Back in The Groove

Yesterday was the first day back to school for our children.  Conner is now a big SEVENTH grader, starting junior high!  Henry is back at our neighborhood elementary school with all of the familiar faces, places and sounds.  Lucy also is back at her same public school, which houses the most significant medical needs in our district.


Public school is a new thing for me, as from 3rd-12th grades, I attended private, Christian schools.  I have to tell you - I have been SO happy, impressed and reassured with our public school experience here in Moore, OK.  There's something very special about the teachers here, who genuinely love their students and love their community.  They want to see their students succeed while also enjoying the learning process.  Our community is very tight-knit, probably because of the many tragedies and storms (literally) we've faced together.  There is a solidarity there that is priceless.

The main thing I've loved about our public school experience is the level of communication we have with each of our schools.  If you know me, you know I'm big on communicating clearly, so I love that our teachers eagerly reach out to keep us posted on what's taking place in the classroom and on the playground.  All of these things are especially important for Mike and I as our kids have seen so much, and have been through so much, in their short lives.  Although we do still dream of sending the boys to private, Christian school, I can say that I fully trust the teachers now in our lives here in Moore.  God is so good to orchestrate this all for us!

Conner outside Brink Junior High

Ya'll,  I am just THRILLED, BEAMING, SO FREAKING HAPPY over how the first day went for all THREE of our kids!

• Conner:  Conner and I had a great time this week at his open house as we practiced going to his different classes, met all of his teachers, and walked around the entire school (every room) until he felt comfortable enough to be there on his own. After the event, Conner took me on a date for mexican food - a fav for us both. We made sweet memories I will treasure forever.  It was intimidating, dropping him off Friday morning, as the kids all look so big and the girls . . . well, they look like women!  Women in 7th and 8th grade, and here's our tall, skinny Lad, happy and nervous for this monumental occasion.  His first day was, "AWESOME"!  No tears, no tragedies - just happy reports of his teachers, friends, running to and from classes, and best of all . . . lunch! 

Back-to-School Night!

• Lucy: Lucy loves school, just like Conner!  My Mom and had a great time taking Lucy by her classroom this week and Lucy literally squeeled with joy when she saw her teachers!  One of the teacher aids was holding LuLu, and as we were leaving, I told Lucy to give Miss K a kiss.  She immediately leaned over and kissed her, clear as day!  It's that type of clarity and cognitive growth that we are seeing in Our Girl, you guys.  I just can't tell you how amazing it all is!  She's signing for a "drink", which she wants most of the time.  God is healing Lucy in many ways, and is allowing her to enjoy life! 

Lucy and Ms. Heather, ready for another great year!

• Henry: We were so worried about Henry's first day.  He had a hard time at Back-to-School night, even though we got there an hour before anyone else, in hopes of getting things done before the crowds arrived.  It was overwhelming.  He's felt the change all week, needing extra sensory input, such as climbing under our fitted sheet in bed because it feels "tight and safe".  

          Henry woke up with Conner yesterday, around 615am, which is WAY earlier than his normal.             He got dressed and ate breakfast and helped us take Conner to school.  He was starting to get   

          bored and tired by the time his school was about to open.  That had me concerned, but he 

          hopped up and ran to school with the rest of the kids in the neighborhood.  We did have one 

          incident at school, where Henry wanted to come home and get a bottle of water and see if I was           home, but other than that, his day was "GREAT!".  Ya'll, this is HUGE!  Henry has had NO 

          tears over school.  NO  fits or breakdowns.  Change is very hard on him, but he    

          PERSEVERED and pushed himself, and he made it through the day, passing with flying             colors!  Mike and I are elated and pray that this behavior will continue.  

Henry and Mommy, on our date after the open house

With this new school year will come change - change for our family.  I won't tell you specifics, but we are finally acting on some things we feel God has called us to for sometime now.  For a long while, I have felt like we were "stuck"; stuck between the Northside of the City and South, stuck between communities, stuck between groups of people . . . just stuck, and that hasn't felt good at all.

I have felt as though we've fallen through the cracks, and that isn't a good feeling to have. g reason for that though, is because we've been dragging our feet and haven't made the steps the Lord really wants us to.   I've been crippled by  fear of rejection - a fear I live with on a daily basis.  It is extremely hard for me not to find my worth in others and in what others say or think about me.  Thankfully, the Lord has been bringing me through that and in making some big changes, we think things will only get better in this area.  

