Eternity and the "In-Between"

For those of you who don't know, Ellie Kate McLaughlin was born on December 4, 2005 and died on December 23, 2012.  Having everything rolled into one month brings many ups and downs. It's a true, violent roller-coaster that you often want to get off of.  Correction. It's a violent roller-coaster that you simply want to jump off of, and back onto the safety of the non-spinning, non-moving, predictable, stable, ground.   

The truth is that this month has been wonderful.  So many stories of reckless love being demonstrated;   excitement over the gifts for Children's Hospital showing up at our door, Christmas cards hanging in our kitchen, Christmas parties, etc . . .  and then . . . this week everything really hit me.  I'm flooded with memories of two very important times in our lives - in Ellie Kate's life - the time surrounding her birth and those intense early days, and the short time we had at home with her before she went to be with Jesus (three days).

This week I am hit with the smells of Baptist hospital where we were told Ellie probably wouldn't make it through the night.  I can smell the soap and hand sanitizer so clearly.  Bittersweet memories flow as I remember walking out of the meeting with the doctor as Ellie was placed on the ventilator. As we walked out of the PICU  I saw so many people from our church on their knees praying for Our Princess.  It was surreal and I remember exactly how I felt at that moment.  I remember the song that I would hear on the radio so often as I drove to Baptist each day (they told us we weren't allowed to stay with Ellie Kate because she was too fragile), and even the smell of the cafeteria there.

Then there is the heartache of the end and the suffering that Ellie endured.  Those last several hospital stays from September to December, almost constantly in and out.  And then at home on hospice and what we saw, what we heard, what we did, what we felt . . . it's all very real this week.  I am torn to pieces over these dark memories.  They shake me to the core, but then I also see the goodness (yes, goodness) of God in His timing in that all of our family was near.  Everyone got to say goodbye and that wouldn't have happened any other time of the year.

Very conflicting feelings.  Very extreme.  Incredibly intense.  

One day this week, when I was having trouble simply functioning, my Mom  encouraged my heart with Scripture.  In the beginning of our loss, I hated hearing God's Word.  My heart was too broken to hear anything really, but now - oh, I want to know God's heart!  I must be reminded of His goodness and His love!  I must be reminded of eternity!  And that's what my Mom helped me to focus on - eternity and all that Ellie Kate is experiencing.  No more hurt.  No more sickness.  No more time.  No more sadness.  Everything we enjoy on earth, but perfected in every possible way. THAT is what MY DAUGHTER IS EXPERIENCING!

Mom also reminded me to focus on the "in-between", and not just on the dramatic and tragic beginning and end of sweet Ellie Kate's life.  The beautiful, glorious, joyful "in-between" that made up the majority of her remarkably unique life.  Our Daughter led such a rich life! Her viewpoint was simple and happy. EK loved her life. 

Thankfully, I'm truly not used to this deep sorrow and heart-sickness staying with me for such a long time anymore.  I'm so grateful that I have been able to focus on eternity for a while now, so feeling so broken and vulnerable has caught me off-guard.  But, that's what happens when you love much, when you love deeply, when you love recklessly.  And that's how I still love My Ellie Kate. 

I'm not sure how next week will be for us, or even next year and the anniversaries to follow.  I don't know if my body will always fail me during this time, or if I will be able to rise above it all.  I am CHOOSING to rest in these things tonight:  knowing that My Daughter is in a perfect eternity, where I will one day join her AND knowing that she lived a wonderfully, happy life here on earth.   

On the Night You Were Born

"On the night you were born, 

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered, 

Life will never be the same.

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend, 

and it never will, not ever again . . . 

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born."

- On the Night You Were Born by Nancy Tillman

On that beautiful Sunday night in December, when Elizabeth Kathleen McLaughlin was born, I knew it was a magical night.  It was special in so many ways; breathtaking, really.  In those moments, as I held her for the first time, I knew my world, my life, had changed.  I didn't know however, that the entire world would never be the same.  What a privilege I've been given in being Ellie Kate's Mother!  And this year, maybe more than ever, I am reminded of how God uses Ellie Kate to touch the lives of others.  Other than knowing Christ, what greater thing could we ask for as parents than for our children to be safe, to feel loved, and for them to make a positive impact on the world around them?  All three things are true for My Daughter.  

