Pictures!

Milla with Poppy (Frazer's Dad) 

Ann Carlyle and Elle jumped in the pool no less than 5634 times while in Florida

Sisters in the surf

She is a FISH.

Lots and lots of jumping

Building sandcastles together

More smiles from Milla!

Sweet hugs with Ann Carlyle and Milla

Let the Easter Egg Hunt begin!

Milla

Milla Wild-Hair Gieselmann

Selfie with Daddy and Elle

Selfie with Daddy and Milla

Date Night in Miami's South Beach!!!

SunRISE!

Dinner on the water

Sunrise - Me and Elle

The Pier - Khaki (Frazer's mom), Elle, Frazer and the Pelican

Frazer and Ann Carlyle - can't keep them off the beach!

Me and my sister, Dawn

Ann Carlyle - big smiles the whole week long

Milla-willa being a silly goose

Love that smile!!!

Look how close they got to the pelicans!

Happy Birthday, Ann Carlyle!!!

More Milla-smiles

Spring Has Sprung

So I know it’s been a while since I’ve sent an update…

Thank you, everyone, for continuing to pray for us and for asking about us and for taking care of us (meals! childcare! etc!) - even during the long radio-silence!  We have an ARMY wading through the mud with us - each and every one of you are treasured.

A couple of weeks ago, as I was feeling so overwhelmed and scared, a friend sent me something that Elisabeth Elliot said to her daughter - “just do the next thing.”  And this is what we do…the next thing that needs to get done.  There are a lot of these things, so even though some hours are excruciatingly long, we get through each day.

I think I took a little hiatus from the updates because I was either a) enjoying time with my little family and/or b) just too exhausted to do anything once I actually had time to write.  Oh - and c) waaay too many snow days.  (This, of course, could actually fall under category a or b.)

So diving in...

Milla’s tube for her meds is doing great.  It is so, so wonderful to not have the screaming and gnashing of teeth that used to occur twice a day, everyday.  We are able to simply put all her meds through her tube and it’s done.  Decrease in drama = win for the Gieselmann family.

Thank you for praying for our transition into hospice for Milla - they have been utterly amazing and helpful and supportive - truly a blessing for us.

Milla - our crazy-determined little girl - her strength and will to get up and do things is something to behold.  She continues to lose strength and fatigues very quickly, but much of the time, she remains happy and social.  She loves to be with people, loves to show-off for people, loves to giggle and loves to make people laugh.  Our little introvert has become an extrovert!  She has good days and bad days - or more accurately, good parts of the day and bad parts of the day.  Over the last couple of weeks, her seizures have been on the rise again, so please pray we can keep these at bay as much as possible without her being a medicine-induced zombie.

And on to that pistol, otherwise known as Elle Gieselmann - she is now also having significant seizure activity.  Over the last month, she has been having super quick little seizures a handful of times throughout the day that have continued to increase to many per day.  And a couple of weeks ago, she had 5 long seizures in 1 week…2 of which we had to stop with rescue medication.

Needless to say, our hearts are being broken all over again.  Again and again.  This chronic grief can feel like drowning - at times like we can’t get a breath - but then God, in His mercy and love, lifts our heads and sustains us.  

On a lighter note and definitely a blessing and renewal for us - we were able to take a trip during spring break!  Make-A-Wish flew us all down to Fort Lauderdale for a week to enjoy Milla’s ultimate happy place…the beach!  We were able to fly on a beautiful private plane (with the most wonderful pilots) and stay right on the water.  Our condo there faced the ocean where we enjoyed 7:15am sunrises that came straight into the living room.  We had a pool just steps from our door and a few more steps took us right onto the sand.  It was absolutely perfect for our family and the girls had.a.blast.  Aaaand, we had my sister and Frazer’s parents there to help us which, of course, we all loved!  We are so thankful to everyone who made this all possible for us!!  And thankful to God for providing this us with a chance to enjoy each other as we basked in His beautiful creation.  

Last weekend we celebrated Ann Carlyle’s 6th birthday - we had friends and family join us at the awesome park just a block from our house - and then later that afternoon we had our own personal Easter egg hunt in our front yard, thanks to some sweet friends that hid eggs for us while the girls napped/rested Saturday.  It was a marathon day, to be sure, but a really fun one - thankful for all the bountiful blessings God has given us.  

