Daily Bread

It's just been too long since I've written and updated the world, and all of our friends, on how this roller coaster-life is currently going.  If you've followed us from the beginning, you likely remember that silence from the McLaughlin Clan is usually a good thing!  It means that things haven't been too wild and crazy, although we most certainly continue to have our twist and turns as well as those unexpected drops where you lose your stomach.

We celebrated my 38th birthday last weekend, and it was such a treat!  Mike's parents and my parents both pitched in so we could have a date night, plus an entire day together, PLUS a family birthday party!  I felt so loved.  It was perfect!

As I type, Lucy is laughing and giggling from her bedroom.  It is SUCH a precious sound from this little "Kitty" of ours.  Lucy gained that nick-name when she was just a few weeks old.  Although she cried at birth, she didn't cry at any other time while she was in the NICU.  The first time I heard her voice (other than in the delivery room) was in the NICU Village, where the parents stay the night with the children, learning to take care of those extra special needs they will go home with.  Lucy was about a month old, and I woke in the middle of the night to this cat sound.  I swear I thought there was a cat somewhere in that room or on that floor!  I even looked around and finally, I realized it was our sweet,golden-haired girl, expressing herself in voice independently, for the first time.  From then on, Lucy has been known as the "Kitty Cat".  It's funny too, because Ellie Kate was "Wild Cat", with her tomboy behavior and reputation of pulling hair and biting both friend and foe.  Ellie always did it in style though - hair bows and tutu's, glitter and frills.  Oh, what a GIFT it is to be their Mother!!

Recent photo of Ellie Kate's Spot, ready for the Month of Love!

Since I last posted, Lucy had an ER visit for a UTI.  Henry had a sedated MRI to check on the abnormalities shown on the MRI taken in October.  Mike had a bone scan on the ankle and foot he injured right before Christmas.  I've had the "usual" - migraines and some very painful, intense Interstitial Cystitis flares, but overall the Lord has really helped me get around and do everything I've needed to get done!  Conner has floated right along and continues to be an encouragement to both me and Mike, stepping in and helping so often.  He is such a joy!  God has protected our family and continues to provide for us.

More Updates . . . 

• Lucy's infection has healed. She is finally back in school full-time and is loving every moment!  Lucy has started screaming spells again, which are just awful for her AND for us.  She seems to wake up, not knowing where she is, almost as if she can't see where she is.  We appreciate your prayers that her little mind will settle down and that these spells will completely stop.  

•  Henry's started a new, weekly Behavioral Therapy with a trusted professional, and he is doing incredibly well with it.  His PANDAS has been under control the last two weeks, and with some medication tweaks, his OCD has finally settled down, allowing him to enjoy life a little more.  

Henry has a new love (or obsession) with basketball, and is constantly bouncing his OKC Thunder basketball around the house and outdoors, practicing all along the way.  His new goal - to be in the NBA.

• Conner is happy that his spring soccer season is underway and he is enjoying the warm weather that allows him to spend hours after school playing with his friends.  It's so fun to watch him develop relationships; to see him grow and change.  He recently got his bottom braces and his top ones will soon follow!

Our eldest has been attending a youth group at a local church, which we are super excite about!  Conner gets to go with his school friends to church each Sunday night, thanks to some precious friends who pick him up and bring him home faithfully.  He is LEARNING and drinking in all that he hears and sees when he goes. It is incredibly important to us that Our Boys have community where they do life - physically, academically and now spiritually.   It blesses Mike and I so much to watch Conner grow spiritually, especially bc he is doing it apart from us!  Conner takes the initiative and goes, loving each moment.  I'm grateful he has some really good school friends who come from awesome, Christian families!  We are SO grateful for the "typical" experiences we have with Conner!

Our BIG Prayer Request is for Mike and his ankle.  He is set to have reconstructive surgery this Friday morning.  It will be rather extensive, seeing that this ankle (and bone) has been infected before, so there is already trauma to that area.  He has torn ligaments, separated tendons, and more (doesn't it all sound lovely?!) but all should be repaired by this surgery!  We are super grateful for wonderful surgeon, who has a great reputation and strong character.  He is a Believer and we know the Holy Spirit will guide him throughout Mike's surgery.

We covet your prayers for the following:

• That God would give wisdom to the doctors/surgeons/nurses involved
• That God would supernaturally guide the surgeons hands 
• That Mike's bone would respond well and that NO INFECTION would come up
• That pain would be limited
• That healing would be swift
• That Mike could get back to work quickly (that is HIS request, btw:)).  

