Sunday, December 21, 2014

Some Weekend Fun!

Look who came by our house Saturday to surprise the girls!!!  

Ann Carlyle was so, so, so excited!  It was a fun little bit for our weekend.  :)

Santa group picture!

Milla with her Poppy and her Daddy

Thursday, December 18, 2014

A Little Sunshine and Christmas and Pictures!

So I have a good reason this time for not writing for a bit...

We’ve had a little vacation!  (And by little, I mean big and awesome.)

Some sweet friends from Nashville gave us a vacation to the Bahamas(!) for a week.  Not only did we get to stay in an amazing villa right on the water, but we ALL 5 got to go with 2 amazing friends to help us and we got to fly in a private plane down there!!  We are now forever spoiled to this way of traveling.  :)

The bright but deep, electric blue-green color of the water off Exuma Island is indescribable and cannot truly be captured by camera.  All week, we sounded like broken records, so astonished at the water and how it didn't look real.  And clear…clear as can be down to the bottom…until you reached the ‘drop-off’ where the water then turned a deep, dark navy blue but that was still as clear as can be.  I always marvel (with a little fear thrown in there) at how vast and deep the waters of the ocean are - watching the huge swells - and it truly takes my breath away sometimes.  How much more vast and deep is the love of our Savior, oh my soul??

We swam, we built sand castles and dug holes to China, we kayaked, we boated out to swim with huge turtles and play on an isolated little island with a beautiful stretch of beach, we relaxed and enjoyed just being in a different (and amazing) new environment.  And Frazer and I got to have more dates than we have in 6 months? 9 months? A year?  Regardless, we could not be more thankful to all those who enabled us to go on this trip and for Kathy and Reg for coming with us and working (like dogs!) so that we could enjoy this time.  And I credit them for all the photos - they were our own personal paparazzi - so instead of us having a handful of pictures from our last day of vacation (which is the norm for us), we have hundreds and hundreds and hundreds of pictures.  A treasure, indeed.

It was all truly wonderful, even as we dealt with sleepless nights, a noticeable decline in Milla’s motor function and an increase in her seizures.  The seizures continue to be stronger and longer.  And perhaps the hardest part to stomach right now, Milla needs a lot of assistance to walk most of the time and really is too weak to even stand unassisted for more than a few seconds.  We also see her attention and lucidity rapidly declining.

But in spite of it all, Milla loved being at the beach.  All 3 of the girls did!  They are all beach-bums and come by it naturally.  :)  Being in such a beautiful place is good for the soul…marveling at God’s creation and watching the girls enjoy it as well.

It’s been tough being home this week as the reality of our situation sets in. (Not to mention...why is re-entry back to regular life always so hard?!)  We had an appointment Tuesday to get Milla measured for a walker and wheelchair.  When we made the appointment, I thought we were being proactive and would have things in place well before needing them, but we are now just hopeful that the equipment gets to us as soon as possible as Milla already is very-much needing the walker.  (We are still waiting for her helmet to come in.)  Please pray for this process.  We have to get approval from our insurance company before the equipment can be ordered and then the pieces are custom-made for her.  With it being the holidays, these things (that usually aren’t super quick anyway) could be delayed a bit.  Also, please pray for compliance from Milla to use these things.  I think if she actually will use the walker, she will be so much happier as it will give her a bit of independence in getting around.

And Elle - we are seeing changes in Elle intensify as well.  Praise God she has stayed seizure-free but I feel her speech is actively declining day by day.  And due to this and the disease, her frustration level is high and her behavior is…challenging.  She is yelling/screaming about everything it seems, all day long.  She’s always been a pistol (and she’s 2yrs old) but we saw this kind of behavior in Milla last fall/winter and it’s a heart-wrenching reminder of what is to come for her.  She is also up 3-5 times a night (although, thankfully, once we check on her, she goes right back to sleep).

Sleep is definitely a challenge in our house these days.  And I love my sleep…I neeeed my sleep.  But I’m finding that God is sustaining me even in this way.

But it’s been tough and seems too much to bear sometimes.  Every single thing is a challenge.  Some days, I feel like I’m figuring it out and can manage but then I get thrown right back to my knees, begging God for mercy and and begging Him for strength to make it through the next hour (or even just the next few minutes).

