Lots of Catching Up To Do!

So much to tell y’all about what’s been going on!  Lots of wonderful and lots of hard all rolled into one.

Below is more detail we learned from all our visits last week.  I apologize that it is so long-winded, there’s just so much information to give y'all.  

Before we get to that, 2 things Frazer wanted to share:

 

1 – THANK YOU!  To all that pray, drop off flowers, come to the house at 5:45am, help with the ‘arsenic' hours (5-7pm), send us prayer blankets, drop off meals, send gift cards and provide for us in hundreds of other ways, THANK YOU!  We have not been able to thank each of you yet, but that is a goal we have.  Until then, know that God is using all of you to sustain us. 

2 – During these days that seem dark, we remind ourselves that we move one step at a time and there is Light for each step.  You help us see the Light each step.  We get glimpses from time to time of what will be and at the end of the day, this is what keeps us plugging on: 

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more.² And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. ³ And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. ⁴ He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

⁵ And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” ⁶ And he said to me, “It is done! I am the Alpha and the Omega, the beginning and the end. To the thirsty I will give from the spring of the water of life without payment. ⁷ The one who conquers will have this heritage, and I will be his God and he will be my son.

Last week was incredibly busy.  We met with neurologist on Monday, had a parent-teacher meeting at Ann Carlyle’s school and physical therapy Tuesday, occupational therapy and a meeting with the palliative care team from LeBonheur Thursday, and Ann Carlyle went with us to the grief counselor Friday afternoon.  I also spent the day in Nashville, Wednesday, to pick up some equipment for Milla.  While last week gave us lots of new info on the girls, much of it was difficult.  

This week has had a much slower schedule but it has been an emotionally heavy week.  Milla had a few days of being pretty lethargic after an increase in her seizure medication last week, but then she broke out of the drug fog and had 3 or 4 AMAZING days.  Y’all, she was walking BY HERSELF.  She was wobbly (kind of like when a baby first learns to walk) but she was doing it!  And her seizures were much, much improved as well - most significantly, the drop seizures where her body will fall suddenly and quickly.  She was having such a good time scooting around the house pushing babydoll strollers and riding toys she hasn’t been able to balance on in months.  It was awesome to witness.  (Although all this activity led to a fresh crop of bumps and bruises!)  However, when she woke up yesterday morning, we could see immediately she was starting to slide.  And throughout the day, the seizures came back with a vengeance and her body fell weak again - she was unable to even hold up her head or torso much of the day.  In a way, it is hard to see her get so much better knowing that it is temporary, but we are so thankful that she experienced some freedom from her chains, even for just a little bit.

Also, early in the week, as Frazer was playing with Elle, she had a significant absence seizure…the first we’ve seen and recognized.  Thankfully, her medicine is keeping the seizures at bay right now, most specifically convulsive seizures.  And while the absence seizures are fairly ‘benign’ (no physical harm), it is a reminder of what is coming for her…and us…and our family.  Elle is so bright and energetic and funny and free and so full of personality and laughter and the grief of watching all of that fade away runs deep.

So here’s (the very long) synopsis of all our appointments and meetings…

Neurology Appointment -

Dr. Wheless increased the dose of one of the seizure meds in hopes of decreasing some of her seizures, and he doubled her ambien dose in hopes of helping her sleep a bit better.  He was surprised at the speed of Milla’s digression, which is noticeably faster than we expected, and he predicted her medical needs would greatly increase in 3-6 months.

As for Elle, Dr. Wheless is confident that her current med (Depakote) is preventing many more seizures.  And we learned that she will most likely follow the same path and time-line with the disease progression as Milla has.  Also, Elle’s sleep is plagued by a lot of nightmares (and/or seizure activity - we aren’t sure) so she isn’t sleeping well.  But no changes in her overall treatment at this time.

 

Physical Therapy -

Milla continues to digress and isn’t able to walk independently.  Sometimes she has the strength to bear her own weight but other times, she does not.  We are going to need braces for her feet/legs soon and we can see her motor skills declining week to week.  For the first time, the therapist noticed something called clonus, which is a kind of nerve issue that shows neurologic deterioration.  

