Morning Has Broken!

My heart is overcome with gratefulness, spilling over with joy!  No, we did not win the lottery or fall into some lofty inheritance.   Mercy who has brought me to this place, allowing heavy, dark concrete to fall off my body, mind and spirit at this moment in time.  This joy isn't because of anything I've done, but I am more grateful for these moments than years of "thank you's" and praises could ever express!  

 

The Spirit speaks to me so often through song. Some may remember the old ballad of Cat Stevens' about a breathtaking morning, the peace so tangible, it dances like a mist over the meadow; the delicate birds begin to sing the songs God placed inside them. 

"Morning has broken like the first morning

Blackbird has spoken like the first bird

Praise for the singing

Praise for the morning

Praise for them springing fresh from the world" 

- Cat Stevens 

For the last thirteen years of our roller-coaster Journey, one desperate song has continually played in my mind, body and spirit.  God placed words in my mouth at the beginning, when Ellie Kate was in the PICU as a newborn, as the doctors told us she would likely die that very night.  I had no words - groanings too deep for words.  Some of you know exactly what I mean.   I only remember the chorus, but maybe that's all I'm supposed to have stamped upon my heart . . .  

"Oh, Lord Jesus, Come quickly to me!" 

 

 

But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.

Romans 8:25-27

At times in recent years, I've felt empty and broken, as if a piece of me were missing - a piece I needed to keep going.  During the trials and heartaches of this life, every single one of those feelings is normal.  Every feeling is okay to have, to FEEL.  Don't be ashamed of those feelings - there is nothing to be ashamed of, Dear One.  You are human; God made you with feelings and created you in a way to express them. 

 

There are no magic words, no specific Christian book to read or Study to go through; your heart and mind won't change when you hope or "wish" it away.  No, it comes in the Lord's timing.  He may give you this joy and freedom DURING a struggle, or He may do so in between the seemingly constant trials.  All we can do, all we MUST do as Believers, is SURRENDER - surrender over and over, our hearts always bent before God. 

 

Your Father WILL sweep in and show Himself in your life, even in the midst of the heaviest trial.  He is, "Mighty to save", continually moving mountains on behalf of His beloved Children (even if we don't see them).  

 

 "The Lord your God is in your midst, a mighty one who will save; 

he will rejoice over you with gladness; he will quiet you by his love; 

he will exult over you with loud singing".

Zephaniah 3:17

 

Our God continually PROMISES to make ALL things work out for YOUR GOOD (and the good of your children, spouse, family), and for HIS GLORY.  As followers of Christ, what more could we want in this life than for God to be glorified through our lives and the lives of our children, AND for Christ to get the glory for everything?!? 

 For I know the plans I have for you, declares the Lord, plans for welfare 

and not for evil, to give you a future and a hope.

Jeremiah 29:11 (ESV)

 

This is God’s Word on the subject: “As soon as Babylon’s seventy years are up and not a day before, 

I’ll show up and take care of you as I promised and bring you back home. 

I know what I’m doing. 

I have it all planned out—plans to take care of you, not abandon you, 

plans to give you the future you hope for.

Jeremiah 29:11 (MSG)

 
Oh, Father!  Thank you for this glimpse of happiness, joy and sweet expectation!  Thank you for relieving my heavy burdens, even if only for a moment!  How grateful I am to breathe so lightly, to rest so deeply and freely, knowing I can trust YOU with everything.  Life will always be difficult.  I will continue to live in survival mode because of our circumstances, however, YOU are there.  I find hope and peace, knowing you are using all of this for the good of my children, my family.  How humbled I am that YOU would be glorified in me, a broken and sinful human.  When I'm next in the darkness; if the heaviness of these trials once again dims my spirit, may I remember the feather-weight of these days.  

 

I Surrender, 

Ryan

 

CONNER is enjoying his freshman year at Westmoore and is working hard, playing on the soccer team.  High school is a whole new world, but we are incredibly proud of the young man Conner continues to be - tender-hearted, affectionate, witty, helpful with his sisters and patient with his brother. His life brings peace, balance and LAUGHTER to our Home.  I'm so grateful for Conner (or, 'Boy' as Bowen calls him). 