Ann Carlyle is a trooper through it all - and is a great little helper.  She complains about her own chores she has to do but never really complains about helping me with her sisters.  I see her struggling in some ways, like needing more snuggles and attention but she really is doing well.  She loves school and is excelling there.  We have also started grief counseling with her and she did very well interacting with her counselor.

Please continue to pray for us and for wonderful memories to be made in the days that we have all together.  And practically, please pray that we can figure out what we need to do about our childcare/help situation.  I am struggling to know what we need right now, what we will need in the near future, etc.

Please pray for general health for all of us.  Frazer just got over a bout of strep throat (crazy miracle that no one else got it!).  ’Tis the season for lots of awesome germs.

Please pray for Milla’s muscle-control and eating.  She hasn’t had much of an appetite for awhile now, and we are trying to find ways to sneak in calories.  Also, we are having a speech consultation this week to discuss adding thickener to her liquids as she is starting to choke here and there when she is drinking.  (This is another side effect of losing control over her muscles…she will have trouble swallowing.)

We are planning to travel to Birmingham next Wednesday to spend Christmas with my family - please pray that the girls will travel well in the car and that sleep will be okay while we are there.  Pray that it will be a time of joy and even a little relaxation and that it will be a drama-free weekend.

Pray that all of our hearts will bask in Jesus - that we will remember that He became man and sacrificed everything so that we would have life with Him. A life free from sin, sickness and sadness.

I was reminded this week about Christmas and light and darkness…that Christmas means nothing if it doesn’t start with darkness.  Jesus was born in the dark.  He was resurrected in the dark.  God perhaps does His greatest work in the dark.  When the world couldn’t see its hand in front of its face, He showed up.  And this week, to be honest, it’s been pretty hard to see my own hand in front of my face.  It’s been dark - so very dark.  But praise God for the hope I have in Him.  Praise God that He is the victor - not sin, not sickness, not sadness.  

Jesus, stay close to us during this holiday season.


Much love and joy to y’all and Merry Christmas!
Dana
(Sorry some of the pictures are small - I'm technology-challenged.)
Our plane - and, yes, that is my car pulled up right next to it.

The views from the plane were UNbelievable.  I mean, have you ever?!

The view from the pool - again, have you ever?! 

Our sassafras Ann Carlyle loving every minute

Me and my Milla

Elle-my-belle

Frazer and Milla

Big smiles from Milla - this was a small moment was our Milla completely free from her disease

Wrestling with Daddy!

A sweet moment captured between Milla and big Sissy

Swimming with turtles!

This was that stretch of beach on a little island we boated to.  No photoshopping, no filter, no nothin'...just natural awesome-ness.

Sweet Milla and Elle taking a snack break. 

Ann Carlyle enjoying a sunRISE.  :) 
A cool place we called, The Point, at the tip of the island that we visited a few times - the crashing waves were AMAZING and beautiful and we could've watched them for hours.

Elle flying high at sunset!

Milla-willa showing off her digging skills (that sand, by the by, is the softest sand you've ever sunk your toes into)

Frazer, Milla and me taking a walk
Our dear friend, Kathy, that came with us - we adore her - obviously.  :)

Our other dear friend, Reg, that came with us - we adore him, too - obviously.  :)

Frazer and Elle selfie!

Flying back to Memphis

Merry Christmas to all!  (Small and kinda blurry but, hey, everyone is looking at the camera!)

Sunday, November 30, 2014

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



Sunday, November 9, 2014

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

Wednesday, October 15, 2014

Seeing God's Hand

Wow - so much happening these days!

I'll start with the great news...we got our closing for the new house pushed back a week!!!  This is GREAT because the new house will not be ready to move into by next weekend.  We've been stressed about it all coming together in time for the move next weekend and now we have a whole extra week!  

We've had things go wrong seemingly everyday but then the Lord provides amazing things every single day as well.

We have had such an outpouring of help and support - it is humbling and wonderful and although I am brokenhearted by Milla's diagnosis and so apprehensive about getting results back from the other 2 girls' test, I see His hand moving and providing for us everyday and I truly do not feel abandoned by God.