There are some special Truths I want to share, including parts of our sermon at Bridgeway Church yesterday.  Today doesn't seem to be the day to share it all with you, but I do want to leave you with this: 

John 6:1-35

Jesus didn't just come to GIVE us our daily bread.  Jesus came to BE our daily bread - to be the bread that fulfills us completely, like those who were fulfilled at the 

"Sermon on the Mount".  

There is NO other satisfaction than Jesus.  There is NO other fulfillment.  We cannot add to it either, you guys!  It's not, "offer your best and I will do the rest" - it is complete surrender to God, giving it ALL to Him, knowing that I have NOTHING apart from Him. 

 It isn't, "God helps those who help themselves" (which isn't in the Bible, btw). 

It is JESUS.  HE is our satisfaction.  Not politics, nor leaders; not riches, nor security, not our abilities or disabilities . . . it's Christ alone.  

I pray you find your ALL in Christ Jesus today; He who fulfills us continually, always and forever. 

To Hear the Entire Sermon from Seth Stewart at Bridgeway Church, visit the following:

http://www.bridgewaychurch.com/mediaPlayer/#sermonaudio/382

Surgeries, Infections and More

What a week!  From surgeries, to hospital stays, infections, sickness and more - we've covered a lot of it in just a few days. I've found myself recitiing Psalm 27:1 over and over again.  In fact, I've been singing it!  My Mom taught it to us in song when we were children, and I've enjoyed singing it to her melody throughout this week of busyness.


Momma came home this week, and although she is weak and tired, she is doing incredibly well, and her personality is shining through.  She still has some physical issues going - outward and inward.  She is so strong and is fighting through very hard.  We are so proud of her and so thankful for all of your prayers!


Mike was out of town this week for work.  He's in the oil and gas industry which, as everyone knows, isn't doing so well right now.  Amazingly, the Lord alone is responsible for keeping Mike's job safe and sound, and for helping Mike continue to work hard.  Unfortunately, Mike's ankle is STILL causing him a ton of pain and seems to still be infected.  This is from the same injury in December, when he fell out of the attic and hurt his ankle.  He tore several ligaments and sprained it really badly.  Doctors believe he needs surgery to repair it, but first, they need to rule out osteomyelitis.  This is the same exact thing Mike dealt with in high school, which almost took his life. It's super scary to even think about this infection being a possibility.  But, right now, we are choosing to trust the Lord.  As Psalm 27:1 says, The Lord is our Stronghold!  Whom shall I fear?!  This Thursday, Mike will undergo a bone scan that will reveal whether or not the osteomyelitis is back.  We covet your prayers.

Lucy had her third ear tube procedure on Friday, which went incredibly well.  Mom came with me, and although I could tell she was so tired mentally and physically, she pushed through to help me since Mike wasn't able to be there.  Henry was having a hard day, so my Dad needed to care of him and the PANDAS flare that came up this week.  I am FOREVER grateful for parents who are willing to drop everything, even to the detriment of their OWN health and happiness, to make sure we are well taken care of.  THAT is true love, you guys.

Nunnie and Lucy Belle pre-surgery

Valentine Princess in the OR Waiting Room

We've had to stay home from Church again this Sunday due to Mike's ankle, which is hurting even MORE after his week away on work (he was standing all day, every day).  I'm recovering from a sinus infection which hasn't responded well to antibiotics, and has kicked me off my feet worse than ANY stupid sinus infection I've ever had in my life; and Henry is recovering from med increases due to the recent flare.  Most importantly and worrisome to this Mommy right now, is that Lucy is running fever.  It isn't super high, but we know that, when Lucy runs any type of temp, she is sick.  Her trembling and chills remind us so much of those of Sweet Ellie during her last days of hospice.  Lucy is NO WHERE NEAR that sick, but the behaviors at this time so resemble each other, and that can be hard.  The boys have noticed it too, how much Lucy resembles Ellie Kate when she is now so sick and as she is now getting bigger, closer to the size Ellie was as they last remember her here on earth.

Ellie Kate's "Spot" ready for Valentine's Day

Yes - we DO crave your prayers, your words of encouragement, your revelations from the Lord on our behalf.  Truly, God has given us a peace, and I can say that with FULL confidence.  But that doesn't take away the memories, the sad feelings and thoughts that come along with watching another NKH Princess suffer.

The World around us is suffering.  It is OUR job, as Believers, to offer hope, hands and feet.  And God will work it and use it and play it out for His Glory and for the Good of ALL involved - the sick, the servants, the obedient, and their families.  He is SO good.  