 We Celebrated the Happy School Day with a Chuck-E-Cheese Treat

Lucy wasn't so sure about the "excitement" of C.E.C.

We want to simplify our lives while following Christ's lead.  What may be "simplifying" to us may not look that way to the world, or even to fellow Believers.  That's what we will be doing though - allowing the Lord to do the realigning, redesigning, relocating, redirecting.  CHANGE, for the better.  More security.  More simplicity.  The Lord will bless obedience, and for that I am truly excited - I can't wait to see what HE will do!  I can't wait to see what these changes will do and how they will mold our family, our friendships, our walks with the Lord. 

 It is definitely difficult to step out in faith like this, bc let's face it, most of our stepping out in faith has been with the health of our children.  This is different and requires actual physical movement and physical steps.  It's exciting because we know the Holy Spirit is moving in our lives and we can once again taste it, sense it and feel it!  

Thank you, Father for stepping in and for showing us where to go and what to do.  Please continue to reveal yourself to us, Lord.  Give us the boldness to step out and make new choices, that may be uncomfortable and painful.  YOU are so good.  

Heart to Heart

A heart to heart . . . from deep within my weary Spirit.  It's been a tough few weeks.  Heck, it's been tough ever since school started - when the schedules changed.  We all know that schedule-changes are just plain hard.  They are especially hard on children.  Changes in schedules are even harder on children who are under extreme stress, children with things like PANDAS.


This week, I met with Henry's teacher as well as the principal and other staff members of the elementary school where the boys attend.  We had Henry's IEP meeting, and it went incredibly well!  IEP meetings can be incredibly stressful for parents, even when they turn out well.  As a momma, you want to make sure that your child is receiving every opportunity possible.  You want to ensure their safety, security and happiness while at school.  As a parent, you want to make sure that your child has opportunities to learn and grow in a healthy environment, despite any disabilities they might have.  So, the days leading up to the IEP meeting are complicated, emotional and stressful - at least for me.  You can imagine how grateful I was to have such a good meeting with these precious women!


At the IEP, I found out that Henry is bench-marking in his class.  He is doing INCREDIBLY well!  He doesn't want to do homework and he doesn't want to study for spelling tests (truthfully, he hasn't yet studied for a test), and yet he is excelling.  Henry's also learning to make better choices at school, and he has a patient teacher who is determined to help him succeed in the classroom and in life.  It is ever-so-clear that God wanted us to STAY in this house so that we could stay in this school.


Henry was thrown-off today for some reason and he ended up running from me and running from the school, while I was there to drop him off.  After running to and from our home a few times and then back and forth to school, it was evident that Henry just couldn't make it through the day in the classroom.  I tried it all, even petting the neighborhood cat several times (which was a true sacrifice for me, ya'll!).  The secretaries saw that we were having a hard time getting into the building, so they sent Henry's teacher out to try to encourage him back in.  Even his kindergarten teacher, whom he adores, came out to try to love on Henry and get him to come to school today.  These ladies encouraged my heart and reminded me to breathe in the midst of Henry's outburst.   I am so grateful to have their support.  I know not every school would be this way, and I certainly don't take it for granted.


Life is hard and busy when I'm caring for Henry.  It's very intense, although I don't expect everyone to understand.  I didn't understand, although I thought I did.  Mental special-needs and behavioral disorders are so much different than physical disabilities (like not being able to walk, talk or eat - like our Girls).  I've always had compassion for families, mommies in particular, whose children suffer from these things, but it's a whole new ballgame when you are living it and trying to parent through it all.  That being said, I rarely can use my phone.  I don't get chances to call people back and many times can't text you back for several days.  Emails are now the same way, as my time on the computer late at night has diminished.  I'm now too exhausted to stay up, especially when we have a night nurse (thank you Lord for night nurses!!).  I know I frustrate people, even my family, in not communicating well and believe me, it drives me nuts too!