Thank you, again, for faithfully praying for us - I am truly humbled by your love.

Please pray for a couple of pieces of equipment we are waiting on.  We’ve had some significant hiccups with a company that we have to go through to get these things for Milla, but our palliative care and hospice teams have come to the rescue (as I said, they are utterly amazing).  We should receive Milla’s stroller/wheelchair next week - which is much needed as she has outgrown the one we got in Nashville a couple months ago.  And we are waiting to get approval on an eating chair - we are really hopeful we can get a specific brand that is very portable and can be used in things like wagons, grocery carts, etc.  Please pray approval will come quickly as well as delivery.

Please pray for my mind to stay sharp.  I've joked about this a lot lately, but it's becoming a real problem.  I have about 18 million things in my head at any given time that I am trying to juggle/organize/figure out/process/etc.  My memory is failing me quite frequently these days and I’m worried that I will forget important things concerning all 3 girls and life in general.  Our lack of sleep around here is probably not helping either…which leads me to our next and ever-present prayer request…

Sleep.  We have no idea how we are still functioning at all - we really don’t.  It is a supernatural strength and perseverance that is happening here.  But we long for sleep.  Our teams are working really hard to get our insurance to approve night-time care but it’s uncertain at this time if we will get that coverage.  As I understand it, it’s not a qualifying issue, it’s a coverage issue.  So, I feel that it’s going to be a real battle to get this care.  Please pray that God will provide for us in this way.  (And/or that our girls would sleep!  Both Milla and Elle are having big problems in this area.)

Please pray for Frazer, as he has to get up and go to work everyday after not getting much sleep and somehow has to push all of this crisis to the back burner in order to do his job.  

Please pray for Ann Carlyle - she is doing really well in general but we saw some changes in her during the week that Elle had all her long seizures.  It was a pretty hard week for all of us.  Pray that she would know Jesus and His love for her.

Please pray for Milla and Elle - that God would keep them safe as their seizures increase and their coordination decreases.  Pray that they would remain happy and feel safe.  Pray that they would know how deep our love is for them and how deep Jesus’ love is for them.

Please pray for us as we continue to make daily decisions and long-term decisions and medical decisions.  Some things are ‘little’, like scheduling swim lessons for Ann Carlyle and Elle, and others are much more complicated and painful.  We also are in the process of doing some little projects around the house, one of which is converting our living room into a bedroom for Milla so that Ann Carlyle can have her own room.  (Ann Carlyle currently shares a bedroom with Elle.)  Pray that all this can be done quickly so that Ann Carlyle can get the rest she needs at night.  Oh and another specific (and big) decision to pray for is what childcare will look like this summer and into the fall - during the daytime hours and nighttime hours.

Please pray for our hearts as we grieve things that are happening now and grieve the things to come.   Our only hope is that Jesus has risen from the dead and will return one day to make all things new.  Pray that we would see only Jesus as we walk this road and that our hope would remain steadfast. 

I don’t really have time to follow blogs, much less a blog from someone that I don’t know.  But I’ve been following one for a year or so, written by a young mom with cancer - bad cancer that keeps showing back up.  She said this recently when they found more cancer in her body…”This is God’s story and I’m blessed enough to be walking it out with Him.  This battle is being fought on a cellular level within my body and it’s also being fought in the heavenly realm.  I don’t have to tell you in which world my hope lies.”  

Yes.

Much love, as always.  My prayer for y’all is that your hope is also in Jesus.  That you would know His love - a Love that gave His life for you and rose again - and therefore, know that sin has no power over you.  

Dana

“When I said my foot is slipping, Your love, O Lord, held me up.  When anxiety was great within me, Your consolation brought joy to my soul.”  Psalm 94:18-19

PS - I wrote this update a couple of days ago, but of course, didn't get around to actually sending it (another great example of the need for prayers for my not-so-sharp mind!)...

Anyway, a quick update since then...Our neurologist wants us to admit Elle to LeBonheur Tuesday to monitor her for a few days.  She will be in the EMU where she will be constantly monitored via EEG and video.  Please pray for all of us next week as life will be disrupted yet again to make this happen.  And pray for Frazer and me, as we begin this road with Elle - one we have already traveled with Milla.  It has been very difficult for us.

