Update

So despite my very, very best intentions, I haven’t had enough minutes in a row to sit down and write and update.  But as always, thank you for staying so faithful to pray for us and for helping us get through each day.

Honestly, it is very difficult for me to write these updates as it not only takes awhile to do, but it also is so emotionally difficult.  I want nothing more than to be able to write, everything is fine now!  All is well!  And it pains my heart that I can’t write that.  

But I also know that it is a very good thing to let you in to our lives to pray for us, help us, love us…entering into our darkness and pointing us towards Light.  

Our sweet Milla is not doing well.  It seems that daily we see her slip a little more and more into her disease.  Her mind is not always clear, her speech is regressing, she isn’t eating well and her motor skills are declining rapidly.  She is very weak and most of the time wants to be held or is sedentary.  She has times where she wants so much to be active and will try to twirl and dance or jump and run but it is short-lived and usually involves a bruise or two (or three).  But most of the time, she can barely walk or even stand up.  She walks like she’s in a tilted fun-house or like she was just spun around 100 times, leaning to the side.

Also, her seizures are worse - particularly the last 4 or 5 days.  Milla's seizures throw her whole body around at times and other times it is only her head flinging backwards or forwards.  It happens so fast that there are instances that even if I am holding her, her head and upper body can fly back and hit a wall or countertop, etc.  Worse, her head can fling forward.  She is constantly sporting a black eye and/or black and blue chin these days.  We are waiting for a specially made helmet and will hopefully receive it by Christmas.  It will not prevent all bumps and bruises but should protect her from serious head injury.  She is truly tough as nails, but I just feel so sad when I think of how sore her body must feel all the time.

She had an EEG last week which showed a ‘slowing’ in her brain wave activity.  This basically shows that her disease is progressing. Also, her doctor felt that she would most likely be bedridden within 6-12 months.  And while we know for certain what this disease holds for Milla, and we see the progression in her physically, this was all still so hard to hear.  

The good news is that we can still get her to giggle and can still find things that she enjoys doing.  And we are doing a lot of snuggling because her body is just so worn out from the seizures (too, she is taking a lot of naps in my arms).  Sleep is still an issue but we’ve found a couple of ways to get us through it for now.

Also good news is that Elle seems to be doing just fine.  Her speech is a little delayed so we are going to start her in speech therapy and she has seemed a bit more short-tempered (most likely due to her anti-seizure medicine), but other than that, she is great.  Full of energy and personality - she is still our little pistol we know and love.  :)  

As with Milla, we don’t know the exact timeline of Elle’s progression, but it’s hard to think how much like Elle, Milla was, this time last year.  While we grieve this brutal disease, we are soaking up all that we can with both of them.

As always, thank you for EVERYTHING - physical, emotional and spiritual needs being met everyday.  Thank you for holding us up and carrying us forward.  Thank you for praying - and for telling us how you are praying.  Thank you for all your words in all the forms they come in and for all the little ‘happies’ for us and the girls.  Know you are being used in mighty ways by God and are most certainly treasured by us.  I long for the time to thank you all personally but as I cannot, please know our gratitude runs deep.  Know that God is using you to teach me how to love people.  I am constantly humbled by all I am witnessing.  God is here - He is present.

Much love to you - 

Dana

Diagnosis Again

Hey y'all - I don't even know how start, except to say that I'm exhausted and this surely won't be my most eloquently written email.

Most of y'all know by now that we got the genetic test results back for Ann Carlyle and Elle, and while Ann Carlyle is in the clear, Elle has Batten Disease.  Seeing those words is still incomprehensible to me even a week later.  

We received the call from our neurologist in the middle of our move to the new house last Saturday evening.  Literally going from directing the movers where to place things (exhausted but excited to finally be in the house), to sitting in the cold, dark grass unable to breathe...

