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