With Hope and Reckless Love

This past week has been heavy.  Actually, I've felt like the last two weeks have been from a chapter straight out of, "Alexander and the Terrible, Horrible, No Good, Very Bad Day".  Grief sickness overtook me Thursday night and once again, I couldn't sleep and felt ill from deep within my soul.  Grief hits you in waves and sometimes its extremely overwhelming.


Ellie's birthday is almost here - December 4th.  It's as if, all of a sudden, my Spirit realized all of the tough losses that have recently happened in our family.  I literally looked at the calendar and was shocked - it's almost Ellie's birthday, and then her Heaven Day on December 23rd (my Sister's birthday), and after that, of course, is Christmas.   I scrolled through Facebook while tossing and turning Thursday night (or Friday morning?) and found this gem from November 20, 2009.  Oh, My Heart!

Ellie Kate and Conner

Good things that happened this week - my Sister's missing dog came home, my Dad arrived safely from his last mission trip and I had my Rodan and Fields launch party! And now we prepare for Thanksgiving with an entire week off of school.


Another great thing - Lucy had a party at school and I was able to attend! The special-education teachers at Lucy's school brought in a Music Therapist today for the kids to enjoy in lieu of a Thanksgiving Feast!  It was absolutely precious and Lucy just loved every moment.  It's safe to say, a pink tambourine is now on Lucy's Christmas list!

Lovin' the music and rockin' the bow!

Henry's been having more and more "manic" episodes, where he stays up all night long (literally).  He's happy during these times - playful, energetic, intelligent.  His brain just can't stop, even with medication.  It's so strange, so bizzare to observe this little boy running and playing, all through the night without missing a beat.  His anger episodes have slowed down greatly and he is doing amazingly well in school.  You should see the systems his sweet teacher has set into place - letting Henry tangibly see his schedule every day.  He LOVES her so much, as well as the Teacher's Assistant, who gratefully pals around with Henry and keeps him extra safe.  I just can't say enough good things about how Our School has rallied around us and have helped Henry this year.


I often feel guilty in not posting much about Conner-Mac.  Oh, how I love this eldest boy of mine!  Conner is so easy-going and is truly such a joy.  He had a blast this last week as he and his fellow sixth-graders wrote scripts about a fundraiser the school is doing.  Their job was to convince the other kids to get involved and give.  Conner went to school dressed like an Christmas elf and gleefully delivered the fundraising message.  He didn't want to take extra clothes to school.  He wanted to wear that costume the entire day, regardless of what people thought (which is a big thing I love about him).  I must say, it was pretty hilarious seeing that little Elf ride off to school on his bike!


We have some very tough days ahead - coming up quickly. I won't lie - I'm NOT looking forward to the upcoming holidays this year, as my heart feels so raw, as if it's open flesh. Your gifts in honor of Ellie Kate have been coming in every day now, and with each package, our hearts are lifted more and more.  It's hard to believe that we will soon be there at OU Children's Hospital, delivering the gifts you have given, passing them out in Ellie Kate's honor.  I just don't have the right words, Friends.  I'm so grateful and I pray that the Father will allow you to somehow feel and know how special your remembering, your efforts, your giftings have meant to us and to so many others.  Reckless Love has no boundaries! 

Gifts YOU have purchased from the Amazon Wish List!  

To show your love and support during December, we ask that you use this as your profile picture, in honor of Ellie Kate and A Month of Reckless Love (you are welcome to use this image and the one at the top of this blog post).  

There's STILL time to get your gift here before December 4th!  As a reminder, Mike and I will be delivering gifts from this Amazon Wish List in Honor of Ellie Kate as we celebrate December - The Month of Reckless Love. 

Click HERE to see the wish list on Amazon 

With Hope and Reckless Love, 
Ryan

Marathon - Time is Slipping Away

December 4th, 2005.  That was the date the marathon started, although we weren't quite aware.  We most definitely became aware of the intensity of the marathon on day four, the day Ellie Kate stopped breathing - at least the first time we saw it happen.  I didn't know how long the marathon would be, and in fact, we were told it wouldn't be long.  But Mike and I fixed our eyes on the One who brought us together; on The One who created Ellie Kate, and we jumped in and dedicated ourselves to that marathon, no matter what it might take.