So we took the Ann Carlyle and Elle to LeBonheur last Thursday to get their blood drawn to send off for the genetic test to see if they have the same disease as Milla.  And while 3 of us still had to hold Ann Carlyle down, she did way better than I thought she would (thank you for the prayers)!  And Elle was pretty oblivious most of the time (and she's the tiniest little wisp of a thing) so she was a much easier patient.  Their tests should take 4-5 weeks to get the results.  It's excruciating to wait and wonder and worry.  I try to keep it on the back burner and not think about it much, but of course, it's on my mind a lot.  Yet another reason I am glad to be so busy with the renovation and moving.

Also last Thursday night, someone broke into the new house and took all the faucets for the kitchen and 2 of the bathrooms, some tile and a huge bag of coats and fleeces, etc that I had taken over there back in August in order to de-clutter before listing our Midtown house.  (I thought we would be in the new house well before it turned cold outside - crazy me!)  Needless to say, we were pretty discouraged.  Fortunately, they didn't take some other things that were there (and un-installed) like the stovetop, toilets, a pedestal sink, etc.  So it could've been a whole lot worse!  But still super discouraging.

HOWEVER...while all this was happening over the weekend, we also had people providing so many things for us.  Wonderfulamazing, everyday things like food and picking up things at the grocery store and childcare (aka lovin' all over the kids like crazy) and of course, prayers (treasured, so treasured)...but also a place to stay should we need it if we have to move before the house is ready...a cleaning service for the new house after all that construction (which it desperately needs)...help with the yard...help with picking up Ann Carlyle from school so Milla can nap longer if she needs to...a packing service to come pack EVERYTHING...moving expenses taken care of...and even a lifestyle photo shoot for our little family!  And so, so, so many offers to help wherever it's needed.

I'm leaving out a ton of things, but I'm telling y'all, every step of the way, God keeps saying, "I am here.  I am with you.  And I love you."  He has seen all these little worries and desires in my heart which I haven't even prayed about (just worried about) and provided for them directly.  He is using y'all to show me that He is with us and providing for us...over and over again.  God is good and He is kind and He is merciful.  We so desperately need these reminders in our lives - every day - multiple times a day.

Milla had a couple of good days last week but she isn't doing so great this week.  We see her symptoms slowly getting worse, mainly her walking and lack of steadiness, all-over weakness (she has trouble holding herself up at different times in the day) and being zoned out (and of course, her seizures).  And this is typically how her disease progresses...things will get worse and then plateau and/or she'll have some good days and then get worse again, etc.  It's a brutal disease and we are still trying to wrap our heads around all this.  Dr. Wheless changed up her med dosages today, so we will see if that helps anything.

So please continue to pray for our hearts - we are still trying to process all this (but also feel like we don't even know how in the world to process it).  We feel numb at times and other times feel every possible emotion.  As Frazer says, there is just no context for this.  It is a discipline we have to practice to take one day at a time and a discipline to say, God loves us - and our hearts will choose to say, I will trust You, God.  Like I've said before, there is nowhere else to run, nowhere else to hide...there is only the cross.  There is only the fact that I'm a sinner saved by grace - saved by Jesus' death on the cross and resurrection.  He has triumphed over sin and disease and death.  He will make us whole.  And until that day, He will sustain and provide and give us a haven where we can hide and rest while the storm beats against us.  

A friend sent this to me last night -

"One or two realities will always be true...Jesus will either extinguish my fear or hold me in the storm, and in both cases, my chant is clear, my confidence in singular...He has overcome!  Peace is not a feeling.  It is a reality you come to know when trembling in the arms of the One who is peace.  Peace is a person."

We don't feel like everything is 'okay' but we feel Peace. 

I have told many of you this - knowing we are not alone is helping us in ways I just cannot express.  So again, thank you for emailing, texting, calling us - for helping us and hugging us and telling (and showing!) us you love us.  For praying so faithfully and sending us the word of God to encourage us.  Thank you for hurting with us and crying with us.  My cup runneth over.  We are so, so thankful for you.

Much love from the Gieselmann 5 :)
Dana

PS - Know that every single word that any of you have sent has been stored away in my heart.  I hate that I haven't had the time to respond to every email or phone call but know, please know, that we treasure every word.

And PPS - I am going to make the blog public so now anyone can get to it.  It is thegieselmann5.blogspot.com.  And if anyone wants to be on the email list, feel free to let me know.

Tuesday, October 7, 2014

Diagnosis

Hey y'all - we amazingly got a call this afternoon that Milla's genetic test results were back and Dr. Wheless wanted us to come in to meet with him.