Occupational Therapy - 

Milla’s occupational therapist told me about places that consign used medical equipment and while there wasn’t one in Memphis, there was one at the Cerebral Palsy Foundation in Nashville.  So I called them to see if they had anything that Milla could use and they did!!  I grabbed a friend and drove to Nashville last Wednesday (and my sister was able to drive from Birmingham and meet us there!!) and we came home with a stroller/wheelchair, a (pink) bath chair and another (purple) special needs chair (called a special tomato) that is on wheels, close to the ground and it can also be strapped to a regular chair.  Thousands and thousands of dollars of equipment for ZERO dollars that we could pick up IMMEDIATELY instead of waiting 6+ weeks to get through insurance, backorders, etc.  The people that work at this foundation are amazing and wonderful and they are operational solely through donations.  They do good work and help a lot of people.  It was an incredible day feeling God’s provision for us.  

I cannot tell y’all how much the daily activities have changed having this equipment.  Milla can actually eat without us holding her to make sure she doesn’t fall out of the chair and/or slam her face into the table in front of her.  The stroller is table height and has a 5pt harness so it keeps her safe while she eats, colors, etc.  AND Milla loves to sit in it…it seems to provide her with a sense of safety…another answer to prayer.  Also, one of us is able to bathe her now due to her new pink bath chair instead of it taking 2 people.  These things free up my arms and hands (and back) and enable me to care for everyone a bit more efficiently while keeping Milla safe.

 

Palliative Care Team -

Three doctors and a nurse practitioner came to the house for 2 ½ hours last Thursday evening.  They will be a kind of ‘hub' for the girls’ medical care and will be a good resource to bounce ideas off of, to help us understand the impact of decisions we are making and for keeping doctors and nurses on the same page with our wishes and plans for the girls' medical care.  We had a very good meeting with them - we learned a lot and they were very kind.  They have already followed up with answers to a number of questions.  But as thankful as we are to have Dr. Cunningham and her team on board with us, our hearts have been heavy as we are being forced to deal with bigger issues such as hospice care, what that looks like and when to begin that process.  According to Dr. Cunningham, Milla would likely immediately qualify (and possibly Elle too simply due to her diagnosis), but it’s a complicated process and there is much to consider before moving that direction.

 

Center for Good Grief

This is a center that ONLY does grief counseling and they also specialize in grief counseling for kids.  It is a wonderful place.  Frazer and I have been going since December and we bring Ann Carlyle with us every so often so that her therapist can establish a relationship with her and lay some groundwork for identifying emotions, etc.  We are trying to keep a close watch over her through this as she will certainly suffer and grieve greatly over the next few years.  Our hearts break daily concerning this and we constantly wonder what direction to go and how to handle her in light of everything going on, so we are thankful for the wonderful counselors at this center who are helping and loving us through this.

Speech Therapy - 

Elle had her speech evaluation and while she is right on track with what she understands, she is a bit behind on her articulation.  So we are going to start speech therapy with her twice per week and praise God, the therapists are super amazing and accommodating so that her therapy will be folded into the appointments we already have weekly - in other words, no new appointment times to have to get to each week!  

I think that about sums it up (whew)!  There is much to process, much to grieve and much to be thankful for.  Thank you for reading this and praying with us and for us.  We love y’all!

Dana and Frazer

Milla and Elle - sweet-pies, pacis and the iPad - a perfect combination

Elle with Ann Carlyle - lots of sister snuggles lately :)

Elle in her typical fashion

Milla playing with the best toy around...a big box!

The Nashville Roadtrip Crew!

Ann Carlyle wanted Milla to sit in her lap so she could 'read' to her :)

Elle-belle on the slide!

Just like that it’s 2015!

