  His friends Jazzy and Rye brought him some balloons to cheer him up and he let two of those balloons "go to Ellie Kate" by letting them loose outside.  His little heart hurts.

Would you continue to pray for Henry's health?  Would you pray that the Lord would lead Mike and I as we seek wisdom in parenting Henry?  I'm also conflicted about Henry's schooling, although we do like his school and LOVE his teacher.  I just want to do what's best for him and his tender heart.

Daddy and Henry on our "Henry Date" last night

LUCY . . . 
So this update isn't ALL about Henry:).  Lucy is doing SO well and we were able to get her helmet this week thanks to some generous friends!  God ALWAYS provides, and we've been blown away by your thoughtfulness and willingness to bless us.  We have other things we are going to be able to soon order for Lucy and we have been able to pay some of her bills, which is WONDERFUL (I just cannot tell you what a good feeling it is to NOT get a phone call about a bill because it's been paid for!!).  So, thank you.  Thank you for giving and for supporting us through the "GoFundMe" page.  It's so humbling. With all of my heart, thank you.  

She loves it, I promise!  More pics to follow!  

Still Here

Well, we are still here at OU Children's.  At this time, Lucy is getting ready to start a little bit of formula over the pump.  That means a small amount of formula (about 1.5oz) will go into her belly over thirty minutes.  It's not much, but it's a start! We will see how she tolerates it, and that will determine the next step.  We hope she will do well with this feeding, and that we can get home soon!

Lucy's still having trouble with pain.  She's been screaming terribly and pulling her hair out this morning.  It's so hard to watch.  I so wish that Lucy could tell us what is wrong; is it her head?  her ears?  her belly?  No one knows, and so we guess and we give her pain meds.  She's had morphine and lortab already this morning, and finally she has fallen asleep.

Also, Lucy's ears still aren't looking great.  You can imagine our frustration as we JUST had new tubes placed in December!  I'm not sure why she has so much trouble with those sweet ears, but they sure do hurt her.  We will be doing our third dose of IV antibiotics for her ears this afternoon.  Bless her heart.  Will we always have to be admitted for ear infections?  Will she always get them?  Will she need new tubes?  Will they ever work correctly?  

It's amazing how sick Lucy's ears can make her.  As you've read, she requires the heavy-duty meds through the IV.  She requires the heavy-duty pain meds through the IV.  She seizes more when she's sick, and every sickness causes a host of problems.  What started off as strep last Friday has us here in the hospital this week, and has turned into full-blown ear infections, possible stomach bug/GI issues, dehydration, seizures, inability to take one of her NKH meds, etc.  This, My Friends, is why special-needs mommas absolutely hate "sick season".  

Thank you so much for praying for us.  Lucy and I have both been resting really well overnight at the hospital and our nurses and doctors are taking excellent care of us.  We wouldn't want to be anywhere else in Oklahoma!  We just need our Little Princess to be healed and for her infections to clear up.  Thank you for surrounding us with love and prayer!

Ryan