We found out that Milla has Batten Disease.  This diagnosis basically confirms what we already had learned from Dr. Wheless last week - Milla will continue to lose skills and abilities and her health will decline and we will lose her at an early age.  We feel our hearts are laid open all over again tonight.  

Please pray for our little family - we also learned that there is a possibility that the other 2 girls could have this same disease.  It is a blood test and we will most likely have them tested sometime in the next few days.  We don't think the results will take as long as Milla's took, as they are looking for one specific thing.  We are pleading, pleading for God's mercy.

We love you all -
Dana

We sang this song at our wedding...we knew life wouldn't be easy (it never is)...but we never could have imagined this kind of sorrow.  But I know my Savior loves me, loves Frazer, loves Milla, loves Ann Carlyle, loves Elle.  Our circumstances may change but He does not.  He loves us with a love that cannot be measured and so I will hide there tonight.  

When peace like a river, attendeth my way,
When sorrows like sea billows roll...
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

Pictures

A little bit of cuteness when Daddy was at the hospital

Going home!

She looooves her sunglasses

This was their first day of PDO in August - Elle's bag and lunch box are as big as she is but she INSISTS on carrying them herself.  :)

My silly goose Ann Carlyle



Monday, October 6, 2014

One Foot in Front of the Other...

How thankful we are to have you in our lives...to pray for us and to love us.  Thank you for helping us through the last few days and for helping in the days ahead.

We wanted to write and give y'all a little more detail of what is going on with Milla - although we still don't know a lot.  

Milla's brain is degenerating and will continue to do so, short of God healing her.  We continue to wait on the genetic test results that will give us a specific diagnosis that can help with her treatment plan and can offer a little bit of a clue to what this will look like in the months and years to come.  We do know that her treatment plan will consist of treating her symptoms and keeping her as comfortable as possible - there is not a cure that we are aware of.  If the genetic test shows nothing, Dr. Wheless will do a biopsy of some skin (from her armpit) and a biopsy of her brain to gain some information to help him diagnose her.  We expect to have the genetic test results back by the end of the month.  If we have to do the biopsies, she will be in the hospital for a couple of days and those results will take about 10-14 days. 

Even though we don't have a specific diagnosis at this point, we know that as her brain continues to degenerate, she will lose abilities that she once had, such as walking and talking.  We don't know how quickly this will happen, but at some point, the brain will stop supporting the essential bodily functions.  Dr. Wheless said this can happen from childhood to adolescence to early adulthood, so we do not have a handle on what the 'long term' is for Milla.

We are still in a bit of shock trying to process all of this - in a fog of grief and disbelief - but basically, just putting one foot in front of the other right now.  We have work and 3 little ones and a house being renovated and a move in 19 days.  So our emotions swing back and forth from heartbreak to being on-task and everything in-between.

As far as how Milla is doing right now...the good news is that her screaming 'neuro' fits have dramatically decreased.  I'm not exactly sure why but we are thankful.  

Her instability, however, has increased a good bit.  Her gait is very unstable, any little thing makes her trip so, of course, she is falling a lot.  She is unable to walk in a straight line and her movements are very jerky.  It hurts our hearts so much to see her struggle with this, as she so desperately wants to run and jump and play.

Her bouts of being out-of-it are also on the rise.  I'm not sure if it is due to lethargy from her meds or if it is just her neurologic condition.  Dr. Wheless said he really didn't see any absence seizures while we were at LeBonheur, so I'm assuming it isn't seizure activity.

On a positive note and in spite of everything, we (and her sisters) are able to fairly easily draw a smile or giggle out of Milla these days.  And both Ann Carlyle and Elle have been showing a tenderness towards Milla that I have not seen before.  It is so amazing to see Jesus coming out through them as they have compassion on Milla.  It is truly the work of God and brings me such joy.

And so it is - I am finding joy in and am thankful for the abundant blessings that God has given us everyday, most of which we often take for granted.  I question why Milla has to suffer this path but I do not question God's goodness or presence because I know it to be true - I have experienced it and seen it time and time again.  I have felt a sustaining grace as I move through my day - just when I think grief might completely overtake me, He pulls me out of the mire and sets my feet on a hard place.  When I think of the days and years ahead of us, I become almost paralyzed with fear, and I have to remind myself of the mercies He promises that are new every morning.  I have to remember His faithfulness, His love, His goodness, His death that brought me life.  I don't know how else to walk this road.