I think we kept our pace pretty strong.  Sure, there were times of injury where we would stop for a while, but as Ellie Kate's parents, we never truly stopped the fire within us - that fire to push, to press, to go on, to move on, to put one foot in front of the other, no matter what sacrifice, no matter how much it hurt on ever level.  

And then, after seven long years of marathon-ing, it all STOPPED.  Ellie went to heaven and is complete and whole.  We weren't completely lost, but for me in particular, as a momma who was used to running, and pushing, and fighting, and calling, going to appointments, to IEP's, nurse visits, home health visits, fighting at the state level - all of that stopped in a way.

We had Lucy, and gratefully she was doing so very well and didn't need as much help from us to survive - at least for that time.  It was hard to change the pace - to suddenly stop.  And things immediately changed before we really rested.  Henry started having trouble.  We ALL started having a hard time, and rightfully so.


And here we are . . . TEN YEARS after we initially started that first unexpected marathon with Sweet Ellie Kate, the one that ONLY JESUS had prepared us for, and I am oh-so tired.  Attempts to start new things, to take better care of myself;  attempts for Mike and I to focus on our marriage healing, for us to focus on our children, on our finances.  I can tell  you folks, even THREE years after EK's death, I still feel like all of these things are in a bag, along with giant boulders, and I'm trying to move them with a stationary bike.  I don't think we are alone.  I KNOW WE AREN'T ALONE.  It's like this for so many families as they learn to "do life" after earthly loss.

Please add this as your facebook profile pic from now through December, in honor of Ellie Kate

That brings me once again to "In Honor of Ellie Kate - A Month of Reckless Love".  

Do you know . . .  could I ever begin to tell you?  Are there words enough to convey the importance of your involvement, the preciousness that comes in knowing you say her name during these few months?  I don't think you will ever know, this side of heaven, or unless you too lose someone so very dear to you - bone of your bone and flesh of your flesh.

Today is November 17th, and I am INCREDIBLY grateful to those who have SO graciously given, who have already checked off the Amazon Reckless Love Wish List for OU Children's.  We are a mere few weeks away and I have FIVE items.  FIVE items is WONDERFUL, because that will mean that FIVE children will receive a special gift!  But, we long to do so much MORE, as we have in the past, with over 60 just last year alone (and over 150 the year before that).  Would you consider purchasing something off our of Amazon Wish List 2015?

 Gifts 2015

We also did something new this year - PARENT PACKETS!!  Because of the loving heart of my dear Sister, Laura Franklin White, there are 41 parent pouches going out to local hospitals in Ellie's name - 31 of them going to OU Children's on December 4th, Ellie Kate's birthday!  THANK YOU to all who participated in that part of Ellie's Month of Reckless Love this year!  What a vital, life-giving way to support the entire family as they sit in the hospital with their sweet one this Holiday Season!

If you have any questions or need any other information, please let me know.  For more information on "In Honor of Ellie Kate - A Month of Reckless Love", please visit our past blog post here: Month of Reckless Love Post 2015

To see our amazon wish list for the event, please consider visiting the site.  Every little gift helps!
Amazon wish list.

Thank you for honoring Our Girl, for remembering her and for doing something in her honor. We love you so much.  

Ryan

Peace, Sorrow and Ellie's Month of Reckless Love

Peace and Sorrow are so beautifully intertwined within the life of the Believer.  We live in a fallen world and yet have the hope of a perfect eternity of peace with Christ.  Sometimes it's a solemn dance and sometimes it's a rowdy one.  The month of November reminds me that "Ellie's Month" is right around the corner - that peaceful, sorrowful month of December.  