And if I’m being honest, I have to tell y'all it’s been a tough thing hearing 'Happy New Year’ over and over again.  We know that things are only going to get more challenging and scary and hard as time goes by…so finding the ‘happy’ in the new year is, well, tough.  But as I sit here and reflect on just these first 6 days of 2015, we have had so many joyous moments intermixed with all the challenging ones.  Sometimes (all the time), we just have to slow down and consider the good things God has provided.  The simple things in life can be the things that provide the most joy.  

One thing is our fireplace.  It’s true. :)  It’s been 11 years since we have had a fireplace but now that we do, we are taking full advantage…as I write tonight, there is a crackling fire going and it just makes me smile.  

Little things.

And big things.

Elle’s speech and behavior are immensely better…and there is no practical explanation.  She is happy and funny and silly and giggly and is speaking in sentences.  She’s not just imitating words or phrases we say…she is speaking with independent thoughts and language.  She is a delight and we are soaking it up.  

Mercies upon mercies.

Milla’s motor skills and strength are still declining and her seizures are continuing to increase in frequency and severity.  She cannot walk or even sit unassisted.  However, she has been a happy girl.  Lots of giggles and and a good bit of silliness.  And lots of snuggles and hugs.  Our Milla has never been able to say ‘I love you’ but she shows us her love every day and I know she understands our love for her.

And Ann Carlyle is doing really great.  She has had the time of her life during this Christmas break.  So, so much fun with friends and cousins, sleepovers, horseback riding and a mountain of doughnuts.  :)  She is happy and content and her compassion and love for her little sisters grows daily.  

So while we face unspeakable heartache and challenge in this new year, we will remember God’s love.  We will remember that we will run and not be weary…we will walk and not faint.  We will remember that God is a merciful God and we will make daily choices to see the joy and to remember our Jesus, the Son of God, that came to earth as a baby, to live among us, to mourn with us, to suffer, so that we may have life in Him.

I read this months ago (I can’t even remember where - I’m pretty sure one of you wonderful people sent it to me), but I wrote it down to remember the truth within:

"Do you fear difficult circumstances? You need not fear. The Lord reigns as king above every circumstance. Obedience to him may require that you go through hard times that seem to have no reasonable explanation or way through them. His path may seem to lead you into quicksand, but you will find that underneath is solid rock, a place of true security.”

When the fear threatens to undo me, I will remember that He already knows what will happen tomorrow - no need to be afraid.  

We made the trip to Birmingham for Christmas just fine - the girls did well in the car and the sleep while there was normal (well, our normal).  Thank you for praying for these things!!  We had a wonderful time with my family and then came back to Memphis to spend some time with the Gieselmann clan.  All 4 of Frazer’s siblings were in Memphis, so we had a crazy but great time with everyone.  20 kids all together!!!

And so we are back into the swing of things this week with school and PDO and work and so many appointments.  (Frazer is just getting over the flu and thankfully the girls and I are still healthy!  Please continue to pray for health!)  We had Milla’s swallow test today to make sure she wasn’t aspirating any liquid or food into her lungs.  She didn’t fully comply with the whole test but we got her to do a little bit…more than I thought we would get out of her.  She is not aspirating at this time, but she came close so we will start using a thickener in all of her liquids.

We have Elle’s speech evaluation later this week, an appointment with the girls’ neurologist next week as well as an appointment with another doctor who specializes in palliative care.  (And then all the other regular appointments like physical therapy, occupational therapy, etc.)  I now consider myself a professional waiting-room-waiter.  

Thank you to you all who are diligently praying for us and for you all who are physically helping us get through each day!  We have people helping us get just a little extra hour of sleep in the morning as well as people at the house all the time to help us take care of the girls or babysit while I go to the store or while I take one of them to an appointment.  We have dinners coming faithfully and fresh flowers that help make my house a home.  We have seen an truly unbelievable amount of generosity and sacrifice in every aspect.  The goodies for the girls (and us!) and help financially and gift cards to restaurants, etc…our cups runneth over.  :)  THANK YOU THANK YOU THANK YOU.

Much love as always,

Dana

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

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!)

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

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.  Wonderful, amazing, 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.