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.

The End is Upon Us

The end of the year is almost here and the end of Ellie's Month is upon us.  I dread this time, when the celebrations end.  The focuses are no longer on the Savior and His miraculous birth, nor on the Little Girl who is celebrated by so many near and far.  Decorations are put away and the music stops - that beautiful music played everywhere you go, preparing the way for the Baby who would save the World.  Life goes on; it moves on into another season.  The grocery stores are already stocking Valentine's gifts and decorations!  Seasons are fleeting, but I rejoice in knowing that next year, we will once again celebrate Ellie Kate with you beside us - and in some strangely mysterious and beautifully crushing way, once again, we will have the awesome privilege of celebrating Ellie Kate's life and death along with the birth of The Savior of The World.  

We do so hope that you will end Ellie's Month of Reckless Love in a strong way - giving, serving and loving in some radical way before that Ball drops and Ole' Lang Sine is sung.  Will you do me a personal favor?  Would you tell us about those last few actions of reckless love this month?  We would LOVE for you to text, email, message or post on Ellie's FB page, letting us know what doors God opened for you!  It truly would mean so much.  Many of you may not be comfortable in sharing, but I assure you - this isn't boasting; this will be encouraging to our hearts as Ellie Kate's parents.  Seeing your posts will stir others on to go out and do the same!  I cannot wait to see (and read) all the ways God moves through you and your family these last few days of December.  


Several Sweet Friends have asked about ways to give as the end of the year approaches.  All three of the things listed here are important to us, and I've provided a small explanation beside each one.  If you are still looking for ways to give and receive tax exemptions, you can do so by donating to any one of these organizations which are very dear to our hearts (you can click on the links in BLUE):    

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and ALL donations go directly to Lucy Belle and Henry's medical costs.

*Give to OKC Hope Link- - a ministry lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.

*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

Thank you for your faithfulness during this past month, Friends.  Your participation, your support, your involvement, your love, the way you've remembered so tenderly . . . it has lifted our hearts and our spirits more than I could ever share - my words could never do it justice.  We love you dearly.

With Hope,
Ryan

A Heaven-Day fit for a Princess

It's hard to believe that it's been three years since I last held My Little Girl in my arms - three long years since I last smelled her hair, kissed her mouth, touched those dimples in her hands.  I can't believe we've made it this far - that we have survived THREE years without Ellie Kate.  There were many times when I didn't think that was possible!  Gratefully (and ONLY by God's grace), we are still here . . . and we are okay; better than okay, really.  We are GOOD.  Even though there are very bad times and very bad days, even when my heart feels like it will physically burst over the loss of Ellie Kate, God has allowed me to be happy and joyful.  

Thank you for the many ways you supported us this week.  The pictures and videos you've sent us of your balloon releases in Ellie's honor have lifted our spirits, just as those beautiful pink balloons flew up to the sky.  Thanking you is just not enough for me and for Mike, so we are asking the Holy Spirit to come close to each of you, allowing you to taste our great love, respect and deep gratefulness over the many ways you've honored Our Daughter this week.

Balloons were let go all over the world, including this last bunch, sent from Spain! 

One last thing we wanted to leave you with tonight - Our friend, Rose Michael wrote a book called, "The Secret Place". God gave Rose this special picture of Ellie Kate in the "Secret Place" of Heaven, very shortly after her death.  The first time I read it, it was breath-taking to me and I am eternally grateful for the peace God has brought me through the message of this little chapter of the book.  I hope you enjoy the words and the pictures God places in your mind as you read this excerpt:


"THE PRINCESS"
by Rose Michael

We passed by many walls of testimony and I was so surprised to see so many names I was familiar with in the Bible next to a mother believing for a lost child or a young man trusting God for provision for his family.  They all had one common thread, their faith in God.  The wall of testimonies was the Hall of Faith.  Just like in Hebrews eleven all were there by faith.  

 As we were standing in front of a large stone wall, I saw a beautiful little girl dancing and twirling and laughing in the center of the room.  She looked like a little princess.  When she saw the Lord, she ran up to Him and jumped into His arms.  He began dancing with her, singing a song to her as they danced.  She was delighted to have His full attention and nothing seem to matter but the two of them.  I watched as the Lord carried her in His arms holding her tightly as they danced, telling her how much He loved her.  I had sat down on the bench waiting for them and read the name Ellie Kate written on the wall in front of me.  Just then they walked over to me and the Lord said " Let Me introduce you to My special friend, Ellie Kate."   Before I could say anything she reached up to me and hugged me tight and kissed me on my cheek.  Then off she went skipping and singing, ready for her next adventure.  
 "She is one of My favorites",  He said with a twinkle in His eyes.  I knew He truly meant it.   I started to ask why her name was written down on the wall of testimony but He spoke before I could ask,  "Let's read her story together".

 "My darling daughter Ellie Kate was born December 4, 2005 and graced us with 7 years of life before returning home to the Lord.  She was born with a rare and terminal genetic disorder that prevented her from walking or talking or even eating as we do.  But that did not prevent Ellie Kate from lighting up a room and touching everyone's lives that she came in contact with.  She had a special relationship with Jesus and drew people to Him.