I've recently been reading a bit about Martin Luther and his wife Katie.  I found out they lost two daughters - Elisabeth and Magdalena.  Elisabeth died early in infancy and Magdalena died around the age of 14.  Luther lovingly called Magdalena, "Lenchen", which means "light" (same meaning as Lucy).  I've read in several  places, that upon Lenchen's impending death, Luther said, "O God, I love her so, but thy will be done.”  It's been written, "Luther reproached himself because God had blessed him . . . and yet he could not find it in his heart to give God thanks. Katie stood off, overcome by grief; and Luther held the child in his arms as she passed on. When she was laid away, he said, 'Du liebes Lenchen, you will rise and shine like the stars and the sun. How strange it is to know that she is at peace and all is well, and yet to be so sorrowful!'" - The Gospel Coalition

Magdalena died after a "long illness", and in a letter to one of his dear friends, Luther wrote the following, ". . . my Dear Daughter Magdalena has been reborn into Christ's eternal kingdom.  I and my wife should joyfully give thanks for such a felicitous departure and blessed end by which Magdalena escaped the power of the flesh, the world . . . yet the force or our natural love is so great that we are unable to do this without crying and grieving in our hearts, or even without experiencing death ourselves.  The features, the words and the movements of the living and dying daughter remain deeply engraved in our hearts.  Even the death of Christ . . . is unable to take this all away as it should.  You, therefore, give thanks to God in our stead.  For indeed, God did a great work of grace when He glorified our flesh in this way.  Magdalena had a mild and lovely disposition and was loved by all. . . God grant me and all my loved ones and all my friends such a death - or rather, such a life." (emphasis mine)

Oh, you guys!  First of all, this is a side of Martin Luther that I had never seen before.  Secondly, he so perfectly pens our feelings into words.  It is extremely true in our lives, in our journey, that YOU have given thanks to God for Ellie Kate's life and ultimate healing when we haven't had the strength to.  As Luther invited his friend to join in the mourning, celebration and remembrance of his precious girl, WE have invited YOU into our journey and you have faithfully been there.  

Once again, we are asking you to join us in remembering and celebrating Ellie Kate's life with "In Honor of Ellie Kate - the Month of Reckless Love".  This special event will take place the entire month of December, with different ways to participate, celebrate and honor EK while recklessly loving the world around you.  

What do we mean by "Reckless Love"?  What we mean is this (and it's very much a 'Mike and Ryan definition'):  

• "Love" should be a verb, an action; it's not just a feeling, because our feelings pass and fail us.  

• "Reckless" means to be unconcerned with the consequences of an action; to test the limits and not worry about what might happen, be it good or bad.  

Reckless Love is taking intentional action in order to benefit the life of another

without worrying about the consequences. 

It's stepping up and out and loving, even if it feels awkward, 

even if it causes a stir in your household, community or place of work. 

Ellie Kate taught US to love others with reckless abandon - to forget about the rules and the limits or how it "should" be done.  Her life taught us to love who the world sees as unlovely.  She taught us to give even when we didn't have enough. She taught us to serve even when it hurt, even when it was costly in time, energy, etc.  

Ellie Kate to love in a reckless way - the very same way that Jesus loves each and every person on earth.  Our sincere prayer is that your lifestyle will become one of Reckless Love, and that in some small way, our Ellie Kate opens you up to loving, giving and serving like you never thought possible. 

We have a Facebook page dedicated to "A Month of Reckless Love", and my hope is that you will freely post ways you are loving and serving others with reckless abandon.  Posting won't be a boastful thing; it will be an encouraging thing to Mike and I and to our entire family.  Your posting will also encourage others, and I pray it will spark those who see it to move and do. 

We encourage you to celebrate Ellie Kate by participating in the following ways: 

1. Purchase items on our Amazon Reckless Love Wish List: All interactive toys, movies and books donated will be given to ill children at OU Children's Hospital on December 4th, Ellie's birthday (Ellie spent most of her birthdays, including her last earthly one, there at OU).  

  Parent Packets are a new thing we are adding this year that will also be delivered on the      night of Ellie's birthday.  These packets will be full of things that parents need during their   stay, especially since many times their stays are unexpected.  The packets will make them      feel loved and will bring some comfort during an intense and emotionally taxing time.  The    Parent Packet will include Ellie Kate's story as well.  
   For more info on Parent Packets:
https://www.facebook.com/groups/719323738169061/?fref=ts

  
2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate (see the definitions and explanations above).

