Good Things

So I didn't realize until after I sent the last email/post that 'virus' was probably not the best subject line.  Sorry about that!

Thank you so much for your prayers, always - God has kept us healthy and Elle was completely healthy going into last week's infusion.  She had her typical symptoms post-infusion with nausea and fever but the nausea seemed a little less.  Also, her usual super fussy/grumpiness the Sunday/Monday/Tuesday after an infusion has been nonexistent this week!!!  It's so wonderful to have her happy and silly and smiling and giggling so much.  

Also, her seizures have continued to be so much better!  It's amazing and we are so very, very thankful for this bright spot in her life - it gives her such a better quality of life.  I feel that she is still noticeably weaker than she was in January but she is fighting to keep those muscles strong. Her determined and willful spirit is a good thing as she fights this disease. :)

Elle's sleep has been less than stellar but we are getting through. 

A specific prayer, please, for sleep for her as well as appetite.  She lost 2 pounds in between the last 2 infusions (a 2-week time span).  But thankfully, her appetite has seemed to improve the last few days and she has even been eating new foods (which she rarely, rarely, rarely does)!  Please pray that she continues to eat and try new (and healthy) foods!

And please continue to pray for Ann Carlyle.  I think she is having a rougher-than-usual time lately processing Milla's death and trying to deal with Elle and momma traveling so much.  Please pray for her heart.  And pray that she is able to process things in a healthy way.

Frazer was able to get away to snow ski last weekend with some buddies.  We are so thankful that it was a wonderful time for him and thankful for a short reprieve (relatively) of the weight that is constantly on his shoulders as husband and father. (And sooo thankful that he came back in one piece and no injuries!!)

We continue to strive to rely on our God to sustain us - to give us strength - to give us life and joy.  The light is brightest when darkness is present.  He is good.

Much love!

Dana

Virus

Hello to all!

We are keepin' on keepin' on around here.

Elle's last couple of infusions have been a little difficult.  Last week, she had a fever virus earlier in the week that rolled into her infusion day.  Then her infusion had her feeling pretty crummy and that crumminess continued into this week as she was still getting over her virus.  We had to take her in to get a chest X-ray yesterday just to make sure nothing was going on in her lungs.  The doctor ended up checking everything...lungs, blood, urine, etc. but thankfully everything checked out okay.  So we are praying that she gets healthy and strong by the time we go back up to Columbus next week.  This morning she really seems to have turned a corner.  She's super tired (having a fever for so many days in a row will do that to ya) but her cough and congestion has cleared up a lot.

We aren't sure if the virus combined with her last infusion was the culprit but her speech and muscle coordination/strength have dipped back down and her seizures have been worse.  Cognitively, though, she seems stronger.  Which is amazing.

So basically more ups and downs.  More hospital stays and doctors offices.  And as a fellow Batten mom told me the other day, when she's up, I'm up but when she's down, I'm down.  It's hard not to let my emotions ride along with Elle's ups and downs...it's hard not to let those emotions lead my days.

And the lack of sleep isn't helping matters.  I don't really get much sleep at all while I'm in Ohio with Elle and then one of our night nurses was sick this week so I'm recovering from a severely sleep-deficient week.

Please continue to pray for our travel and that the weather cooperates (which it has so far!).

Pray for our hearts as we try to find our way through each day without our Milla being here with us. 

Pray that Elle gets lots of sleep and rest the next few days and that she feels better and stronger.

Pray that the rest of us stay healthy (which we all have - miracle upon miracle!) and that this city gets healthy.  These viruses are running rampant around here!  It seems like everyone I know has at least one sick family member.

Happy weekend and much love to you and yours,

dana 

Pictures!

Sweet sisters Elle and Ann Carlyle snuggling after school

I love this picture of Ann Carlyle - grabbed a box and wanted to make a rocket ship - she is so creative :)

Another sweet snuggle moment between Elle and Ann Carlyle

Our amazing Dr. Emily at Nationwide Children's Hospital in Columbus, OH

Elle, Frazer and Milla

Sister love with Ann Carlyle and Milla

Elle

Ready to infuse!

On our way to Ohio!

A couple of weeks ago, I got to get away to the mountains with 2 of my besties

Infusion time

Ann Carlyle, Elle, me and Frazer enjoying our fire

Elle and Ann Carlyle

Hello Again

It's been awhile - honestly, I didn't realize how long it had been until I was looking back at the last update. 

Part of the radio silence has been due to busy-ness.  The whole going-to-Columbus-every-other-week thing along with the holidays and getting back in the swing of things (well, trying to, at least) has been difficult.  Also, I haven't felt like I have had anything to say.  It's weird.  I either feel too much or too little and both feelings make me clam up.

