May 14th

I feel compelled to check in this morning although I don't have much to say.  I'm hoping the words will just come out as I type.

We are still very much in shock.  It doesn't seem real.  Nothing is normal.  And though we are thankful for the rest and deceleration of life's everyday demands, we feel like we are drowning a bit in the vastness of our days.

I catch myself trying to be efficient in errands or tasks and realize with a sinking heart that it isn't necessary anymore.  My calendar is clear and my arms are empty.  I don't need to take a 3 minute shower.  I don't need to think ahead and pull meds and gather supplies and plan for a 20-minute routine just to get out the door.  

Almost 6 years ago, our lives changed forever.  End of August 2013...Milla had her first seizure.  She and I rode in an ambulance down to LeBonheur.  And May 4, 2019, Elle and I rode in an ambulance to our house from LeBonheur so that we could hold her in our arms at home as she met Jesus face to face.

How has it been 6 years of fighting this awful disease?  How did we endure?  How are 2 of my babies gone?  It's a fog right now that I just can't seem to see through.  I can't get my bearings.  And my brain and body are physically fighting the reality of it.  The weight of it is too much to bear so for self-preservation, I remain in the fog.  I have no choice.  It is involuntary.  I feel the need for flight.  Fleeing from all of the sorrow, from this house even.

I need to tell you all how utterly beautiful Elle's service was.  The Holy Spirit was present.  He moved and was.in.that.place.  At some point, when I get a copy, I will figure out a way to post it online.  Jesus be praised.  I want to yell it from the mountain tops...ALL GLORY AND HONOR BE TO GOD.  May all people see Him and be drawn to Him through Milla and Elle's little lives.  Oh how we long for that.

I think I will sign off for now although I think it helps to write.  Thank you for listening.  Thank you for loving us.  I have so, so, so many thank-you's to say and give to people.  I will spend a lifetime doing so.

We have witnessed much.  And much beyond our understanding.

And the Lord, it was He that did go before thee; He did not fail thee, neither forsook thee.

Much love,

Dana

Elle's Service Schedule

We want you all to know Elle's service arrangements are as follows:

Wednesday 5/8: Visitation 5:00-7:00 at Second Presbyterian Church in the Fellowship Hall

Thursday 5/9: Funeral 11:00 at Second Presbyterian Church with graveside service to follow at Memorial Park Cemetery 

Second Presbyterian Church is at 4055 Poplar, Memphis, TN 38111.

In lieu of flowers, please send memorials to Milla's House.

You can visit https://baptistgriefcenters.org/center/memphis-tn/ to give or send to:

Baptist Centers for Good Grief

1520 W. Poplar Ave, Collierville, TN 38017

Elle is with Jesus

...and Milla.

Blessed be the name of the Lord.

Love to you all - 

Dana and Frazer

5/3 Update

Hey all - Elle had to be intubated around 4am this morning after a very long and distress-filled night.  Elle got into respiratory trouble pretty quickly last night after I sent the last update.

She is mildly sedated and has been made very comfortable today for the most part.  She has finally gotten some rest that she needed although she is still very, very sick.  Please pray for a stable night tonight specifically.

We are so grateful for you, your encouragements, your support, your prayers, your love.  

Rock of Ages, cleft for me - let me hide myself in Thee.

Dana

5/2 Update

Hey guys - so we are still in the PICU for tonight.

Viral results came back positive for adenovirus and parainfluenza virus.  Basically a couple of viruses that may not even affect me and you but for her, it can cause pneumonia and breathing problems.  So those yucky bugs are our culprits.

She made a little progress on her oxygen needs but not as much as we had hoped for today...but she is still on the high-flow binasal cannula that she has been on.  Her chest X-ray looked about the same as it did when she got to the hospital yesterday.

She has a super low platelet count and a couple of other things in her blood work that are 'off' but all those things are probably due to infection.  They are keeping a close eye on things though.

She feels pretty crummy and needed some morphine this afternoon to take the edge off of her pain...it worked well so I'm glad she has something that helps her rest.

She's not the most stable respiratory-wise in the last hour or so.  I'm waiting on the doctor to come in and look at her.