I've been MIA with my communication because, as you can imagine, there just were not enough hours in the days leading up to the move.  But somehow we made it to moving day, even with Milla's condition deteriorating.  She has had a rough couple of weeks.  We had adjusted some of her dosages which seemed to work well for a little bit, but now she is worse.  She isn't eating much at all (except her beloved shredded cheese of course - a left over result from being on the ketogenic diet this summer), she's barely sleeping, her tremors have increased, her seizures seem constant and are bigger (i.e. throwing her around).  You really can't take your hands off of her and even when you have your hands on her, she still manages to fall many times.  She is also less lucid than before.  It's hard to say where one cause of all this ends and another begins.  The disease itself, the seizures, her meds and the side effects from them, her exhaustion from both lack of sleep and the seizures themselves...regardless, it's heart-breaking to see her like this.

And now we face the same things happening to Elle, though we don't know how quickly.  Still exhausted from the move and Milla not sleeping and trying to comprehend Elle's diagnosis, we were trying to relax in front of the tv Monday night when we heard a very weird and unnerving scream from Elle.  Frazer ran back to her room and found her seizing in her bed.  She was absolutely burning up with fever, so when the paramedics got to the house, they advised us to take her to LeBonheur to make sure some bigger infection wasn't going on.  We stayed most of the night at LeBonheur while the doctor ran a bunch of tests and gave her some fluids and IV meds (she kept vomiting up the oral meds).  Fortunately, it looked like she just had a little virus, but our neurologist felt that this seizure was the beginning of the disease becoming 'active' and started her on Depakote (an anti-seizure medicine - Milla takes this also) to hopefully prevent any more convulsive seizures.  Elle will have an EEG Tuesday and we will meet with Dr. Wheless about both girls.

This is about all I can write tonight.  It's been hard to organize my thoughts and/or have the time and energy to write them down.  I do want to say, though, how utterly thankful I am for all of you that are praying...for beseeching the Lord on our behalf.  I am humbled and overwhelmed by the outpouring of prayers and kindness.  I have never in my life witnessed such love from people.

And thank you for all your words, your gracious giving.  You have given so much of yourselves - and God is using you to literally hold us up right now.  We are breathing in and out and just putting one foot in front of the other.  Thank you for helping us do this - I can't possibly express our gratefulness.  

As I've said before, please know that we truly cherish every text, email, phone call, letter, visit that we have received.  Thank you for weeping with us.  I absolutely hate that I haven't been able to respond to everyone but your communication is like manna for us.  Knowing we are not alone is so vital.

I keep playing this song in my car...it's a song from a children's CD and it's a 'child's version' of the Lord's prayer.  As we have been reduced to our knees on so many levels, the simplicity and getting at the root of the Lord's prayer resonates so much in my soul right now...we have to somehow cling to Jesus...

(The CD is Rain for Roots: The Kingdom of God is Like This)

Our Father in heaven, 
Reveal who you are. 
Set the world right; 
Do what is best— 
as above, so below. 
Keep us alive with three square meals. 
Keep us safe from the Devil and ourselves. 
Keep us forgiven with you and forgiving others. 

You are in charge! 
You can do anything! 
You are beautiful! 

You are in charge! 
You can do anything! 
You are beautiful! 

Amen.

(And for those that might not know the Lord's Prayer...

Our Father, Who art in heaven, hallowed be Thy name.

Thy kingdom come, Thy will be done, on earth as it is in heaven.

Give us this day our daily bread and forgive us our debts as we forgive our debtors.

And lead us not into temptation, but deliver us from evil.

For Thine is the kingdom and the power and the glory forever and ever.  Amen.)

Please continue to pray for us - pray for mercy for our girls.  For both Milla and Elle as they are and will continue to suffer with this disease - and for Ann Carlyle (oh how we ache for her little heart and what she is facing).

Please pray for us, that our faith would remain steadfast in the One that knows us and loves us more than we can imagine - and pray that we would remember and know His love.  Pray that our marriage would stay strong and that we remember to be kind to each other.  (We have been warned more than once by medical professionals that these situations tear couples apart.)  Pray that we can get Milla sleeping for her own wellbeing and so that we also can get some sleep.

Much, much, much love - and thank you for 'entering in' with us,

Dana