Psalm 27:1, "The Lord is My Light and My Salvation, whom shall I fear?  The Lord is the stronghold of My Life, of whom then shall I be afraid?" - ESV

Lamentations 3:22-24, "God's loyal love couldn't have run out, his merciful love couldn't have dried up, They're created new every morning.  How great your faithfulness!  I'm sticking with God (I say it over and over).  He's all I've got left." - The MSG

Momma and Baby

Last Wednesday afternoon, I received a text and a phone call . . . my Daddy was taking Momma back to the ER, to the CLOSEST ER, to be exact.  He thought he could get her faster if he jumped in the car and drove her himself, instead of calling 911.  She was breathing just fine, but was incoherent and dizzy, and also extremely sick to her stomach.


After a very long night, Mom was admitted back to the ICU, but this time she is in a different hospital.  She has had assistance breathing, but has not been on the ventilator - a HUGE praise!  At this time, mom is in a regular room and is physically doing much better; she is stable as far as her numbers are concerned.  However, she is unable to eat because she is unable to respond to simple questions and commands.  She doesn't know what year it is.  She gets confused on where she is, constantly asking where she is and why she is there.  She doesn't recognize my sister and myself at times, but consistently does recognize my Daddy.  She cries out and moans in pain.  She has an NG tube that is constantly sucking green bile from her stomach (there is so much - we just don't know why it keeps producing).  She is on fluids but isn't getting any medications except for those that will help her anxiety and nausea.


I want to make some things clear about my Momma and all that has transpired . . . NONE of this has been caused because of an overdose of any kind.  What DID happen was that she was sent by her PCP to a new pain doctor.  This doctor didn't seem to pay close attention to what she was taking for other ailments and didn't seem to pay close attention to the large amount of medication he prescribed her.  He also didn't seem to think through any possible interactions of with current medications my mother was on.  So, on the second day of my mom taking the medications this new pain doctor gave her; when she was taking the medications EXACTLY as she was told to take them, it caused what appeared to be a severe reaction/interaction AND on top of that, mom had too much of the medication in her system, per her doctor's instructions.  This has been verified by all involved and there is absolutely NO questions of negligence or harm on the part of my Sweet Momma.  She was absolutely doing what she was told.  It was absolutely the fault of the new doctor (and in our family's opinion, the fault of all involved).  This was immediate apparent to the ER physicians and nurses who commented on the doses Mom was on, and thus a lawyer was contacted and now has taken over our case.  Thankfully, he is taking great care of my Mom and Dad.  We would love continued prayers for wisdom and guidance for this attorney!


This second hospitalization DOES indeed have something to do with the initial one, unfortunately.  When Momma was at St Anthony's they took her off ALL medications, even those she had been on for over 30 years.  They wanted to start fresh and clean, which sounded wonderful to us - it sounded like the best thing to do for mom. We hoped the delusions and other impairments Momma faced there were because she was coming off of those medications that had been in her system for so long.  When Mom was discharged from St. Anthony's hospital this past Monday, they went ahead and put her back on most of those same medications again (I didn't know this until recently).  This included the two medications that new doctor had put her on, except that the doses were much, much lower.  They wanted to wait for her to seen an internist to change everything appropriately.  I am SO angered at this, you guys.  Maybe it was the right thing, but it just doesn't feel right to me.  I wasn't there and I didn't speak with the doctors that day - My Daddy did and I know he too only wants what is best.  And we seem to naturally just trust doctors and what they say and what they tell us to do, because, well . . . they are DOCTORS.  We think they are smarter than us and more equipped, and in most cases, I am sure that is the truth.  But they aren't always right - we've learned that for sure.  They aren't always right only because they also are human, just like you and just like me!  That's why they call it the "practice of medicine" (as Michael so often reminds me).  They are just doing what they think is best and sometimes (not all the time) there are doctors who don't pay enough attention, there are doctors who discharge too early, there are doctors who don't put in enough time to make sure things are all settled before they send the patient home.  I'm scared this is what happened with Mom's last hospitalization.

I'm not sure how Momma will be from here on out.  I don't know if she will get better.  I don't know if we will get our Nunnie back, and that breaks my heart.  I hate that Mom feels so paranoid and confused.  We covet your prayers and love for my parents during this time, that is for sure!