I will sing praise to God, He has lifted me up.
He heard my cry for help, and has filled my cup.
His mercy extends for a lifetime; His grace gives me strength each day.
My soul shall sing His praise, forevermore.

Please continue to pray for our hearts - that we will find our strength and sustenance in Him.  That we will be given the grace to do this.  We find ourselves so wrung-out and wondering when we are we going to get to stop living in 'survival mode.'  Please pray for our ability to care for Milla and also for the wisdom to do so as we make medical decisions for her.  Please pray for Ann Carlyle and Elle - that God would continue to cultivate tenderness and compassion in them that they will also have for others as they go through life - and that He would draw them close to Himself.  Please pray for wisdom for us as we will be talking to Ann Carlyle in the coming days about Milla's condition.  And please pray for our sweet Milla-willa...pray for a miraculous healing...but if that is not God's path for her, that He would be merciful to her and that He would draw her heart to Himself.  And on a practical note, please continue to pray that the new house will be ready in 19 days, that the closing will happen without incident and that the packing and the move would go smoothly (as smoothly as moving can possibly go!).  Just a couple of little prayer requests. ;)

Thank you for suffering with us through this - there are no words to tell you of our thankfulness for you all.

Much love,
Dana

Friday, October 3, 2014

Home

We came home from the EMU last night with Milla.  We met with Dr. Wheless and the MRI showed that Milla's brain is not only not growing, but digressing in growth. There is still no diagnosis as we are waiting for the genetic tests to come back in the next month to shed some more light on her condition.  Dr. Wheless is hopeful for a diagnosis through the genetic test but if the test does not show anything, we will most likely need to do a biopsy.

Even with no diagnosis, the digressing brain growth seen in the MRI, the lack of development we see day to day and the seizure activity are not good, long term, for Milla.

We are burdened and our hearts are heavy.  Please lift our family up in prayer.
Frazer

Wednesday, October 1, 2014

LeBonheur Day 2 - Moving Right Along!

Hey y'all!

So last night wasn't so much filled with sleep...I told some friends earlier today, I like to refer to is as rest-time.  BUT, the good news is that hopefully tonight will be a bit better (not only because we will be so completely exhausted from lack of sleep) but because Milla her EEG leads taken off around noon!!  Yay!  Dr. Wheless felt like he got all the EEG data he needed, so he didn't see any reason to keep her wired-up and uncomfortable.  Milla and I are both very grateful for this respite!   :)

Dr. Wheless also confirmed our suspicions, that Milla is having a new type of seizure...atonic or 'drop' seizures.  These seizures make the body's muscles relax so they cause the person to fall.  Some falls can be 'graceful' - like a gradual slump - but some can be falling plank-style.  The plank-style ones are pretty scary as she falls fast and hard.  Fortunately, we've seen few of the plank falls, although during her physical therapy evaluation today, she had 2 in a row.  Fortunately, between me and the therapist, we caught Milla both times before her head hit the tile floor.  I was not encouraged to see her have those falls basically back-to-back but it might have been due to her exhaustion from a bad-night's-sleep, lots of activity this morning and it was well past her normal nap time.  Please pray that these seizures don't become her new normal!

Some of that morning activity I just mentioned was her neuro-psych evaluation.  I don't know the results yet, but she participated well without me having to be present.  The psychiatrist will come by tomorrow to give me the preliminary results and we will get a full-scale report in about a month.

And, as I mentioned before, she had a physical therapy evaluation to see if she needs this therapy regularly on top of occupational therapy.  And the answer is yes.  She will have a more extensive evaluation out-patient and then based on that evaluation, they will tell us how often and how long physical therapy is needed for Milla.  Unfortunately, it will not be where she has speech and occupational therapy, but I'm praying we will have wisdom on how to fit this into our weekly schedule.  