3. December 4th: 

• For Ellie Kate's birthday, we ask that you love, serve, encourage, or give to a family with a special-needs child OR to a family who has a lost a child due to any circumstance.  Bring a meal, bake a cake, send a balloon or flowers - anything uplifting to let the family know that they are loved and not forgotten.
• Share Ellie's story with someone you come in contact with.  Post and let us know about your encounter. 
• Share your favorite Ellie Kate memory or story on our FB page

Sissy's 7th Birthday at OU

4. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.

As Ellie Kate's Mommy, I could never put into words just how very much your participation in this celebration truly means.  Thank you in advance for once again remembering and recklessly loving in honor of Elizabeth Kathleen McLaughlin.

Ryan

ENERGY and Answers

Energy - I sure wish I had the energy to blog more often, but these days . . . these days, it's been hard to even lift a finger without wearing myself out.  You may have felt it in the words of my FB posts, messages, texts, emails and I'm sure you've felt it in my recent blog posts.


I have been so weary.  Physically weary, to the bone.  Then I had this rash pop up that was super painful.  It was a nerve-type rash and I went into the doctor to get it checked out.  I found out that my levels were all over the place, and my B12 was extremely low as was my thyroid.  Both of these things (EACH of these things, really) can cause extreme exhaustion, lack of energy, weight gain, mood changes, nerve trouble, and so much more.  I truly am grateful to have a reason behind the way I've been feeling!  There is a reason why I've felt more forgetful, sometimes confused even - it all comes back to these levels.  There is a plan in place for my treatment and hopefully I will get some energy back soon.  I NEED it so that I can be who my family needs me to be.


Henry had all-day testing at OU Children's this week, in the Psychiatry Dept.  It was intense for him, and at one point he had to stop for a quick nap (which they gratefully obliged to).  I felt like I was testing too, filling out paperwork on Henry for a few hours myself.  Mike and I also were able to meet with one of the heads of the department who is leading Henry's studies.  It was wonderful to be able to ask questions so freely, to gain wisdom from someone who knows so much, who's seen so much through the years.  The doctor was a wealth of information and is leading us to better specialists and therapists here in Oklahoma City.  Would you pray that we would be able to get into these doctors and therapists quickly?  


The main goal of the testing is that these professionals will come up with a plan for home and for school, among other things.  These goals will be based off of the test results and the time they spent talking with and observing Henry.  We were just so impressed, and I'm excited to get the results back so we can plans to put into place!


Yesterday I met with Henry's teachers and counselor.  We meet quarterly (per their request) so they can stay on top of things and make sure they know everything that's going on with Henry at home, with doctors, with therapists, etc.  Isn't that a wonderful thing?!  We are just SO grateful for our school and for all of these wonderful people who are there for Henry, cheering him on!  He's doing better than ever in school, excelling in every single thing.  He's an Accelerated Reader now and he's really developing and maintaining relationships on his own!  It's so special and encouraging to watch.  Mike and I are just thrilled at the progress being made at school and the way Henry thrives while at school.


Although Henry is thriving in the classroom, he still has a hard time at home.  This week alone, I've been hit and spat upon, among other things.  Henry takes his anger, his strong and negative feelings, all out on me.  I'm his safety net, and as much as I am grateful for that, it WEARS on me.  In all honesty, who wants to hear, "I hate you" or "I wish you never had me", "I wish you never met Dad", and on and on and on???  I hear it every single day, and it wears my spirit down and now it's wearing my body down - literally.


One BIG thing we learned from the psychiatrist this week was that sometimes, Henry truly cannot help his outbursts because they ARE neurological misfires and imbalances.  The doctor explained it so well, in ways we understood.  You don't just assume that your child literally can't control their bad/destructive behavior when they are 7, but when they have trauma or when they have something like PANDAS, that's very much the case.  When this happens, you CANNOT discipline it.  WHAT?!  Nope, you can't discipline the action that is out of their control, just like you can't discipline someone for having tourettes or tics, or even seizures (which was the example the doctor gave us).  Henry's outbursts are very much like a seizures - uncontrollable.  