Truly, I don't know of anything else that people can do to make our treks to Columbus easier.  But it is still exhausting and hard.  Ann Carlyle hates that one of us has to go - doesn't matter which one of us, she's not happy about it.  And as of the beginning of December, Elle has been having a reaction to the enzyme infusion.  She has started running a pretty significant fever for about 48 hours post-infusion.  Also, she had a severe vomiting episode after the January 5th infusion and only a couple of rounds of zofran (anti-nausea med) kept everything down after this past week's infusion.

We have been able to get Elle's infusion out-patient in the research clinic (still on hospital property but not in-patient) since the beginning of December, but after the vomiting reaction, she was admitted to the hospital overnight so they could run (seemingly) every test known to man to make sure she didn't have some kind of infection.  Everyone was pretty worried about her because no one in the clinical trial has ever had that reaction.  (However, a 24-hour fever is relatively common.)  But it seems that this is going to be Elle's norm for awhile as the enzymes are most likely building up in her brain at this point (a good thing) and her body may be having some kind of autoimmune response to it.  We don't know if she will always feel rotten and have a fever following an infusion or if her body will eventually get accustomed to it all.

The good news is that we are seeing her have days where her seizures are way down in frequency...but the ones she has are pretty intense drop seizures.  We are also seeing an, albeit small, improvement in her speech and strength/balance.  I think her tremors are a bit better too at times.  None of these things are a constant change, but the little pockets of times where we see improvements are encouraging.  

But the fickleness of it can be difficult and discouraging.  I can't help but feel tense and exhausted riding this roller coaster of is she better/worse/the same?  I don't know if her head hurts or her tummy hurts or if she feels out of control.  Sometimes she will be screaming and crying more-so than usual and for no apparent reason.  I hate that she can't tell me what is going on and I hate that in those times, I can't fix it.

I think we can confidently say, though, that Elle's disease progression has slowed down.  This could be due to the enzymes or it could just be her path.  Milla had times of progression and times of plateauing.  Regardless, we are very thankful for Elle's slow down, especially after the months-long steep slide she had this past summer.

The physical, mental and emotional stress of her journey threatens to undo me at times.  Just getting out of bed can feel like a climbing Mount Everest.  Once I am out of bed, the ball starts rolling and fortunately carries me along for the rest of the day.  The busy-ness of life is a blessing and a curse.  I would love to not have any responsibilities and sleep this all away, but I have 3 people who greatly depend on me and who I love so much, therefore, I have to get out of bed.  And in the end, I am thankful to have my people to force me to work through my grief and not just sit in it for the rest of my life.

I still feel in the fog and shock phase much of the time, although more and more, the deep, dark, searing pain of Milla not being here touches my heart and it literally takes my breath away.  I can't even begin to express how much I miss her.  While I know with all my heart I will see her again, most likely it won't be for a very long time, and so it can feel like that time will never come.  My heart feels raw and bruised and broken and I wonder, when will it not feel like this?  When will it not be so hard to breathe in and out?  When will my chest stop hurting?  When will I feel like that person I used to be that doesn't have so much anxiety just being around other people?  And I know I will never be the person I used to be.  That person changed in October of 2014 when we got Milla's diagnosis.  And I have to be okay with that.  And I am okay with some of it...still struggling with other parts of it though.

Frazer and I are doing okay - our tanks are empty but together, we are okay.  Please pray that we will continue to stay connected and relating well to each other.  We both very much know that it takes a lot of work to make it through this together.  In the depths of grief, it is hard not to shut down and shut everyone out, even the ones you love the most.  

Also, please continue to pray for our hired night help.  We are still having issues with the staffing agency that have been going on since July.  It is utterly exhausting and has caused so much frustration and stress in our daily lives.  

Ann Carlyle is doing better, I think, being back at school.  The holidays hit us all pretty hard.  Harder than I thought they would.  She's still talking about Milla and being open about her grief - in general, she is doing well.

Thank you to everyone, again, for all your help and support with groceries, dinners, carpool, child care, Ohio travel, Ohio house, Ohio help in every way, prayers, encouragement and friendship near and far.  You people are amazing.  Thank you for helping us get through each day.  You are a God-send.  Truly.  He uses people in mighty, mighty ways - nothing is a big thing or a small thing - all are mighty.  Even when it's hard to see or feel anything but pain, He is moving, He is working.  He has never left us and He never will.  

Milla loved birds - she loved listening for them and hearing them even when she could no longer see them.  'Bird' was one of the last 4 words she could say.  She was so proud to be able to say it.  She was so excited when she would hear one sing.  I always think about the sparrow when I think of Milla.  God tells us His eye is on the sparrow and yet how much more valuable are we to Him? 