On a MUCH happier note, I'm feeling more at peace than I have in a very long time.  God has given me great patience with life.  He's been calling us to simplify (me specifically), so I've taken a break from leading Hope Link and I've stopped trying to do Plexus and Rodan and Fields.  It was CLEAR that God wanted my attention and didn't want me striving to do those "good" things right now.  Sometimes we must let go of doing the "good" in order to taste the abundant greatness the Lord has to offer!

In all of that, God has continued to deepen our desire for another baby.  We won't be having any other biological children.  It's impossible for us to do that any longer and it's just too scary, knowing that one out of EACH of our pregnancies could result in NKH.  We believe God is calling us to adoption - the adoption of a newborn baby girl.

We don't know God's timing.  We don't know if this little girl will come to us soon or if it will be a while before God allows her to come into our lives.  He has shown us SO many signs in the physical AND spiritual, and we have no doubts that this is what He is leading us to.  We just don't know when, but we are eagerly placing that all in His hands.  We don't want ANYTHING that is NOT from Him, and I mean that with my whole heart.

As we sat to dinner last night, Mike and I both felt like someone was missing.  It wasn't Ellie Kate though, as oddly as that sounds.  We were missing a little baby!  It's strange how we both felt it, but it's just like God to do that and to unify us in our feelings and desires.  We DO know that God will bring us a baby by "word of mouth" and that we won't be going through an agency (unless God changes our hearts).  We believe this won't be a stressful thing, but a beautiful, natural thing from God.  We wanted to share this today so that you can put the word out, if the Spirit so leads:).

For six days last week, we were able to take care of a precious, gorgeous little baby who lives at the Oklahoma Baptist Children's Home with her mommy and big brother.  This little one doesn't need a home - she a one and her mom is working hard to make an even better one for her and for her brother.  It was just so precious to see our family open up to that Little One, who came in a stranger and left part of our family.  The boys adored her and have been asking since about adopting a little girl!  They still have some mixed feelings, but overall, they were smitten with the One and with the thought of a baby who can "do things" and who isn't "NKH", as Henry so kindly states.  I'm so grateful for that time with this baby, the time which showed us that it WAS possible for us to have FOUR children again and to be happy and joyful - it showed us we could do it, and happily!  It made us even more excited to see what God has in store.

I was able to talk a bit about this with my Momma on Tuesday, when she was back to being more of herself and when she was quite coherent, sitting here on our couch, in our home.  She was so excited at the though of another life (cautiously so, as we all need to be - there is so much that goes into it).  She and Dad prayed over me about it (everyone else was at school and work).  It was precious to hear them pray out loud about this desire God has so deeply laid on my heart.  I don't know why the burning is getting stronger, but it is.  I am grateful to have life and love to look forward to in this rough season of death and of the unknown with my Momma.  I know my Mom would feel that way for me too - Joy in the midst of sorrow.

God IS faithful, even when we are not.  I think He we see Him the most faithful then!  Not that He changes, but WE change during our desperate times of needing him.  When we are most desperate, we see Him most at work.  When you are desperate, IF you are desperate today . . . call out to Him!  Surrender to Him.  It is a constant surrender, a constant giving-over to the Lord.  I promise you though, it's so worth it, Friends.  This is the Life we are called to as Humans and as Believers - a life of complete surrender!  Surrender of our hopes and dreams, surrender of our health, our family, our jobs, our talents, our riches, our burdens, our weaknesses, EVERYTHING.  Give it to Him today and watch Him step in and work.  He alone is faithful!

Ryan

I Thess. 5:24 - "He who calls you is faithful; He will surely do it" (ESV)

Awake!

My Mom is awake!  The doctors were able to wean my Momma off the ventilator this morning and so far, she's done incredibly well.  She is still on oxygen and has her central line, which is providing an avenue for all of the meds and fluids that she needs.  I just can't tell you how joyous it was to walk into that ICU room today and see those tubes out of my Mom's mouth!!

Mom is still hurting and still has a long ways to go.  There is much healing that needs to take place, and it may take a long time.  She's struggling with confusion and also with hallucinations.  Some of this is normal and to be expected because she has been through a major trauma.  They may be running more tests later this week to check her status in other areas.

For now, we will continue to sit with mom and help her move around in her bed.  When she continually asks us where she is and why she is there, we will fill her in.  We will help her wipe her mouth when coughing and dry her tears with kleenex.  She needs a lot of assistance at this time and we are happy to provide it!