After speaking with the psychiatrist and  he counselor at school, AND on the same day, receiving information from our own doctor . . . we are now looking into trauma therapy for our entire family.  Every single person has been through trauma.  We've been through some trauma together as a family and we have an opportunity to work on it together as a family as well.  This type of therapy would be wonderful for all of us and would quite possibly be best for Conner.  Conner is our silent sufferer - our laid-back Bubba who rolls with the punches, for the most part.  His heart hurts, and those hurts come out every once-in-a-while.  Just like we help Lucy with HER hurts and just like we help Henry with HIS hurts . . . we need and want to help Conner with his, even if they aren't as loud as those of his brother and sister.  


Leaving on Happier Notes . . . 

Lucy's seizures have been very controlled this week, after the increase we had last Friday!  Although she is having screaming fits (that last for hours on end), she is tolerating her feeds and has successfully gone back to school this week!

Conner, the now 12 year old, is loving like and school and anything social.  He especially loves going up to the park after school with his friends everyday after school.  He's still a little boy, and I'm enjoying every last moment of that.  He is starting to like girls, sit by girls, go out of his way to talk to girls, but he still holds my hand and wants me to snuggle him.  He is a treasure to my heart.  

Henry is excelling in soccer and is thriving with the relationships being made there.  The energy he spends there helps him in the classroom and at home.  The confidence he gains there is priceless and it has changed him for the better!  

Mike continues to work ever-so-hard for our family and we are still amazingly grateful for his company and the graciousness they've shown us through our recent journeys.  I don't know how Mike works so hard during the day, then comes home to clean, fold laundry and work the night shift with Lucy.  He amazes me each and every day.  I'm beyond grateful for this man.  

By the Way . . . I can HARDLY imagine that it's ALMOST TIME for Ellie Kate's MONTH OF RECKLESS LOVE!  Starting the first of November, I will have more instructions and an Amazon Wish List for the books and sensory toys we hope to donate to OU Children's Hospital in honor of Miss Ellie Kate again this December 4th, which would be Ellie's 10th birthday.  PLEASE, please, please be watching for ways to take part and get involved and we plan to honor our Daughter and recklessly love those children at OU Children's Hospital!  


Thanks for your prayers, My Friends.  Thank you for your continued encouragement.  I run to the mailbox each day in hopes of another encouraging card because they lift my spirits so much.  I'm telling you, God uses YOU to life our hearts in so many ways.  

Here's to more energy and more blog posts! 
Ryan

Clear Tunnel

Life has truly felt like a tunnel the last few days.  I take that back - it feels like that tube at Chuck-E-Cheese - the one you go into when it's your birthday. You walk in and the door is closed and the wind is turned on.  It's a clear tunnel so everyone around you can see you looking crazy, wild and silly - your friends AND strangers! Your hair goes everywhere. They make you wear these goggles which make it hard to see.  You don't know where to look.  You are supposed to be grabbing that "money", but it's all swirling around you so fast that it's hard to even focus.  Yep, that's EXACTLY how it's been . . . 


We've been trying to settle back into routine, and the boys really seem to be thriving off of it.  Heck, I AM thriving off it!  I love having routine and meal times together, and we've been able to do that since we've been home from the hospital.  I have to say - we've been eating amazingly well because of the graciousness of precious friends!  All three of my boys will be spoiled rotten once we get through that last frozen meal that was lovingly prepared for us (I'm afraid I let them down in the cooking department).  

Lu Lu enjoyed a shopping with Mommy and Nunnie on Thursday!

Cheering Henry on at the Assembly 

Henry had one night this week that was really hard we finally attributed it to a loose tooth (what is it with Henry and all of his tooth issues/pain?!).  Thankfully, I pulled that tooth on out and he was acting and feeling better.  He is excelling in school, you guys!  He's even reading A.R. books now and received an award at school on Friday!  