Sidenote: You know, I've been meaning to tell y'all that God really answered our prayers for Milla's therapy schedule back a month or 2 ago when we started it.  I had asked for prayers that her therapies would be back-to-back and that God would provide for Elle as well as I knew one of those therapy days would be 1 ½ -2 hours long (and we weren't sure if I would be needed in the therapy for Milla to participate).  And it all has worked out so wonderfully!  She does her therapy without me in the room.  She goes to speech on Tuesdays for just 30 minutes, so it's fine for Elle to come along.  And on Thursdays, her therapies are back-to-back and a dear friend (who already has her plate FULL), takes Elle with her (and her 3 littles) to Bible Study...and then graciously feeds her lunch as well and shows back up with her at my house just in time for nap!  All that to say, God has completely and utterly provided for that little request of mine and has made it 'easy' for us to do every week...easy in the time of day as well.  He is good!

Milla's MRI is scheduled for first-thing in the morning - pray for an easy IV stick and a smooth procedure.  Pray that it will shed some light on what is going on with her as Dr. Wheless is still in the dark about what is happening with Milla and is hopeful this will provide him with some direction.

Thank you, thank you, thank you for your prayers, your encouragement, your hugs, your help, your support...just being our extended family through all this.  I feel that I am standing on hallowed ground through all this.  God is ever-present and we see Him constantly.

I was reading a friend's blog today and she included the lyrics of 'Come, Ye Sinners' - a song I love and have written out in 1 or 2 of these Milla updates myself.  But a couple lines stuck out to me this day...
View Him prostrate in the garden;
On the ground your Maker lies;
On the bloody tree behold Him;
Sinner, will this not suffice?

He suffered.  He wept.  He plead for that cup to be taken from Him.  He died for me, for Milla, for you.  

He knows our pain, our heartbreak, our cry for mercy.  And He also knows how many hairs are on our heads.  Amazing.  As a sweet friend reminded me the other day, God knew Milla and His plan for her as He was knitting me together in my mother's womb.  Just think about that for a minute.  Let that sit with you - God, our Creator; God, Who became man; God, Who knows our suffering because He too suffered and wept; God, who gave His life for us.

This is my hope.  This is my song as I am feeling anxious about tomorrow and the MRI - praying for answers and for mercy in those answers.  Oh the deep, deep love of Jesus...
Dana

Tuesday, September 30, 2014

LeBonheur - Day 1 (again!)

Quick update while I've got a second...

It's been a good day - I was so excited that we got hooked up to the EEG THIS MORNING around 9:30, which has never happened in our previous LeBonheur visits!  In April, it was around 5pm and in June it was 9pm...so I feel like this day has actually been useful this time around.  And she has been seizing 'nicely' all day so that's useful too.  :)  She also had some blood drawn this morning to check her drug levels and some other blood levels - just routine. (Again, so thankful this happened this morning and not in the middle of the night.)

Also, a huge awesome blessing...our room.  In April, we were in this same room and had an incredible view of downtown, including the pyramid, bridge and incredible sunsets too.  The pyramid was, by far, Milla's favorite thing.  She looked at it all the time, told everyone else to look at it all the time and was constantly asking about it when we were here in June and were on the opposite side of the building.  So I sheepishly asked our dear friend, Tim Flack, who works here at LeBonheur as a family advocate, to see if we could possibly request this room.  And we got it!!! Thank you, Tim!!!  She is again looking at it all the time, telling everyone else to look at it, and at nap time when I closed the blinds, she asked me if she could see the pyramid one more time before she went to sleep.  I mean, melt my heart.  It gives me so much joy to see her so happy to have the pyramid back in her life.  :)  

Tomorrow, Milla will have a re-evaluation with neuro-psych.  She was evaluated in April and didn't do so well.  But the results were also somewhat skewed as she was seizing so much, it was late in the afternoon, and we had already been here for 3 days.  She was re-evaluated to a certain extent through occupational therapy but I think the neuro-psych one is a little more extensive and is evaluated by a psychiatrist.  So this is a good thing.  Dr. Wheless wants to see her progress (or lack of) and make sure she hasn't digressed as well.  And the evaluation will be happening tomorrow morning when she is the most energetic, etc.

Thursday, she will have an MRI.  Kind of like the neuro-psych eval, Dr. Wheless is  looking to see if her brain has had no change or has gotten worse (last MRI showed no brain growth from the previous MRI 6 months prior).  Best case scenario is obviously that her brain has grown but he seemed like he would even be somewhat okay with it having no change.  I'm planning on asking many questions about all this once he has the MRI in his hands...don't know a lot at this point.

