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!

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