We are incredibly grateful for your steadfast love, encouragement and prayers!  God is so good to breath life into my Momma's lungs, just as we asked Him to.  He His faithful - when we see Him move and even when we don't.  His ways are not our ways, but we can always, always, always trust Him - even when it hurts, even when it doesn't make sense.  We know that every trial, every heartache, is working for OUR GOOD and for HIS GLORY, for those who know Jesus as Lord and Savior.


Resting with a Grateful Heart Tonight -

Ryan

VENTILATOR

This post was supposed to be full of updates of Lucy's hospital stay and Henry's PANDAS treatment.  There were supposed to be pictures of Mike and his surprise 40th birthday party, which we had last Friday night.  All of that isn't as important right now . . . it's not as important as My Momma.


Late yesterday morning, my Dad came home from running errands and realized that my Mom wasn't yet awake, which was strange.  He went in to wake her up and she seemed in a really deep sleep.  After a little while, when he realized she wasn't responding to him calling her name, Dad went over and started shaking her and trying to wake her.  She was limp, although she did mutter a few words.  Dad got her to the car and took her to the ER.  They couldn't quite get her stable so they transferred her to St. Anthony's in Oklahoma City.  Her numbers there weren't staying stable either, so they had to intubate, which means they had to put Mom on the ventilator.


My Mom started going to a new doctor last week, and was really unsure about him and about some of the treatment he prescribed.  It looks like she is having a severe allergic reaction to the medication she was prescribed.  The doctor's at the hospital have been horrified at the medications this doctor had my Mother on and legal action is being taken.


I think I am in shock, really.  It's very hard to see my Momma on the vent.  I've seen my Baby Girl on the vent too, so I'm not a stranger to it.  The pumps, the monitors, the fluids - we are all used to those things, which I guess is good in situations like this.  I think it makes things easier, at least.  I was able to sit with her for several hours today, which was comforting.  She woke up for a while and could answer "yes" and "no" questions.  She wondered why she was there and why she couldn't breath on her own.  I'm so thankful I was able to see her awake for a little bit.


The plan is to take Momma off the ventilator tomorrow.  As many of you know, the longer one is on the vent, the harder it is to come off.  For that reason, we would like to see her come off.  We also want to see her body working correctly though and we don't want her to be in pain or agitated in any way.

Ways to Pray:
1.  Healing - pray that Mom is completely healed and that there is no damage
2.  Rest - pray for rest for Mom and Dad
3.  Wisdom - pray for wisdom for the doctors, nurses and for my Dad as he contacts lawyers about the situation.

Also, the Boys know Nunnie is sick and in the hospital, but they don't know any details nor that she isn't breathing on her own.  We would like to keep it that way.  Thank you for helping us protect their little hearts.

We covet your prayers, love and support.

2 Cor. 12:9,  “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

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

A Whole Lot of Updates

There are just so many updates, ya'll.  Updates on Mike, on Lucy, on Conner, on Henry . . . where do I even begin?  Let's make it easy with some bullet points . . .


Michael -

• Mike had an MRI last Friday and we are waiting on the results which will tell us whether or not he will need surgery for his ankle (which he severely hurt by falling out of the attic on Dec. 22nd).
• He has still been in pain, especially upon waking and at the end of the day, but he is a champ and is pushing through.  The ankle is still quite swollen and doesn't yet look like it's old self.
• Mike turns the BIG 4-0 on January 21st and I cannot wait to celebrate this man who loves and serves his family in so many beautiful ways!  Seriously, he comes home late from work and gets right to parenting, taking over for me, helping with dinner (or making it for us), etc.  He doesn't stop until around 1130, when we finally get kids asleep in their OWN beds (he stays in the boys room until they fall asleep).  How many daddies do these things?  God is good to give me THE BEST husband for me! 

Conner -

• Conner has begun the braces process and had spacers put in last week
• He is super nervous for those bad-boys and his heavy tears remind me that he is still a soft-hearted little boy and not a teenager (or pre-teen, tween or whatever they are calling themselves these days). 
• Conner now regularly helps me by feeding Lucy and he can do it all by himself, even checking residuals and cleaning up afterwards.  He is a GOOD boy, you guys.  I don't ever want him to feel forgotten in the midst of our chaos. 
• He didn't get that computer for Christmas but is working hard for it for his birthday in Oct (if you see him, he may ask to do some odd jobs for funds;)). 