Yesterday was truly one of PEACE.  I laid in bed yesterday morning thinking of the peace I felt, grateful for it, and thanking God for each person who has been praying for me to experience His peace on Ellie's birthday. Your prayers do not go un-noticed.

Mike and I arrived at OU Children's like giddy little children yesterday afternoon, ready to hop out and distribute all of the wonderful gifts that you have given.  We met up with Cara from Child Life, who so graciously allows us to do this in honor of Ellie Kate.  Cara is a minister to these families, although that title isn't in her official job description.

We had two giant carts, full to the brim with gifts.  Books, toys, puzzles, games . . . your donations this year were incredible! The entire time we were there last night, Mike and I kept looking at each other and saying, "I can't believe we get to do this!".  The truth is, we wouldn't be able to do it on our own.  We don't have the money to buy nice gifts for so many children.  On our own, we don't have the energy to go up to the hospital, see those same Christmas decorations and walk those same
halls.

our silly candid shot - can you tell we are excited?!

This year we were able to go to three floors, and oh what a joy it was to see those sweet families and those precious children!  Their eyes popped open as they saw the extravagant gifts that they were able to choose from. These aren't second-hand gifts, they are new, amazing gifts and many of these children don't have the opportunity to open new gifts very often.

Some of our favorites were the kids who didn't have family there, either because of difficult circumstances or because they lived out of town or had other children to care for.  These children especially lit up with delight as they chose their gifts.  We were able to remind families that they are loved.  We told them that we were so sorry they were in the hospital at this time of year, and that we know how difficult it can be.  If we hadn't been through life with EK, we never would have been able to have that experience to share with other families.  Without our own journey, we wouldn't be able to tell them that they aren't alone and that they can and will survive this season in their lives.

All of the families and children were special, but a few of them really stood out.  The sweet mom who came back around to find us just so she could give me a hug and say "thank you" one more time, with tears in her eyes.  "H"'s mommy, who was tired and weary from being inpatient with her son for months at a time.  Because of the Lord and HIS strength, we were able to speak life to her and encourage her in ways that only parents of "the club" would really understand (we pray that she will come to Hope Link soon and get connected with other mommas in similar situations!).

We wrapped the night off on the 10th floor in the Transplant Unit.  That's a hard place, ya'll.  Kids can't leave their unit, so their families set up "home" there in their hospital room, glass doors and all.  Our favorite family on this floor was that of Bennett Hanneman.  Bennett is a brave little man with an infectious laugh and gorgeous smile.  He has been through so much in his little life, and now he is preparing for a bone-marrow transplant.  Aimee Hanneman, Bennett's mommy, is one of my very good friends and also a fellow Hope Link mommy.  This family has been in the hospital for several months and they have several more months to go (and that is if all goes as planned).  Would you pray for Aimee, Ben, little Bennett and big sister Adeline as they live in the chaos of hospital life and serious illness?  Pleases also pray that God would restore and preserve Bennett's life. Oh, Father, a part of my heart was left in Bennett's room!

After the hospital, we headed to my parent's house for a little family birthday celebration for Ellie Kate.  I started crying as I walked in the door and saw pictures of our Princess lining the mantle and tables.  It was decorated so sweetly and seeing those beautiful photos, along with our family gathered together . . . it just moved me in such a strong way.  We ate pizza on Hello Kitty plates, just as we did that last birthday up in the hospital with Ellie.  We sat around and talked about her - about our favorite memories, our favorite stories and about what we miss the most.  Mike's parents, My Parents and my sister, will never know how much last night meant to me.  I heard how much they all love Ellie.  To have us all at the table together, talking about Our Girl and how special she STILL IS to us . . . it was a night to remember.  

Friends, thank you for allowing us the opportunity to go and love families like ours.  We do not take your sacrifice, love and gifts lightly.  We carry each one of you in our hearts as we go and meet these families in Ellie's honor.  You help make what could be a very hard day, an incredibly special and life-giving day that we will always look forward to.  How very grateful we are.