Henry's Assembly 

Oh, Friday!  Lucy looked like she was sleeping during the entire assembly, which seemed odd to me, seeing how loud it was.  After checking, it was clear that she was in seizure - the new type of seizure she's been having where she looks like she is sleeping with some slight twitches in her hands and feet.  I rushed her back to the school office where they quickly got us into an office for privacy (the school handled it so well).  Both Grandmothers were there, so they calmly followed my instructions.  We called 911 and had Lucy taken to OU.  She was out the entire ambulance ride.  

Still "out" during the EEG

Always a Daddy's Girl

They of course took us straight to a room, and it turned out that our favorite neurologist (Lucy and Henry's current neurologist) just "happened" to be in the ER room next to us.  This never happens, ya'll - it was absolutely from the Lord.  The doctor immediately came in and was able to evaluate Lucy and order tests right then and there.  It was comforting to have our OWN neurologist laying eyes on Lu Lu as she was in this unresponsive episode.  


They did bloodwork, an EEG and a CT scan.  All that can be explained is that NKH is an ugly disorder that affects your brain, and how it misfires today may not be how it misfires tomorrow.  These episodes are absolutely neurologic and could be NKH progressing in Lucy's body.  This all could be happening too because she is still healing from ecoli that was in her port and her blood stream.  Mike and I really feel that it is a combination of both things.  


Unfortunately, with seizures and genetic disorders and things that can progress, there's just not a whole lot you can do.  Your choices are limited.  But, we are doing the best thing for Lucy right now, which is having her seen again this week by a few doctors and by increasing some of her anti-seizure medications.  


Conner played a fantastic soccer game on this fall Saturday, and Lucy laughed and giggled throughout the day, which was a real treat.  Henry had a good day too, but he seems to be manic again tonight for some reason and we are praying that he will somehow fall asleep (and SOON!).  


Back to that tube/tunnel . . . 

I know that, in our case, the tunnel is clear because we invite others in to share our journey.  We want to be open and honest, REAL about the ups and the downs that come with losing a child and with raising a child(ren) with special-needs.  We share freely and openly because the Lord has called us to, although I assure you, there are many things we keep to ourselves and to our family as well.  

Living in a clear tunnel isn't for everyone, and I completely get that.  I also know that it may sound silly when I complain about it when I'm blogging here for all to see!  Thank you for your grace as I find the balance of sharing my heart in journal form, passing on our story so that others know they aren't alone, and somehow meeting my deep desire to see the Lord glorified in our roller-coaster journey.  

Scripture, along with encouragement from others, has really helped me over these tough weeks. I will leave you with a verse that a Dear Friend recently reminded me of, and I think it's the perfect verse if you are like me and feel like you are in that tube/tunnel:

Isaiah 46:4

"I am He who will strengthen you; I will sustain you and I will rescue you".  

Can It Be?

We are HOME.  HOME!  It's hard to believe that, after about two weeks of intense medical treatment, Lucy is now resting in her own bed (and she's loving it, by the way).  I'm still trying to wrap my mind around the events that have taken place but the main thing is, Lucy's infection is so much better and we are all now enjoying the comforts of home. I can say that we certainly do not take those comforts for granted.  


Lucy's having a very hard time, even though we are home.  She is of course, very stable but she is still on sensory overload.  Every movement bothers her, and the loud noises send her over the top, causing her to get hysterical.  We are trying to tip-toe around the house, but life has noises and we can't be silent all the time.  Hopefully, as time goes on, her little nerves will settle and she will better acclimate to our home environment.


We'd love prayer for Lucy's pain.  We think part of Lucy's agitation is from her pain that we can't control.  She was on heavy pain meds in the hospital, which she received through her IV port.  Getting pain meds through her belly isn't the same as getting them through the IV because they don't work as quickly.  Lucy has screamed on and off the entire time she's been home, and it's breaking our hearts.


Also, Lucy is still having diarrhea and has vomited since being home.  Her little body is so tired and she can't stay awake for long periods of time.  I can tell she's happy to be home, but she can't stay awake long enough to really enjoy it!  She isn't lethargic and obviously isn't at the point where we feel she needs to go back to the hospital.  We just want the Lord to keep her from getting to that point.  We want to stay at home.