I am constantly reminded of how close to the heart of God she really was on this earth and how she is experiencing His presence in a way I can only dream of.  Through our little girl's life God has given my husband Mike and I our calling in life - to reach out to families with disabilities. So many doors of opportunity have opened up to us because of our precious Ellie.  It is not something we would have chosen for ourselves or for our daughter, but nonetheless we have allowed the Lord to use for His purpose and His glory.

 She touched the lives of everyone she came in contact with, anyone who saw her picture, even anyone who heard her name.  All without a word ever spoken!  What an honor and privilege it has been to be Ellie Kate's mother.  Through the heartache and  happiness and sorrow and complete joy of this journey, I stand in awe of the beautiful tapestry woven by God."


I could feel the love the Lord had for this little girl and her family.  I could not speak, but waited on Him.  He cupped my face with His hands and looked deep into my heart and spoke, "My perfection was completed in little Ellie Kate".  No more was said. I understood.  He inhabited her completely.  Her body may have not worked as we think it should, but her spirit was perfect and pure and whole.  No wonder people were drawn to her.  He dwelled in her with nothing interfering with His holiness.  Only a little princess made to praise the Lord!"

 Your testimonies I have taken as a heritage forever, For they are the rejoicing of my heart.

 (Psalms 119:111 NKJV)

He who has received His testimony has certified that God is true. 

(John 3:33 NKJV)

T'was the Monday of Heaven Week

I believe I have run out of words - the right words to encourage you to go out and recklessly love those around you; the right words to tell you what we are continuing to face as a family.  I don't have words intricate enough to express my feelings for this week that I dread, the anniversary of Ellie's death. The only thing I can say, is that our wounds are still fresh and our groanings truly are too deep for words.  There has been great beauty though, as the Lord has drawn me to Himself this Advent - hope, newness, providence, and peace in the midst of pain.  

I do have one request: on Ellie's Heaven Day, December 23rd, we would love to see pink balloons released in her honor.  If you are able to do that, please post or send us pictures.  If that isn't possible, please go out of your comfort zone to love on someone you normally would not.  You can post that as well as an encouragement to us, knowing that "reckless love" IS being done this month in honor of EK (we haven't had many posts about it this year).

Since appropriate words escape me this evening, I'd like to leave you with quotes taken from,"The Greatest Gift - Unwrapping the Full Love Story of Christmas", by Ann Voskamp.  Did you know that Advent is a Love Story?  It truly is!  A Love Story for us as Believers, and it all started with this wonderful gift that changed humanity and eternity forever -  the Gift of Jesus Christ, who himself fulfills Love's true meaning.  

I pray that you read these quotes with Christmas, with Advent, with the Gift of Jesus in mind . . . 

"Strange, this familiar Father of prodigals

whose love, too much for one lifetime,

wills that we shall share the 

feast of forgiveness and joy

in the epilogue of eternity."

J.F.Wilson

"He was created of a mother whom He created.  He was carried by hands that He formed.

He cried in the manger in wordless infancy.  

He, the Word, without whom all human eloquence is mute".

Saint Augustine

"It was not suddenly and unannounced that Jesus came into the world.  He came

into a world that had been prepared for Him.  The whole Old Testament is the story

of a special preparation . . . 

Only when all was ready, only in the fullness of His time, 

did Jesus come".

Phillips Brooks

"A prison cell, in which one waits, hopes . . . and is completely

dependent on the fact that the door of freedom has to be

opened from the outside, is not a bad picture of Advent".

Dietrich Bonhoeffer

"I am more sinful and flawed than I ever dared believe, more loved

and welcomed than I ever dared to hope".

Elyse M. Fitzpatrick

"Assurance grows by repeated conflict . . . When we have been 

brought very low and helped, sorely wounded and healed, cast down and raised again . . . 

and when these things have been repeated to us and in us a thousand times over, 

we begin to learn to trust simply to the word and power of God".

John Newton

"God is coming!  God is coming! All the element we swim in this existence, 

echoes ahead the advent.  God is coming!  Can you feel it"?

Walter Wangerin Jr.

PRAYER:

• Tonight, while getting suitcases out of the attic for our get-away trip this week, Mike fell out of the attic.  He fell backward from the top of the ladder, landing first on his ankle.  It is now swollen to the size of a soft-ball and he is in a lot of pain.  Mike had osteomyelitis in that very ankle when he was a teenager.  His fall busted open that giant scar, but only in a small part of it (no stitches needed).  We aren't sure if we can even make it to our get-away spot, even though it isn't far.  Having things up in the air isn't exactly how we wanted this "peaceful" time to be.

• It's the toughest week of the year for me, which means it has the propensity to be a hard week for the rest of the family.  Praying in specific ways, as the Holy Spirit leads, would be wonderful.  I am weak and have been having grief-sickness (this is something that hit me during Ellie's hospice time and continued on and off until now; it feels like you've been hit by a truck matched with extreme nausea.  I DON'T want it this week.  I want to be happy for My Children.  I want to make it special for them!  

• We desperately want the children to be happy and to feel special, without much sadness at Christmas time.  We want to focus on Jesus' birth and not solely on Ellie Kate's death.  Henry is struggling and we've encountered the above situations to boot.