I also want to make sure everyone ALWAYS knows that this is NOT about us.  Who knows what you and your family would be doing in this situation?  Who's to say you wouldn't be doing the same thing, or even more?!  God has given us this opportunity.  And though I don't exactly like the way He allowed things to happen, I'm sure glad that He did!  Your prayers, cards, letters, emails, texts, meals, AND gifts for these children, allow us to go out and do things like this in our Daughter's name.  It is because of JESUS and because of His work in YOU.  It will never be about us in any way, shape or form, but rather about Him and His people coming together to love the world around them.

My Dearest Ellie Kate, on the night you were born, the Heavens opened and the Angels did sing!  The Father knew He was placing a very important little person into our hands, and I'm forever thankful that He entrusted you to us. I'm overwhelmed at the gift of YOU and that He gave you to two broken people like me and Daddy. 

You, Little Love, continue to touch the world around you in big and valiant ways.  Because of you, families feel loved and they know that they aren't alone.  Children feel special, remembered and cared-for,  no matter what their outward appearance might be!  Because of your life Sweet One, thousands of people are now open to special needs children, to sick children and their families.  

You have helped others recognize the importance of loving and serving those who are forgotten.  Jesus doesn't forget people who are sick, who are hurting and who are left behind - He runs to them, and your life teaches us to do the same! You made such a difference in the short seven years you lived on this earth, Sister Sue.  You will continue to make a difference in the lives of others forever more.  Because of you Ellie Kate, life will never be the same.  

The Month of Reckless Love

December is now upon us, and thus begins "The Month of Reckless Love in Honor of Ellie Kate".  This Thursday, we will celebrate what would have been Ellie Kate's 9th birthday.  I wish I could say that I'm writing this post with the utmost of joy and anticipation, but to be truthful, my heart is in a million pieces.  

I've been told that losing a child is the hardest thing you will ever experience.  I don't have much to compare it to, but I tend to agree with that statement.  I cannot imagine anything more difficult than losing a part of yourself - a little life that you were ordained to love and care for.  Those sweet giggles and smiles and hugs, gone forever until you are reunited in eternity.  A little person that you didn't have the privilege of watching them grow up. God's plans were ever-higher than mine for Ellie Kate, and I trust His timing and His purpose, but that doesn't mean that it doesn't rock me to the core.  And sometimes the sting is so fierce and the pain hits you, wave upon wave.  

While my heart is deeply grieving and mourning already, I am sweetly looking forward to celebrating Ellie this month, and particularly this week at OU Children's Hospital.  So many of you have sent gifts to be given to patients there.  So many have shared details of Ellie's Month with others.  Your participation in this shows us support and love - I just cannot stress that enough.  In participating, you show us that Ellie Kate is not forgotten.  You remind us that there is purpose in her suffering, and in ours.  Watching you give, serve and love lets us know that Ellie's life is having a ripple effect, and that the reckless love we learned from her is continuing to touch the lives of those around the world.  

Today, in our church service, Pastor Sam spoke on "Nowhere Else to Go".  It sounds a little strange for a sermon, but it spoke straight to my heart today.  In John 6:60-70, the disciples had started doubting Jesus and his words.  They said, "This is hard teaching.  Who can accept it?".  And you know what? It IS hard teaching - calling one to lay down his life, to make Jesus Lord and King of their life.  Complete and total surrender.  That isn't exactly the kingdom of God on earth that the disciples likely imagined.  Many of the disciples decided to leave and Jesus asked His twelve if they wanted to leave too.  But Peter answered him, “Lord, to whom shall we go? You have the words of eternal life.  We have come to believe and to know that you are the Holy One of God" (John 6:68-69).  

You see, like Peter, and like all true Believers and Followers of Christ, I have no where else to go.  How do I get through this?  How do I face another day?  How do we survive as individuals and as a family?  It's because all I have is Jesus.  I have nothing on my own.  I fail in every possible area, but He is my portion forever.  And this isn't a sad thing; not a desperate thing.  This is an amazing thing for me to proclaim and cling to - Jesus is all that I have.  That is more than enough, and I am clinging to this truth right now.  

Now on to celebrating Our Girl . . . 