Another prayer request that I think I touched on above, but one that has become paramount for me - please pray for our time to be well-spent and multiplied somehow.  There are just not enough hours in the day to process things, talk about things, make decisions and then do all the other things we have to do all day everyday like work and take care of the girls and go to appointments, etc.  

And one more thing I have to say - THANK YOU to you all that have been helping me make this still new-ish house become a true home for my family.  The other day, a sweet friend hung a 2nd tree swing for us so I don't have to constantly switch out the girls (and they love swinging so much), and another sweet friend recently planted gorgeous flowers in my planters outside and this morning, an awesome crew of girls came over to help clean up and organize our attic and upstairs space!!!!  I feel 80 pounds lighter having that off my shoulders.  It's kind of ridiculous how much better this makes me feel!  There have been so many of you that have helped in this way over the past few months and for this, I am truly and forever grateful. :)

Ok, much love again!

Dana 

(I'll post some pictures soon but I have to run to PT with Milla!)

We are Home!!

We got home around noon yesterday. Milla is still hurting a bit and sleepy but she's doing great otherwise!

Thank you all for your prayers!!!

Love, Dana

We Got Into A Room!

Just wanted to thank everyone for your prayers and halleluia we got into a room tonight!!!

Surgery Update

Hey y’all - I just wanted to give a quick update - 

Milla had her surgery this morning and all went well!  She came off the ventilator quickly and with no complications at all.  Thank y’all so much for all the prayers and encouragements this morning!!!

She is morphined-up so she is feeling okay and is taking a good nap right now.  :)  We used her Gtube for her noon-time medication and it worked just fine.

Also - so neat - God has provided so many people that I used to work with at LeBonheur to take care of Milla today.  It is wonderful to be known and cared for as we go through this today.

One thing - please pray that we get a room soon.  The hospital is over-full and we are still in the recovery area waiting for a room to open up.  At this point, we are just hoping we don’t have to spend the night here (in the recovery room) where there are probably 10 or 12 beds sectioned off by curtains only.  (And we have a VERY unhappy neighbor - poor baby had his tonsils out and he’s having a rough go at it.)

Beyond thankful for you, our amazing community…thankful for God’s mercies…

Much love to all!  

Dana

God With Us

Hey there friends!  We have been plugging along trying to take one day at a time.

Milla has had some pretty good days over the last month (some decrease in seizures and increase in some of her strength) but we are seeing less and less of those days.  She’s had 3 med changes and I think that has helped her but the last few days she has been noticeably weaker and has had more seizures.  We are seeing some seizure-types that we haven’t seen in 9 months or so.  And all of her seizures are longer.  She is coughing and choking more with her liquids and on her saliva and her cough is weak and ineffective.  The ups and downs are exhausting along with the physical exhaustions of each day.  Milla is out-of-it much of the time, but she is also still very aware of her world and knows who everyone is and is still very affectionate and quick to laugh.  And she loves to make other people laugh as well!  We are so thankful for her spirit!

Little Elle-belle has been living up to her reputation as a pistol.  We are unsure at this time if we are just seeing a strong-willed 2 year old or if we are seeing neurologic changes.  I also feel that her speech has, yet again, declined sharply.  Lately, I have understood very little of what she is saying.  She had a phase like this with her agitation and speech decline back in the fall and then broke out of it for awhile - another up-and-down that is emotional exhausting.  But despite these issues, she remains strong and active and relatively seizure-free.  And she remains our little prayer warrior - both she and Milla want to pray all through the day and about 30 times during each meal.  Elle is always reminding us how many things there are to be thankful for, as she doesn’t just thank God for everyone’s food and all the people sitting around the table, but she thanks God for things like the lights and the ceiling and the chairs and her fork and her shirt.  How blessed we are to have a house to shield us from the cold and the rain, a place to eat our food, plenty of clothes for our bodies, a soft place to lay our heads at night.  Yes, so many things to be thankful for.