I WISH I could do better with Henry.  I WISH I could better take part in life, having the energy I used to.  I just don't.  Maybe it's my age, maybe it's my IC but it's probably just a messy combination of life and all it's current circumstances.  I just want to make sure people know that I still love them, even if I can't be as involved as I once was.  And when I don't call you back or don't answer your messages, it isn't because I don't value or appreciate you or what you have to share; it's just that my hands, heart and mind are too full for anything else at that particular time.  I'm asking the Lord to make straight my priorities and allow it all to fall into place the way that HE sees fit.  I'm asking Him to open my heart to how He sets that all into place too,


We have some big tests coming up for Henry, starting this coming Monday.  We start the week off with a sleep-study and end it with a sedated MRI.  I'm not sure how Henry will handle these changes in schedules and environments.  It pains me to even think about it, really.  Doctors and nurses, poking and prodding, different beds, different lights . . . would you keep Henry in your prayers as we face these things?  


I want to thank everyone for your patience with me - for your patience with our entire family - as we still learn to navigate PANDAS and all that comes with it.  We will always be learning, and that's okay.  All parents do that, right?  All individuals do that too.  Life is constant learning, and that's a good thing.  Holy Spirit, may we be more aware of the things you are trying to teach us, making us more like Jesus.  With every situation, may we learn to rely on our Father for wisdom and guidance.  Lord, be near to us!  

*Enjoy a sneak peek at Lucy's bday photos (we celebrate her FOURTH birthday this weekend!):

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.  

A Huge Need for a Little Heart

My first draft for tonight's blog had to do with what God is showing me and reminding me as He is doing so in some very sweet ways.  However, this evening brought on some extremely hard things.  Henry had a melt-down - a blow-up like we haven't seen for months.  It took a few hours for things to settle down in our hearts and in our home, and we are finally all fed and bathed.  I have Sweet Henry laying here beside me in bed as I type.  This little boy who is sleeping so peacefully next to me - you would never know the turmoil going on in his precious head.

Oh, ya'll!  Behavior special-needs and mental special-needs can be so much more intense than that of "mere" physical special-needs!  I've said this so many times, but I am still convinced that parenting the Girls and managing their illnesses, is so much easier than trying to figure all of this out with Henry.  My heart breaks over and over again, not that it doesn't or hasn't with Ellie Kate and Lucy's health.  This is just different because Henry looks so healthy, so typical.   I don't have a doctor serving as our team-leader, helping us navigate through all of this, like we do with the Girls.  There is so much pressure on me and on Mike, when all we really want to do is help his little heart heal.  

Since meeting with the new psychologist, we've tapered down on several of Henry's meds.  We wanted to see where he was physically and emotionally without those strong medications,  with the hope that we could stay off of them for good (not that we are against medicine in any way, shape or form - we just want to simplify things for Henry).  We were hoping that the outbursts were gone for good - that maybe they were somehow induced or triggered by the medications.  Tonight we feel defeated in knowing that he still is  having major trouble, even off of these meds.  What do we do now?  What do we change?  Where do we go from here?  Which doctor is supposed to help us?  I just don't know.  WE just don't know.

We need your prayers.  We need the Lord to move on Henry's behalf.  We will start testing up at the school this week as we prepare Henry's IEP for next fall.  I am incredibly nervous to take Henry to school in the morning.  He has been out of school for so long because of PANDAS and that it entails.  It scares me to think about taking Henry in the morning, although I know that this must be done.  It has to be done for Henry's education and it needs to be done for the supplemental insurance we are applying for through the state.  There are so many "what if's" that I can't even go there right now!

Thank you in advance for praying for us and specifically for Henry.  We need the Lord to move in a mighty, mighty way - to show Himself strong; to show Himself as Jehovah Rapha, the God Who Heals.  We need God to show Himself as Jehovah Jireh, the God Who Provides.  We need Him to be Jehovah Shalom, Our Peace.  Father, we need you!  We are so desperate.  Step in and relieve my son from this affliction.  Heal Henry, Lord!  Give him supernatural peace as he goes to school tomorrow - even as he wakes up and gets ready for the day.  We need the peace that only you can give.  Protect Conner and Lucy as we go through these transitions with Henry.  It is so hard hard on them too, Father.  Truly, Lord - we are so very desperate to see you bring relief; to see you move on our behalf in a miraculous way.  

--Ryan