Whew.  We are tired.  We are weary.  We are grateful for YOU and for your love for us.  Thank you so much and thank you too for your patience with us as we try to re-enter life together.



With Hope,
Ryan

Hope

I'm sitting by a sleeping Lucy, all cuddled up in her tumbleform seat here in the hospital room - the seat which keeps her secure and safe from pulling her tubes and wires.  She adores this seat and feels nice and snug - tight even - and she likes it that way.  Sensory issues mess with your body and mind, so those suffering with them like to have pressure so that they feel enclosed.  It brings security and makes them feel like their world isn't so out-of-control.  That's why she loves the weighted blanket too, which has been a life-saver here in the hospital since Lucy has been on senor overload!  This precious blanket belonged to my Dear Friend's daughter, Kelsey.  Kelsey met Jesus last year and her mommy gave this great blanket to Lu Lu.  Little did we know how important this blanket would become!  It is quite the treasure and allows Lucy to rest and sleep peacefully, just as she is now. 




Lucy is doing incredibly well, and although she still has pain and is trying to get caught back up with her feeding schedule, we couldn't be happier with how things have gone.  Ecoli can be incredibly dangerous, deadly even.  We've heard of another little patient here at OU who has had ecoli, and her kidneys shut down because of it (and she doesn't have an underlying condition like Lucy).  She's now on dialysis and needs our prayers.  That so easily could have been Lucy, You Guys!!  God's mercy is great and we appreciate the many prayers around the world for Lucy's healing.  The Father heard our cries, I have no doubt.  I am incredibly grateful, and in awe, that Lucy has been spared from so much. 




Last Monday was very grim.  Most of last week was, really.  We were looking at a very long stay, possibly even another month, and now it looks like we will go home this week!  It's hard to even wrap my mind around - only a 2 week stay for this illness.  God has moved so quickly throughout Lucy's body; it's responded so well to treatment.  It was absolutely His timing to have us here, in the hospital room, when her fever started so that cultures could be taken and antibiotics could be administered from the very beginning.  If we were at home and had tried to care for the fever there for even a little while, I don't know what the outcome would have been.  I don't have to even think about that now, though because my Little Girl will soon be coming home to her own bed, her own room, her own house. 




Would you continue to pray that Lucy will catch up with her feedings and that she will have ease of pain?  We want to be able to control it at home.  Also, she will be on IV antibiotics at home for a while, so I will be learning how to administer those.  I would love prayer as I learn new nursing skills, especially since I am not a nurse:).  We also will be able to give Lucy IV fluids (through her port) at home, which is another huge blessing.  They are working hard to set those things up even now - I can hardly believe it!




This is Conner's birthday week, Ya'll!  He will be 12 on Friday!!  Please pray that he feels special this week.  He is so often looked over because he is just such an easy-going, good, well-mannered guy.  He is easy to parent, to be honest.  Nevertheless, I know he too longs for attention and we want to give it to him, especially this week!  He has a big party on Saturday, so we covet your prayers that nothing interferes with that. 




Henry too is having a hard time and just needs us home.  He had his feelings deeply hurt by some neighborhood kids last night, and hot tears were streaming down his face.  He couldn't put his feelings into words for me.  He couldn't explain to me what happened, but I know he is hurting and he is having a hard time relating to other kids.  Would you pray for his heart and mind to settle? 



Getting back into life at home is always hard as we aren't used to all being together and we aren't used to the old routine of life.  It's a gradual thing, learning to be together again as a family, and we need extra grace and patience, especially since we will be in charge of Lucy's care at home (and it will entail more than the usual).  Would you pray for a smooth transition? 




Oh, I am just so excited to hopefully be home this week, barring no unforeseen issues with Miss Lucy!  Thank you for your continued prayer and encouragement.  We've been low this go-around and have held onto every word, ever text, ever note, every message that you have sent.  Thank you in advance, for having grace for us as we slowly re-enter life outside the hospital (hopefully this week!).




With Hope,
Ryan