Please continue to pray for Elle's comfort.  We cannot stand to see her in so much discomfort and pain.

Thank you!

Dana

Elle is sick again :(

Hey guys.  So we are back at LeBonheur as of about 11:00 this morning.  Elle hasn't been acting 100% the last few days but started getting a lot of chest congestion yesterday afternoon.  Her lungs got really junky and she had some diminished breath sounds primarily on the side where she had all the pneumonia and chest fluid a few weeks ago.  We put her on oxygen at home last night, did extensive breathing treatments and closely monitored her.  This morning she got more and more labored with her breathing and then started to drop her sat even on oxygen.  She was pretty uncomfortable.

She has pneumonia but thankfully it is not a horrible case like last time.  We are still waiting on test results to see if she has a UTI, blood infection, etc. but I'm optimistic that those will be negative.

They have her on high-flow oxygen - she did not have to be intubated (put on a ventilator) and we are keeping her off of CPAP for now, although if she gets unstable on the high flow binasal cannula (that she is currently on), then we will have to step it up.

We are still down in the emergency room but they will be moving us to the PICU at some point  for the night.  So we will stay tonight and just see what is happening tomorrow...might move her to a regular room (non-ICU room) or go home if she is stable enough and her oxygen needs decrease.  But we really don't know what tomorrow will look like at this point.

Thank you for standing with us and continually praying for us.  I was able to talk to Ann Carlyle at school during her lunch break and she is scared.  We are too.  Pray that God's peace would envelope us.  I will say that Elle is much less sick than she was a few weeks ago, and hopefully she will continue to stabilize and improve quickly.

Much love!

Dana 

Elle Update: 5 days and counting at home!

Hey everyone!  I thought I'd pop in and update y'all on Elle since we've been at home.

Overall, her lungs have improved everyday.  She still has a bit of a productive cough, but her lungs sound great and the junk she is coughing up is decreasing.

She woke up Friday with her nose pretty congested but it hasn't developed into anything more than that (and she sounds better today)...except that she has apparently passed it along to me.  I think all the stress and sleepless nights are finally catching up to me and I'm fighting a cold.  It's not horrible but I just feel so, so sleepy and run-down.

Fortunately, everyone else is healthy!  We gotta get healthy and stay healthy because we have another big weekend coming up.  It is Easter weekend and it is also Elle's 7th birthday Saturday!!  Make-a-Wish is throwing her a mega birthday party Saturday and we are so excited about it! (Thank you to Make-a-Wish and all you are doing to pull this off!)

So Elle went to school today - first day back in over 2 weeks.  She was tired but wasn't fussy when I dropped her off so I think she was glad to get back to school.  She has her infusion tomorrow and then a day of rest at home Wednesday.  Friday is a holiday, so she will only go to school a couple of days this week which works out to kind of ease her back in to her schedule.

She is definitely weaker overall than before she got sick.  She is eating well (the action of eating) but she has a significantly decreased appetite.  Her antibiotic finished yesterday which may very well have been affecting her appetite, so we will see if her eating picks up as the week goes on.  She had a couple of days of increased seizure activity but we adjusted one of her meds and that seemed to do the trick to bring the seizures back under control relatively speaking.  She's had a few frustrating and/or upsetting moments this weekend but mostly she has been giggly and happy...for this, we are so very grateful.  

Our weekend night nurse position is still not filled and our substitute nurse didn't show up this weekend - please pray that this gets resolved quickly.  We have been waiting on this position to be filled since January.  (Speaking of, my brain is ultra-fuzzy these days, so please excuse any nonsense in this update!)

As we are moving through each day and all the details and exhaustion that come with each day, it is super hard for me to be able to stop and remember this sacred thing we are celebrating this week.  Please remember with me, that Jesus came as one of us, suffered all that we could ever suffer, died so that we can be with Him forever, and rose from the dead.  He is risen!!  We love because He first loved us...with the truest love...Jesus gave His life so that we may live.  May this truth imbed itself on our hearts today and everyday.  May we, in turn, love and serve each other today and everyday.

Much love to you!

Dana