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 taught us well, and we want to teach the world to love in the same 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 an entire 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. In Honor of Ellie Kate - FACEBOOK PAGE

Ways to Participate in the Month of Reckless Love:

1. Purchase items on our Reckless Love Wish List: All interactive toys and books donated will be given to ill children at OU Children's Hospital on December 4th.  As a family we will be delivering these items as we celebrate Ellie Kate's birthday:  In Honor of Ellie Kate - AMAZON WISH LIST

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

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.

FOR WAYS TO GIVE while receiving a tax write-off: 

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

*Give to OKC Hope Link OKC Hope Link- - a ministry we help 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. 

 

I will never be able to express to you what this celebration means to me as Ellie Kate's mother.  For Conner and Henry to grow up knowing, that each December, people will come together in honor of their sister, going out to love the world around them with reckless abandon - it is a priceless treasure.   With all that I am, I thank you with a heart that is grateful beyond words.  - Ryan

Lucy is Three!

I've been bursting with joy, excited to post about our Sweet Girl this morning!  I'm just overjoyed that Lucy is OURS and that God has allowed her to live to the age of THREE! What an unspeakable blessing!

Although Lucy isn't officially our "rainbow baby", she comes very close to it.  She was only one when Ellie Kate died, and she has been a saving grace to me, to our family, in so many ways.  Lucy is the baby we didn't know we would have, but she is a blessing God knew we needed!

I remember longing for another baby, but we knew the risks - a one out of four chance with each of our pregnancies to have NKH.  Those aren't good odds, folks.  I spoke to my Dear Friend and faithful prayer partner Dana one evening, and shared with her our desires.  She committed to pray, and a few weeks later, we found out we were indeed pregnant.  How can you get pregnant on birth control?  I don't know, but Lucy is proof that it does happen! 

Early on I could feel this Sweet Baby move inside of me, just as with Ellie Kate.  10-12 weeks is early to feel a baby, but I promise that I felt those girls move that early.  I was thin with both of those pregnancies.  As soon as I felt Lucy move so early, I knew she had NKH.  I didn't want to believe it though, and we of course went ahead and did our CVS testing.

The first time I saw Lucy on that large screen in the genetic OB's office, I knew she was a mover and a shaker  She was this little sprite, all of twelve weeks gestation, moving and bouncing all around in my womb, just as Ellie Kate had done.  Mike and I had several names in our head for this girl (I knew it was a girl because of how sick I was from the beginning and I only get sick with my girls).  We saw this Baby Girl that day and knew she was a Lucy, right away.  "Bright Light" is what she was, bouncing around in there, happy and free.  And her middle name would be "Belle" after a dream God gave me of bringing beauty from ashes.  Oh, how much truth was layered in the name God had given Lucy Belle!

Lucy's birth was exciting!  I was terrified of early labor, and had contractions on and off for months.  I made many trips to Labor and Delivery.  I knew that all of our doctors, the geneticist, the NICU, etc all had to be on hand, and I didn't want to miss that window.  So at any sign of labor, I went to the hospital.  The morning of the 26th, I was tired.  I got the kids to school and went to my parents to take a nap.  I woke up frustrated and hurting, in the same labor pain that I had been in for weeks.  I stood there telling my parents that I refused to go to the hospital anymore until my water broke (which was silly, bc my water had never broken with any of my other babies).  I kid you not, folks - right then and there, my water broke!  In front of my parents, and we laughed and laughed. 

I ran to take a shower and get ready.  After all, I heard all of these stories of girls' water breaking and them having hours before delivery.  Once I got into the shower, it was clear that this baby was coming fast.  I barely got clean and we jumped into the car, Henry and mom in the back and my Dad driving us to OU Children's Hospital.  I was hurting and felt like I would have that baby right then!  This was not in our birth plan. 

We arrived and I got into a room and was already dilated to an "8".  It was less than an hour since my water had broken!  My dear, dear friend Holly Hall was able to come in and take pictures of our labor and delivery.  We had planned this because we didn't know what would happen with Lucy.  Would she stop breathing right away?  Would she cry?  Would we ventilate her?  We weren't sure about anything, but knew God would tell us during the moment.  So, we asked Holly to capture the moments that could be Lucy's first and last breaths.  I am so grateful for these treasured photos! 