And our sweet and boisterous Ann Carlyle - whose heart is getting bigger by the day.  To witness her affection and care and gentleness towards Milla is straight up witnessing Jesus’ love.  And she and Elle have a sweet little relationship as well - always running around the house chasing each other.  Ann Carlyle never complains about helping them - only a little about Elle 'always copying her'.  :)  I love hearing her telling Milla that ‘Sissy is here’ or ‘do you want to push Sissy?’ (a game they play that makes Milla giggle) because she used to hate being called Sissy but now she wears that title proudly.  A few mornings ago, Ann Carlyle had both arms tightly around Milla as they were side-by-side watching TV - and with her voice full of sisterly pride and protection, she told me not to worry because she was holding Milla and that she wasn’t going to let her fall.  It’s these little moments that I treasure so much and store away in my heart.

Frazer and I are clinging to Jesus and each other as we move through each day.  Our hearts have been so very heavy.  We long to ‘fix’ this and we are utterly helpless to do so.  We thought we had learned what daily manna meant but we continue to find, in our helplessness, how much we need Jesus and how much we have to rely on Him to carry us through each hour, each day.  He gives us new strength and sustenance every morning.  It is indeed supernatural as we feel completely overwhelmed and weary much of the time these days.  

Please pray for wisdom and the wherewithal for us to process all the crazy in our lives and to make decisions and just to do life.

Please continue to pray for strength for our marriage.  This level of exhaustion and grief can be a minefield for relationships but we are praying and trusting Jesus and doing the work we need to do to process through the grief and to keep our little family together.  I’ve learned over the years that the times that we most want to turn inward and feel too ‘done' to be kind and gentle are the times that we most need to look outward and make offerings of kindness and gentleness.  Frazer and I remain best friends but we know the devil lies in wait and would love nothing more than to tear us apart.  

Please continue to pray for all 3 girls - my heart’s desire is for God to show them all mercy.  Mercy for Milla and Elle as they suffer through this disease and mercy for Ann Carlyle as she has to process and grieve through much too much.  And pray for their relationships with each other…that, although they are so young and time is so short, God would cultivate a deep love between all of them and that Ann Carlyle would have many memories of the time she had with her sisters.

Please pray for sleep.  Sleep has been a wee bit better.  Well, kind of…sometimes.  We all could use a little more of it.  And a special thank you again to all you early birds (angels) that come and sacrifice YOUR sleep and help us get a little extra of it.  This thing you do is so amazing and helpful to us…it is part of our manna every morning that God is providing.

Please pray for us as we will be starting hospice within the week…and pray that her hospice team will be full of compassion and be a wonderful resource for our family.

And a big request this week - Milla will be having surgery Friday morning to have a tube placed that goes directly to her stomach so that she can continue getting her meds.  She will be staying overnight at LeBonheur and might have to stay longer depending on how she does post-op.  Her doctors feel that doing this surgery now is important so that she will be strong enough to come off the ventilator without difficulty.  Please pray for this specifically - that she will have no pulmonary issues and that there will be no complications of any kind.  And pray that the other 2 girls will do well during the hospital stay.

Please pray for everyone’s health!  Milla and Elle amazingly have stayed healthy despite a sinus infection and fever virus that have made their way into our house.  Especially this week, we need our health…we don’t want to have to postpone Milla’s surgery.  And not only that, but a bad cold or other infection could have serious implications for Milla as her disease progresses.

And some very happy news and something to please be in prayer for…my sister is moving to Memphis!  She and her husband have 3 kiddos - Jack is about to turn 15, Colson will be 11 this summer and Lucy is 7.  The cousins adore each other so much and to have Dawn and Jeff here to help and live life with us will be just AMAZING.  They will be listing their house in Birmingham in March and Lord-willing will be able to move here in the summer.   So please pray that they will sell their house easily and that they will find a great house close to us easily and that all the timing will work out well.  God has already shown them multiple times that He is going before them and is paving the way.  I know He will bless this thing they are doing as they follow His lead to sacrifice (even though they don’t call it that) - uprooting their family to come here to be His love to us.

As I was starting this email trying to think of what to say to you, I kept hearing/thinking, Emmanuel - God with us, over and over again.  I was encouraged last week to remember the literal presence of Jesus with me as I struggle through my day…as I watch my children struggle…as I so often fearfully consider what our future holds.  I long for Him to come back soon.  But for reasons I have no business trying to understand, He has us here and has chosen my family to walk this hard road, fraught with danger at every turn.  So we will choose to say, not your will, but Thine.  Blessed be the name of the Lord!

Much love and thankfulness for all you do!

Dana

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!