Dr. Wheless also mentioned the genetic test we had to have redrawn a few weeks ago as he's pretty anxious to get those results.  The lab that processes this test recently told them that their turn-around time is much shorter than it used to be and the max waiting time should be 8 weeks.  I believe it's been 4 weeks since it was sent out...it's nice to realistically hope for answers in the next month.

So it's been a big day for Milla - I'm so thankful to have gotten so much 'done' this morning.  The previous 2 visits, we've literally sat around all day long with no EEG, no lab done, etc.  Just twiddling thumbs.  Today felt very productive.

Thank y'all for praying!!  I feel like God is already answering so many prayers!!  And I feel encouraged.  :)

"Come to Him, then, poor heavy-laden sinner, 
Come needy, come guilty, come loathsome and bare;
You can't come too filthy - come as you are."  (For He loves you so.)

Much love!
Dana

Monday, September 29, 2014

Game on!

Hey y'all!  I wanted to send out a quick email tonight...

First of all, thank you, thank you for the prayers for our inspection.  It went very well!!  We have the appraisal tomorrow and then I think we are out of the woods until closing!

We go into LeBonheur (aka "The Heart" as Milla calls it) in the morning - please pray for our time there...
Pray for her to have the seizures that she needs to have that will give her doctor the information he needs to help her.
Pray that the MRI is helpful for him as well.  
Pray that we can get a handle on why all this is happening and what we can do to help her.  
Pray that she will be able to nap well while we are there and that both of us will be able to sleep well at night.  
Pray for the other 2 girls who will be spending the week with 2 sweet families...that they will have fun and will be okay being away from us and their sisters.  
Pray for those families as well as they are taking on an extra child all week - that's never easy!!
Pray for everyone's health.  I had a fever virus over the weekend and Milla woke up with fever early this morning.  But she seemed better this afternoon so hopefully she got a mild form of the virus.  Pray no one else gets it!!

And as if things weren't crazy enough, my knee filled up with fluid today - even though I spent the last couple of days in bed!  I had it checked out and drained and I'll go back to get it re-checked in a couple of weeks.  It could be torn cartilage and if it doesn't get better, surgery (fortunately, minimally invasive) could be a possibility.  Please pray that this will resolve.  I'm not sure how to squeeze in taking care of my knee while taking care of Milla's needs, taking care of the other 2 girls and packing up and moving houses. ;)  

I am so thankful we have a God who is bigger than all of this, a God who loves us more than we could possibly fathom, and a God that has sustained us and provided for us all along the way and we know He will continue to do so.  

Know that God has also used Y'ALL to sustain us and provide for us.  We are so, so, so, so grateful for you.  I praise God for you every.single.day.  I am humbled and in awe of the love you show us.  And you have taught me how to truly love others.

Much love and thank you for praying!!!
Dana (and Frazer)

Tuesday, September 23, 2014

Mercy Being Poured Out...

I'm so thankful to tell y'all that Milla is doing a bit better this week!  Thank you again and again for your prayers.  We have seen God's mercy poured out...the contract on the house, the improvement in Milla's seizure activity...

Specific prayers that we had for Milla and that I wrote about to y'all have been answered.  Her seizure activity has decreased and she has been happy and energetic!!!  (This is also getting her in trouble a lot - but thankful nonetheless.)  Thank you for praying with faith - for praying for miracles.  She is still falling a good bit and not sleeping well and definitely still having seizures but there is such a huge difference this week.  God is good.

Also, more mercy...the people buying our house agreed to push the closing date back a bit so we could have a bit more time to get the new house ready.  We will close Friday, October 24th AND they are giving us the whole weekend to move - we don't have to be out until Monday, the 27th.

I'm sorry I haven't been able to write everyone back that has written - but THANK YOU for staying in touch with me, giving us wonderful and wise words of encouragement, for yummy meals, for helping with the girls, for your offers to help, for filling up our hearts.  Thank you to those of you that we don't know but are praying faithfully nonetheless.

Please continue to pray as we have our house inspection Friday morning and will go into LeBonheur Tuesday.  And then we pack.  My oh my.  

Much love - and wow - just thank you again.  Praise God from Whom all blessings flow...let all creation praise His name.
Dana

Wednesday, September 17, 2014

WE HAVE A CONTRACT!!!!!!

Yes!! We have a contract on our house!!!

I was talking to my mom and couldn't even put it into words, so I know I won't be able to here either, but I KNEW there were countless prayers being lifted up for us and for this house to sell, specifically yesterday.  I felt God's presence on the day.  It was His time and He was moving.