A couple of pushes and a sweet cry, and this tiny blonde-haired girl was in my arms.  They let me hold her for a few moments before the team (and literally, there was an entire team in that room) took her to the NICU.  The boys were outside the door of the delivery room and they, along with grandparents, were able to see our girl be taken to the NICU in her incubator.  I stayed in that room, wondering what was happening.  It was such a strange feeling to have everyone gone and to be just me and the nurse. 

I see now that Lucy Belle McLaughlin IS our "rainbow baby", even though she wasn't born after Ellie's death.  She is a reminder that God is good, even through struggles.  The joy Lucy brings gives life and hope to my heart and to the hearts of our entire family.  I don't know what I would do without this precious, unexpected gift of "Beautiful Light". 

 

Oh Father, you are SO GOOD!  Your plans are ever-unfolding before us and they are too wonderful for our comprehension!  Thank you for the life of Lucy Belle.  Thank you for the love, joy and hope she brings to my heart as a mother.  Thank you for the light she brings to her Daddy and to her brothers.  Thank you for allowing me to love another special little girl - for entrusting me with such an incredibly special gift, design directly by you.  Your ways are not our ways, and I am so grateful.  Bless my daughter on this, her third birthday.  Be close to her heart.  Allow her to always she you physically around her, to see her angels physically protecting her.  Let Lucy know how much you love her, Jesus.  Let her grow and soar developmentally!  Let her know just how much she is loved.  Allow her to feel safe and secure.  Oh Father, I ask that you give Lucy a long and healthy, happy life here on earth.  Help us as her parents to give her what she needs and to teach her about your love for her, always pointing her to Christ.  Thank you for this precious, most Beautiful Light. 

 

The Crazy Day

What a day!  Last night was a bit scary.  Henry wasn't breathing well, despite his inhaler and the nebulizer.  It was so scary listening to him struggle to breathe.  It brought back too many memories, and I was on edge the entire night, watching his every breath.  By around 7am, we decided to take him to the ER.  His fever was so high and his breathing so rough.  They got us right in and got to work on Henry Mac.  

It looks like Henry just has bad allergy-induced asthma, as well as a virus and a bad case of the croup. He is such a trooper and took his steroid shot, his breathing treatments, etc.  We were so proud of Henry, so we let him choose one little gift in the hospital gift shop.  He was excited to get in and quickly started piling up girl toys and gifts.  He told me that he was picking out gifts for Ellie Kate.  I wasn't sure what to say or do, so I just watched silently as he carefully picked out special gifts.  Did he forget that Ellie was dead?  Was he confused because of his sickness?  But then he ran up to me and said, "well, these would be the perfect gifts for Ellie if she wasn't dead".  Oh, my heart!  Sweet boy LOVES his sister and I think being back at Children's made him think of her.  He's been drawing pictures of her all day.  

At the time that we were at the hospital with Henry, Stan was undergoing his heart surgery.  Thankfully, Stan's surgery went well too and he is actually at home tonight!  We are so grateful for your prayers for Henry and for Stan. I think Mike is completely worn out from being at two different hospitals and going to work today.  I'm still trying to lay low with the new blood pressure medicine and the virus it feels like I'm coming down with (I think I'm just coming down with Henry's sickness).  Fun times.  

It's always something, right?  I know it's like that for everyone.  Makes you long for Heaven doesn't it?!  Lord, let your return be soon!

Ryan 

April 21, 2006

Dearest Friends and Prayer Partners,

Thank you for continuously lifting us up in prayer!  We are still watching and waiting - taking it a day at a time here at Children's Hospital.  Everyone has been great (especially our nurses:)), and the teams are working hard to find a solution to EKM's problems.

As of now, she is still having a few seizures.  Her heart rate has been inconsistent, and there are times when it stays quite low.  But, the doctors are not too alarmed.  She is on all the proper medication for both of these things - the rest is just in God's hands.

X-Rays yesterday and today show a "possible obstruction" once again, and it is just baffling the doctors.  They will be working on that today trying to figure out what to do next.  Meanwhile, EKM is being fed breast milk via an NG tube in her nose, and is recieving lots of nutrition through her TPN (temporary feeding she recieves through her IV).  She continues to slowly gain weight, which is great considering all that she has been through!