BIG grin from Henry - looking up to Big Bub

 

HENRY has been initiating his schoolwork and chores, showing more and more of the "Real Henry" we know and have missed.  He's growing more responsible and even more affectionate, hanging on to every verbal affirmation that comes his way.  Henry has changed for the BETTER since his IVIG treatment last fall, and we've seen a HUGE difference in his life.  His life is more calm and steady, without as many highs and lows.  He is able to eat and has gained back the weight lost last summer due to PANDAS symptoms.  Henry's playing soccer again this year and has played every game in it's entirety (without taking a mental break , quick walk to calm his mind, not even a break for reassurance from me!  This is HUGE.  I hope to update more on Henry soon.  In the meantime, THANK YOU for praying for our Sweet Boy.  Thank you for giving, helping to provide a way for him to go to D.C., paying for his IVIG treatment - a treatment which has clearly changed his little life for the better! 

Look at the smiles on those faces!

 

BOWEN is a light and complete JOY!  Speaking in sentences now, we take great delight in hearing her speak, which happens to be quite often.  Bowie is athletic and is now obsessed with our "mamboleen" (trampoline).  She's small for her age, which just adds to the fun for me, as I want her to stay a baby as long as possible:).  Bowie Jane is just as strong-willed as our other kids, and has recently said, "Mommy, YOU MUST obey me!", "Mommy, PLEASE, no talk, no sing (I like to hum and sing around the house)".  She's graduated from "Bubba" to "Enry" (Henry), although she still goes back and forth on those.  My parent's dog is named, "Duggah" (Sugar) and Lucy's name is not only "Sissy", but also, "Juicy" (Lucy).  She enjoys singing, "Lucy, My Belle" with me - a favorite of "Juicy's", which PawPaw Stan would sing to her often.  Mike and I can't imagine life without Bow, and the boys often say the same.  

Joyous Bowen!

 

LUCY is growing, which is wonderful!  A year ago at this time, Lucy was so still ill and thin; she barely had energy to move at all on her own, something she loves to do.  Now, she's weighing heavier than ever, which is a MIGHTY blessing!!  Her energy level amazes us, although she still literally falls asleep anytime, in any place, in any position (she's a flexible pretzel due to the affect NKH has on her muscle tone).  She's moving more and more on her own, pulling herself up to her knees.  We haven't seen Lucy this happy and have not heard her giggle this much, since she was an infant.  It is a GIFT we don't take for granted.  

Happy Day at the Park!

 

Mike and I have counted approximately 30 urinary tract infections, which Lucy has had in her seven short years on earth.  This is heartbreaking to us and, through many tests over the last several years, we know Lucy retains her urine and the retaining is only worsening, instead of getting better.  The medications we've tried have not worked.  Lucy's still often in pain and at times, in her own way, can show/tell us what's hurting.  I know how excruciatingly painful my Intercystial Cystitis can be, and I fully believe that is how Lucy feels, likely even worse.  I can't imagine a child in such pain.

 

Even though Lucy is on Palliative Care, we have decided, with her specialists, it would be best to place a permanent catheter.  Most of the time, surgery wouldn't be done on someone on Hospice or Palliative Care, but we all agree this step is a MUST for keeping Lucy as pain-free and happy as possible. The catheter will allow us to drain Lucy's urine as needed, preventing retention, which in turn, helps to prevent bacteria growth, which in turn, eliminates or limits the amount of infections, which in turn, makes a happy and healthy Lucy Belle!  She will have to go "under" and be placed on a ventilator during the surgery, something we are extremely nervous about, as there is no assurance Lucy will wake up from that state.  We've never chartered this territory before; EK never had bladder issues, so it will be a new learning experience for us all.  Surgery is set for the end of April.  

Thank you for praying.  Thank you for loving.  Thank you for supporting us, in so many ways. We'll keep you posted.

Kisses to Last a Lifetime

The true question which fills my heart and mind is this: 

How many more kisses will I get to give 

before Lucy takes her last breath on earth? 

How long do I have to study her face, her hands, 

those most perfect lips and movie-star eyelashes?  

When will be my last time to see and kiss on those 

 cute little earlobes and dimpled hands!

 I don't have enough time left on earth 

to give My Lucy Belle ALL of the millions of 

kisses I truly long to give her in this lifetime. 

"Time" is a true thief; it steals the most precious of things, and I know you can relate.  

I find comfort in this:  God's infallible Word,  offers Eternal Life awaiting ALL children, all of those with profound disabilities AND all of those who've surrendered their life to Christ, asking Him to the be the King and Lord of their life!  

Even in knowing Lucy will soon meet Jesus and come face to face again with Ellie Kate (can you even begin to imagine what that will be like?!), My human, broken and motherly-heart still wonders and wails in so many ways.  Even as a Believer who knows where I will spend eternity, who KNOWS where my Daughters will spend eternity and that they will be completed, perfect, whole, without any pain, without any sickness, without any fear or tears or hunger or confusion . . . even still my heart cries out . . . 