Lucy -

• Lucy currently has severe infections in both of her sweet, little ears.  It all started about a month ago and I'm afraid that the infection just never truly went away.  I feel like I've failed Lucy as her momma and waited too long to have her ears checked by the doctor. 
• She is now on some good pain meds and is receiving rocephin shots (we had our first round last night, our second round tonight and will end with the last two shots tomorrow evening). 
• Even with the pain meds, Lucy was literally up ALL night screaming out in pain.  It breaks our hearts and I can only hope that she understands when we tell her that we are helping her and that it will get better soon.  Holy Spirit, will you show those things to Lucy's heart so that she knows she will feel better soon and that she will know her mommy and daddy are working hard to help her?
• Lucy is screaming as I write this (11:23pm), so please pray for relief of pain in the name of Jesus.  Pray for immediate healing.  Pray for peace to surround her body.  Pray for stinging and aching to go away.  Pray for angels to visibly surround her in her room tonight so that she will feel extra comforted and cared for.  Pray for our night nurses too, as they care for Lucy while she is so agitated. 

Henry -

• Because of God's goodness, we were able to see a PANDAS specialist this past Monday!  It was WONDERFUL to be validated and to hear that all of Henry's symptoms and behaviors ARE INDEED PANDAS symptoms!  There aren't any specialists here in OK and many of the doctors don't yet believe in the disorder at all, so it was a huge deal to know that, "without a doubt", Henry's testing, bloodwork and behavior all clearly pointed to the dreaded PANDAS. 
• For the very first time, we had a doctor explain PANDAS to us!  It was incredibly helpful, seeing that we've been getting most of our information from the real experts - other PANDAS parents, as well as from other places online. 
• We set up a plan and have started all-natural supplements.  We will also be tapering down Henry's strong meds because, as we have read, they can cause more HARM than good in children with PANDAS.  Henry has done well in the actual taking of the new pills, which is a good thing.  He understands the new plan, and he now understands PANDAS better. 
• Unfortunately, Henry had a very hard time at school today and had to come home.  The teachers and staff did the best that they could and my Dad even went up at one point to calm him down and get him back into the classroom.  Henry is currently struggling from EXTREME separation anxiety (with me) and from OCD (specifically with him thinking he has a temp or feeling the need to check his temperature).  These things are causing him to be a prisoner. 

          Conner overheard Henry in the office today and he wanted to be sure that I knew that Henry 
          wasn't throwing a tantrum.  He told me about Henry's "crocodile tears" and how "he couldn't
          catch his breath because he was crying so hard for you, mommy!".  Conner didn't want his
          brother to get in trouble for this particular outburst.  He said that some of his friends heard it
          and were making fun of Henry and Conner quickly put an end to that, telling them that, "He
          can't help it!  It's his disease".  It warmed my heart that God is allowing Conner to better
          understand what Henry is dealing with.  It made me so happy to hear that he had taken up 
          for his little brother!

        Mike and I are still researching, still pushing, still asking questions - I want to know how to

        help Henry at school.  I want to see him succeed.  He is so intelligent, of that we all are sure

          of. I just want him to feel safe and secure wherever he is and right now, he doesn't feel those things.  He cannot control his thoughts and he cannot control his body either

          (he is also having verbal tics).  Would you pray that God would give us wisdom as we try to parent and lead all three of our earthly children well? 

 

 

• We are still learning SO much about PANDAS/PANS and want to share that information with you, just as we have shared with you information on NKH for so many years (leave it to us to teach you the rare stuff - ha!).  There are many resources out there, but one of our favorites is the Pandas Network:  http://pandasnetwork.org/

• For a simple list of PANDAS symptoms, check out this link: http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/

• There is also a special site for doctors and medical personnel: https://www.pandasppn.org/

• Lastly, I share with you a link to a movie trailer concerning PANDAS.  The movie itself will be released later this month, from what I understand.  We invite you to watch, even for a few moments, to really see and to better understand this disease and all that it involves, particularly in the patients and their families:  http://www.mykidisnotcrazy.com/

 

 Oh, Jesus!  Rescue Our Son!  Deliver him from PANDAS!  Heal Henry in the name of Jesus, for YOUR glory alone!  Show us how to love him well, how to parent him well, Lord.  Thank you for entrusting this Precious Treasure to us.  We trust you to provide, Father.  We trust you with Lucy and her infections and ask that you would touch her, relieving her pain, even as I type.  Touch Conner's heart tonight as well, letting him feel the warmth of the love his mommy and daddy have for him, letting him know what a gift he is - showing him that he indeed is an important part of our family, God.  You are GOOD, even when we don't see it even when we don't feel it.  Thank you for answering our prayers and getting us into a specialist, Lord.  Your timing is perfect and we choose to trust you on this journey. 

In Your Holy Name I pray all of these things.