Below is an excerpt from an email on behalf of Ellie Kate.  The undergraduates in my sorority house (Alpha Gamma Delta at UCO) are putting some incredible things together for our family.  They will be walking for EKM in May during the March of Dimes.  We are completely overwhelmed by this precious gesture!  I am so proud to be part of this amazing group of young women.  Others are welcome to participate and walk as well!  Just contact the girls listed below in the email:


"Hello Ladies,
    I am sure you have all heard about Ellie Kate. Our thoughts and prayers are with her family. As a way of helping we are going to be participating in the March of Dimes on May 6, 2006 and will be walking in her honor.  Jackson our Purchasing Coordinator is having t-shirts made for the girls to walk in that are blue and say " I'm running for Ellie Kate" , so if you are interested please contact Jackson.
 We also have baby banks located all over campus to help raise money. If you would like to help out please send donations to the Alpha Gamma Delta house or call Sheena. Lastly, April 25, 2006 Alpha Gams will be waitressing at Pizza Hut Italian bistro on Memorial and May during lunch and dinner to also help with awareness. Please come out and support us! We appreciate everything you do and we hope to see you soon!"

Much love to everyone.  We will update again as things develop!

Ryan

April 17, 2006

Dear Friends and Family,

I hope you had a blessed Easter!  We had a great Easter, but spent the holiday in the hospital - much like we did with Christmas, New Year's and Mike's bday.  OU Children's Hospital has been great.  As Mike posted earlier, the facilities are pretty outdated, but the staff is incredible.

As for EKM - most importantly, she is no longer in pain.  We are so glad that we made the move from Baptist to here if only for that reason alone!  No more hours of crying, screaming, and painful movements.  Though sedated, EK is able to have moments of alertness.

These past few days have been precious.  We know we are limited on time, although unsure of just how limited we truly are.  We have had a lot of family time and have been taking many pictures and videos of our darling girl.  Ellie is still have seizures - quite frequently, although the severity of the seizures has decreased dramatically.

Right now the plan is to seek out all options we have concerning EK.  She is still not tolerating her feeds, but is receiving nutrition through her main line (located now in her chest).  Doctors have changed meds and her tummy seems to be much more comfortable.  We will continue to consult with the professionals here until we have sought out every possible treatment and remedy.  We have now though come to the conclusion that Ellie's NKH is rapidly progressing.

Another crazy thing happened to us this weekend as well - our hot water tank busted in our house!  The funny thing (well, funny to us) is that the hot water tank is in our attic.  Soooooo, our attic and ceilings have flooded!  We will have to replace ceilings,walls, cabinets, and possibly some furniture due to the destruction.  God is good though because Mike's parents happened to be at the house while it happened, and we were able to turn off the water before it caused damage to the entire house.  Thank goodness for home owner's insurance!

Ways to Pray:
1. That EKM will continue to be at peace and not in pain
2.  Pray for wisdom for the docs
3. Pray for us that we would have peace and wisdom
4.  Pray that we would be prepared for the future
5.  That VERY SOON our family would be reunited and we can go home (wherever that might be, just not in a hospital!!)

Thank you so very much for all of your prayers, love, concern, calls, notes, hugs, etc.  You are such an encouragement to us!  We love you all dearly.

Ryan
Is. 43:10

April 14, 2006

We've made the move to OU Children's Hospital.  It's a completely different environment, but then again, we didn't pick this hospital for its paint scheme or floor plan and layouts.  Ellie's geneticist saw her last night at 11:00 PM, so the move has already shown itself to be beneficial.

As some of our first updates stated, Ellie's disorder is devastating.  NonKetotic Hyperglycinemia (or Glycine Encephalopathy) is an extremely rare metabolic disorder that is destructive to the body even when on an aggressive medicine regime.  I lead with that to say this:  Ellie is experiencing more and more seizures.  They are coming harder and longer.  We are adimently trying to counter them with the appropriate meds but this is proving difficult.

We are still fighting for our daughter.  We love you and thoroughly appreciate your prayers, thoughts and support.

 - MFM

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.