Would you give me MORE and MORE and MORE times with Lucy

and special opportunities to hold her, love on her and sing to her, 

telling her stories about Heaven?

Will you go before us and provide in supernatural ways?

Will you comfort Lucy even now, preparing her heart, body and mind - her Most Precious Spirit for what YOU have in store, Lord?  

We see the signs and know them too well.  We told Lucy we would fight for her life as long as her body told us to keep fighting but now, just as Ellie Kate's body did, Lucy's is showing us how tired it is and how incapable it is of working correctly.  Hardly any wet diapers.  

No bowel movements, even with Senna (laxative given twice daily) plus daily enemas).  Almost constant state of sleep.  Twitching and seizing and muscles moving in a bizare fashion.  Her food and medicine doesn't go through her belly well and isn't absorbed.  Still, she screams and cries, even with pain medication.  Still, she screams when she even sees me bringing a syringe of formula over to her because she's anticipating the hurt.  

How much longer, Oh Lord will the suffering endure?  
Will you take it out of our hands?  

 Truly, My HOPE is in YOU, Lord from where my Help comes from!  
You reign in Heaven and on Earth and I am so unworthy of your goodness, your mercy, your provision, 
and your gentle hand with Lucy and with the other children.  

Please continue your mercy, Most Holy God.  Please continue to pour yourself out to us in this busy time, this confusing time, 
this space in time which is hard to understand - 
a space in time which I thought would be so far away, God. 
 I don't know how it can be, but I CHOOSE to trust you.  
I CHOOSE to take your cup and drink it. 
Not MY Will but YOURS be done!

 Oh, how I want to kiss Lucy's sweet, tiny feet (which are almost as big as Bowen's)!  I want to kiss the nape of her neck a million times over, to get a little kiss and breathe in her heavenly scent.  I want to kiss every dimple in her hand and then do it again a thousand times over! 

Those perched lips - perfectly shaped and perfectly pink when all is well - I want to kiss them a trillion time over again and put Lucy's "make-up" on her again and again until the dryness is gone.

This life is full of things we just don't understand and sometimes we will never understand what happens to us, through us, because of us.  Tonight I find solace in knowing there is NOTHING God does not allow - there is nothing that can be done without Him knowing and approving, just as we've learned from Job.  

And 

Tonight, I also find solace in His Word - 

the ONLY true and trustworthy thing in this life . . . 

Isaiah 55:8-9

8 This plan of mine is not what you would work out, neither are my thoughts the same as yours! 9 For just as the heavens are higher than the earth, so are my ways higher than yours, and my thoughts than yours.

Isaiah 54:10-14 

10 For even if the mountains walk away and the hills fall to pieces, My love won't walk away from you, my covenant commitment of peace won't fall apart." The God who has compassion on you says so.

11 "Afflicted city, storm-battered, unpitied: I'm about to rebuild you with stones of turquoise, Lay your foundations with sapphires, 

12construct your towers with rubies, Your gates with jewels, and all your walls with precious stones. 

13 All your children will have God for their teacher - what a mentor for your children! 

14 You'll be built solid, grounded in righteousness, far from any trouble - nothing to fear! far from terror - it won't even come close!

Care Calendar:  practical ways to assist our family

Helping Hands account: financial support

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!

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

Oh, What A Ride!

We've often compared the life of a special-needs parent to that of an intense roller-coaster.  Maybe that's just true for everyone.  But I have to say, those special-needs parents and those dealing with serious illness in their families, have a lot more of those violent turns and drops than most.  

Yesterday was one of those days where I literally felt like I was jolted back and forth and spun around and upside-down.  We were in Edmond, Deer Creek, Bethany (twice), and Moore. I had two extremely important doctor appointments that had to be done yesterday a midst the chaos and unfortunately, they couldn't be postponed.  Lucy was very sick with her RSV but we had to take her with us to Henry's surgery.  We ended it late last night with a visit from one of our special home health nurses, who delivered some equipment for Lucy.  IT.WAS.WILD.

Thursday night was incredibly rough for Lucy.  Her 02 levels went down many times during the night because of her RSV.  We had been giving her breathing treatments, and the suction machine, along with all of the other tricks we have to help her, but her wheezing was getting worse.  Thankfully, the Lord had it so that our most detailed nurse was there overnight and she stayed by Lucy's side the entire time.