The crazy thing is that our realtor told us he had never, ever sold a house off of a realtor luncheon (which is what was happening yesterday) - it's like an open house for realtors, but with a huge meal.  An agent that attended the luncheon left to go get her client to show her the house. That client loved it and came back with her husband last night and they submitted an offer this morning.  

Crazy, I tell ya.  But God likes crazy.

So thank you for praying so fervently!!  Please continue to pray that the inspection goes well (that's always a big hurdle) and that all will be well until we actually close.  (We aren't sure when closing will be yet - it will either be the middle or end of October...but not September 30th!!!  Yay!!!)

Thank you for praying that this burden be lifted from our shoulders.  My cup runneth over.  :)

Dana

Monday, September 15, 2014

Please Continue to Pray!

Hey y'all - we are praying fervently for God's mercy to fall on Milla.  Each day seems to be worse than the day before.

Milla's seizures have reached staggering numbers - 500-600+ per day during the hours she is awake.  And we are seeing that she is most likely having seizures in her sleep as well.  She is waking up early from napping and during the night seizing.  We are hopeful that the seizures are what is waking her up and that she isn't just seizing constantly in her sleep.

Also, another problem has developed at night - she is sleepwalking.  After finding her downstairs at 3am the other night, we put a gate up at the top of the stairs but there are still issues.  She got into a tube of anti-itch benadryl cream and squeezed out every bit all over herself and the bathroom before we realized she was awake.  (I'm so thankful she didn't think it was toothpaste and ingest it!)  She is spending large amounts of time awake in the middle of the night, getting up, playing in the bathroom, etc., which just exacerbates seizures and her exhaustion.  It's scary because we don't always hear her initially and she isn't really awake and 'with it' so I have no idea what she is going to do.  She shares a room with Ann Carlyle so we can't lock her in her room due to Ann Carlyle needing to be able to get to the bathroom.  She is big enough to climb out of any crib or pack-n-play as she will be turning 4yrs old in November.  There are big obstacles to every possible solution we can think of, especially in this house.

Her days are also fraught with danger.  She is seizing so frequently and is so unstable and so lethargic/sleepy and out-of-it.  Even if I am holding her hand, she is falling frequently and hurting herself.  She is tripping over her feet much of the time as well and I assume she isn't seeing well either - possible blurry and/or double vision.  

Her screaming fits continue to be very frequent - she gets so frustrated and is miserable so much of the time.  She needs me to hold her much of the day because she is so weak from everything (seizures, lack of sleep, meds, not eating much at all).  This is also hard on sweet Elle, who is just 2 ½ yrs old.  My heart breaks for her as I can't care for her like I long to do because of Milla's constant needs.  I truly need more arms and hands.

Another problem is that Milla is way to bold and independent for her own good when she gets a burst of energy.  She will run really fast (falling - or nearly falling - headlong into a hard surface) or sprint to the stairs or decide to go to the bathroom on her own.  Today, I spent the better part of an hour cleaning up a rather large bowel movement from her entire body and much of the bathroom.

Her doctor has put Milla back on the depakote (the one we had taken her off of a couple weeks ago due to her lethargy).  He hadn't wanted to medicate her too much before our upcoming stay at LeBonheur, but we also have to keep Milla safe until then.  Too, we are slowly increasing the onfi medication, but we have not seen any decrease in her seizures - only an increase in the lethargy again.  Needless to say, she will definitely be admitted to LeBonheur on the 30th, most likely for the whole week.

I cannot express how discouraged we are right now - and we feel such deep, agonizing grief over our precious Milla and her suffering.  We have pleaded to God for mercy - please pray with us for His mercy and protection.  I've said this before, but I say it even more so tonight, there is no hope but our hope in Him.  It is absolutely the only thing we can cling to.  Please pray that God renews our faith day by day, moment by moment.  

The 'new' house is coming along well and we continue to pray that God brings us a buyer soon for our Midtown house.  We would surely welcome the weight of this house off of our shoulders.

Thank you for your love, prayers, meals, cards, flowers, gifts, emails, phone calls, texts, offers to help us - I cannot tell you how much it sustains us to know that we are not alone in all this!  You are truly the hands and feet of Jesus to this family.

Much love,
Dana