(You will find this in 2 places...Matthew and Luke. So it must be something super important that He wants us to remember...something that, perhaps, we easily and often forget.)  

My heart finds comfort and joy in thinking that His eye never left Milla.  Not for a moment.  And you know what?  His eye has never left me either.  Not for a moment.  Even though great pain and sorrow has come into my life, He stays true.  He stays the same.  Ever faithful, ever loving, ever present.

Where else can I go?  He is the Christ.  He is the Light.  He loves us so, so much.

God's love and our love to you and yours,

Dana

(I'm planning on loading some pictures onto the blog tomorrow.)

Hello

So this is a hard update to write. 

First of all, how are we doing?

Well, that's a tough question to answer.  It's complicated.  It's hard.  It's painful.  We are exhausted...physically and emotionally.  We are still in shock a good bit and feel numb much of the time (which is a probably a good thing right now) but when the pain and grief seeps in, it can feel debilitating.  

We have been actively grieving for the past 2 years for Milla and Elle.  We have grieved for so much for so long but now our grief is somewhat different because Milla has died. We have moved from anticipatory grief to a much more complicated grief.  And because we don't know what Elle's future looks like, we still have anticipatory grief for Elle.  And we are realizing that our grief for Milla might be delayed because of Ann Carlyle's needs and more specifically, Elle's physical needs.  

Complicated.

Ann Carlyle is doing relatively well in that she is talking a lot about being sad and missing Milla.  She is not bottling anything up - so very thankful for this.  She has enjoyed being at school - school has been a good distraction and the activity and norm of it makes her feel good.  The teachers and the kids and the kids' parents have been amaaaazing.  Thank you, thank you, thank you, CMDS people.  I'm a little worried about Ann Carlyle having 2 weeks of Christmas break (lack of schedule, etc.) but I think our friends and family are planning on keeping her as busy and as happy as can be.

Elle - oh Elle.  She has been so, so, so hard.  She is super needy and clingy to me and especially to her daddy right now.  She is frustrated a lot and nothing seems to hold her attention for more than 30 seconds.  She has no sense of danger but is constantly on the move.  She is not able to walk and she has drop seizures frequently.  We do see some bits of positive things lately that may be due to her enzyme infusions - we are still going to Columbus, OH every other week with her for 3 or 4 days and will continue to do so indefinitely.  These enzymes are a treatment that she has to continue to get.  I liken it to a diabetic needing insulin.  A (certain type of) diabetic doesn't make insulin, so they have to get it regularly.  Elle doesn't make these enzymes so we have to give them to her every 14 days.

Please keep praying for us as you have been doing so incredibly faithfully.  

Please don't be afraid to say Milla's name or to talk about her.  It is comforting to us to talk about her. :)

We are going to hurt longer than any of us want and that it may not look 'normal.'  Some of our grief is going to be delayed.  We are taking things one step at a time - just doing the next thing each day - literally.  

So many of you have asked how they can help - and you are all doing such amazing things to help us day-to-day, to brighten our day, to make us smile, praying for us.  Knowing that we are not alone is so big.  We have cherished every word that has been said to us, texted to us, emailed to us or mailed to us.  We have cherished every hug and every squeeze of our hands.  We have cherished every act of love towards our girls (and us).  We have cherished every act in honor of our Milla.  Please know we are treasuring it all away in our hearts.  It all helps to keep us going and it will continue to keep us going as we are trying to find our way through all this.

Thank you to all that came to the visitation and/or funeral for Milla - and to those that were there in spirit.  It was a hard time to be sure, but our souls were so uplifted as well.  The services were amazing and we were so thankful to have so much support during those days.

God is so good.  We are in the season of celebrating Emmanuel - God with us.  Jesus became one of us and died so that Milla could be with Him forever.  Glory, glory to the newborn King.  Milla is healed.  She is running and leaping and laughing and shouting and singing.  And we miss her so very much.

Joy to the world, the Lord has come!  Much, much love,

Dana

In Lieu of Flowers...NOTE CHANGE IN ADDRESS...AGAIN...

In lieu of flowers, we request that memorials be made to the Baptist Kemmons Wilson Family Center for Good Grief.

Memorials can be mailed to:
1520 W. Poplar Ave.
Collierville, TN 38017

Or through:
www.bmhgiving.org

Thank you, friends.

Services

Visitation will be Monday from 5-7pm at 2nd Presbyterian Church in Memphis. Service will be Tuesday at 1pm, also at 2nd Pres, followed by graveside service at Memorial Park.