It was a tough situation.  If Lucy was in need of critical treatment, then we would have taken her to the hospital.  But, we HAD to help Henry and allow him to have his infected tooth removed in order to help his PANDAS.  So, while we waited for our oxygen and pulse-ox from home health, I was able to pick up oxygen from an amazing Hope Link mom who was eager to help in our time of need (I LOVE our Hope Link 'village').  We had everything that the hospital would have used to care for Lucy, so we loaded it all up and headed to the surgery center for Henry Mac.

Lucy was in the waiting room with Mike, on oxygen, suction machine being used, pulse-ox attached (we were quite the spectacle, ya'll).  I was back with Henry, who was on sensory overload.  PANDAS causes sensory issues, heightened senses, essentially.  Henry felt threatened and super vulnerable. He hates taking liquid meds because of how they "feel" to him, but bless his heart, he did try with the liquid versed (after LOTS of coercing and um, begging and bribing).  He screamed when it went into his mouth and up it came, all over the floor.  He told me it made his tongue feel like it was on fire.  I felt so horrible for him, and so did the sweet nurse.  She was so apologetic and empathetic; we couldn't have asked for a better person to help with Henry.

Since Henry couldn't take the versed, and since it set him off into some bad behavior, the anesthesiologist had to get creative.  He, along with a team of nurses, had to hold Henry down and give him a shot to calm him down.  It just had to be done to get him back to the operating room.  I had to remind myself that this was something that HAD to be done.  He had an infection that was making his brain misfire, and we had to take that infected tooth out.  Good thing too, because the doctor said that the tooth was infected all the way to the root, and that there was a huge pus-pocket in Henry's mouth, which I didn't see.  The doctor couldn't believe that the tooth hadn't caused Henry to excruciating pain and hadn't caused him to be sicker than he was.  Thank you, Lord for letting us get that tooth out!!

Once we got home and I was on my own, Lucy needed a breathing treatment and Henry started vomiting.  I was holding her down, desperately trying get the nebulizer near her mouth and Henry was wondering around the backyard in a drug-induced stooper.  Guys, really and truly, all I could do was laugh!  At least it was a beautiful day, right?!  The sun was shining.  We had made it through surgery and the tooth was out.  And we were home and had oxygen.  Conner was almost home from school.  Life is good.  LIFE. IS. GOOD.

It's a WILD ride!  You just gotta smile! 

Although there were some unexpected twists and turns with the doctor's office and nursing agency, and even though I had to be a momma-bear on behalf of Lu Lu Belle, and even though we had to stay up late when we hoped to go to bed super early because we were super tired . . .  God took care of us.  He had those roller coaster seat belts nice and tight, keeping us safe and sound.  And, when the day was done, Mike and I were happy.  Happy to be home and not in the hospital.  Happy to have the equipment that Lucy needed.  Happy that Henry's surgery was over and done.  Happy that we were together and that we survived.  

And you know what else made me super happy?  My Sweet Conner Mac, my eldest son, who gave a special valentine to a special girl for the first time yesterday at school.  And he "dressed up" and worked on his hair and excitedly gave that hand-picked gift (candy and a minecraft book, because 'that's what she likes, mom') to this cute little girl who now shares the affections of My Son.

Be still, My Heart!!

Sometimes we have to choose to be happy.  Sometimes we have to CHOOSE to enjoy the ride.  Sometimes we have choose to even STAY on that ride!  But sometimes, God gives us so much grace, that we feel happy in the craziest of circumstances, because we know that He is Sovereign and because He has it all planned out. Nothing can happen in my life, or in yours, that God doesn't allow. So we can trust him.  May the Father give you grace today, My Friend.  May you bubble over in happiness, even in the strangest of circumstances, so that He alone may be glorified.  

April 13, 2006

The last 2-3 days have been very difficult.  Elizabeth has experienced some seizures.  They are partial or focal seizures... lasting anywhere from 5-20 seconds.  That could be a reaction to some of the new medicines she is on or an advancing of her condition.  It's too difficult to tell right now.

The other difficult news has been that her veins are growing tired faster and faster from the many IV sticks.  So much so that she had to undergo surgery today to place a catheter style main-line in her chest.  This will allow her once again resume IV feedings and IV medicine.

The bigger news of all this is that we are trying to get her transferred to OU Children's Hospital.  Her specialists are there and being a college, they naturally have more specialists in all the other areas as well.  The reason why we haven't been there the entire time is, bed space.  OU Children's bed space almost always fills up faster than Baptist so we always get diverted to Baptist.

We'll keep you all updated as soon as something changes.