One of my favorite pictures ever...her first hug for me since we have been here...

Elle Update: 4/1 Day 2

Y'all are so awesome - thank you so much for the outpouring of love, prayers, support and willing hands!!

We are Day 2 in the hospital.  Elle is still intubated and in the PICU.  However, her chest X-rays are looking great and the lab results relating to her breathing function are great too.  They tried to wean the vent a bit last night but she didn't tolerate that well so they put her back to her original settings.  But we weaned the pressure from the vent juuuuust a little a couple of hours ago and she's doing great.

She still has her chest tube but it is barely draining anything so if she continues on this path, they will pull it out in the morning.  (I feel a side stitch every time I think of the chest tube - I've never had one but I've heard they are brutal.)  So I am super excited to get that out of her, as I'm sure she is.  Also it's one more tube that is preventing me from holding her and that makes me so sad.  I literally have not not held her in my arms for this long in 7 years unless we were in different cities.  

Elle's infusion is scheduled for tomorrow but as of this hour, there is a debate over whether to do it tomorrow or in a couple of days.  So she should get her infusion this week but not sure which day yet.

This morning, she gave us a little scare because she was utterly unresponsive to any kind of stimuli for a few hours.  They did a CT scan of her brain to make sure nothing was being missed and then an hour later, Elle woke up and started responding to some of my questions, nodding her head, opening her eyes, moving around and grabbing my neck for a chokehold hug.  It was awesome.  Frazer said it was Elle's April Fools Day joke. :)

(Oh and the CT was fine.)

She's had a pretty good day and was responsive multiple times today.  Her cousins were up here this afternoon and she smiled so big playing with them!  She actually smiled big with that tube in her throat!  (Cousins are the best.)

She's struggled a couple of times today with coughing, gagging and pain and we've had to give her some pain and sedative meds here and there.  She seems to be getting more uncomfortable the past hour and her tummy is messed up a little too.  Meds are on board and we will go one step at a time.  Her medical team has been wonderful here and we feel listened to and really heard by them and they have been very forthcoming with information which is such a gift when you are a hospital parent.

All in all, she's had a pretty good day.  She is getting better slowly but we are headed in the right direction and that's what is important today.

Tomorrow morning we should get a couple of lab results back that might help clarify some of our treatment decisions.  Please pray that we get those back as the implications could be  a such big help moving forward.

Ann Carlyle seems to be doing well.  She was perky and happy at breakfast when I talked to her and she had a good day at school.  I talked to her again a bit ago while she was at dress rehearsal and she told me, 'Mom, I have to make this quick.  I'm in the middle of a costume change.'  There was fun and delight in her voice and while she had a couple of worries during the day about Elle, she is doing well.  But of course, please pray for the processing of all of this.  (And her school is just the best place and the support for her is amaaaazing - thank you CMDS! And even more awesome, her aunt is the counselor there -  the love there is for real.)

Oh - thank you to all (friend and stranger) that have asked what they can do for Ann Carlyle to make her feel special this week for her birthday.  I mean, you make a momma's heart melt!  Honestly, a bunch of birthday cards would make her so happy. That would make her feel seen and loved.

Please continue to pray for Frazer's dad - they are still in search of answers for his pain.

Thank you again for all your words and acts of support - we are feeling the love!  I'll update when I can tomorrow.  Much love from all of us- 

Dana

Please pray for Elle

Hey guys - quick update to let y'all know what's going on and to ask you to please pray for Elle-belle.  

She had seemed to have a bit of a cold starting Wednesday afternoon but by Saturday, we had her on oxygen and we were monitoring her closely.  We tried to manage her symptoms at home but by Saturday night, we had to take her to the emergency room for respiratory distress.  

They intubated her, put her on a ventilator and gave her a chest tube because there was a ton of fluid in and around her lungs. They started her on IV antibiotics although there may not be an infection - but just to make sure everything is covered while we wait for lab results.  She is sedated and on some IV pain medicine.

We are taking this one step at a time.  We are hoping to wean her off the ventilator tomorrow or Tuesday but you know, it just depends on so many different things.  I will say that we are greatly encouraged by how well her lungs have improved in just the last 24 hours.

We will be at LeBonheur for at least a few more days...but again, so many variables.  (Right now we are in the PICU because she is sedated and intubated.)

Please pray for Ann Carlyle as she is turning 10 in just a few days (!!), is performing in her first school play this week and is trying to process a lot of scary stuff she doesn't understand.

Please pray for me and Frazer as we are worried, sleep-deprived, trying to make wise medical choices for Elle, all the while trying to care for and be present for Ann Carlyle...especially this week!  Please pray for sustenance and for us to not be driven by a spirit of fear.

Pease pray for Elle's whole medical team - that they would make wise, caring decisions on her behalf.

Please pray for Elle to continue to be stable and improve and get home as soon as possible!  And please pray that we figure out what has caused all this mess.  

Also, please pray for Frazer's dad as he has been dealing with some pretty severe pain that we don't yet know the source of.

Thank y'all for gathering around us and lifting us up.  We are so thankful for you.

Dana

March!

Can y'all believe this? It's only been 2.5 weeks since my last update! It's a March miracle.

Elle started school this past week!  She was worn out but a good worn out.  Her first day, she had a field trip to the Art Project - an art workshop in midtown.  She came home with paint everywhere so I know she had a blast.  Wednesday, they had a wheelchair basketball game and pep rally that all the kids attended.  When I picked her up at 12:30, it sounded like a massive dance party was going on in the gym.  Thursday, they studied Italy.  Friday, they had a Dr. Suess parade.  That's a strong first week of school right there!

We are so thankful for Shrine School!  Everyone there is so kind and truly want the best for these kiddos.  Lots of smiles.  Lots of gratefulness.

It seems that Elle is losing/has lost a good bit of eyesight the past month.  She is doing ok with it - she doesn't seem too frustrated with things specific to vision - but it's a new stage we are entering into and there are challenges and there is a grief that comes with each bit of progression from Batten.

We also are seeing some different signs of dementia - some of these things cause her distress and some of these things don't.  My prayers have always been that Milla and Elle would never not know who we are...that they would know our sound and scent and touch and that that would bring them comfort even when they can't see us and can't understand everything going on around them.  And that the dementia would be a strange kind of blessing - that the clouds of confusion would wrap them in joy and the presence of Jesus and the knowledge of His deep, deep love for them.  Praise God we saw this happen with Milla...and now we continue those prayers for Elle.

It's a weird thing.  People ask me how Elle is doing and truly, I've been at such a loss of what to say these days.  She is not sick with an infection, her seizures aren't totally out of control relatively speaking and she's a pretty content kid most of the time.  All these things we are so, so grateful for!  But we also see disease progression every single day...some of which are such small progressions but we recognize so much from Milla's journey. 

I've spoken of this before (not sure if I've written about it) but seeing these things is complex.  It's scary and heart-breaking to see these same things happen to Elle and we know much of what is to come because we have lived through it already.  And sometimes my courage and fortitude wavers as I have to walk this road all over again and too, while I am still very much grieving Milla.  It is crazy how much Elle can look like Milla.  I mean, I have to remind myself that I'm not holding Milla.  And there's a part of my heart that loves seeing an actual physical body that is such a copy of her.  My heart swells for just a moment as I see Milla...just for a moment...because I miss her face and her body and her hands and everything about her.  But then the depths of grief crash into me and my body feels actual pain from the loss of her.

We are still without a night nurse for Thursday, Friday and Saturday nights but we've had substitute help most of those days the past couple of weeks. Please keep on keepin' on with praying for us.  Thursday night, Frazer was out of town and I was up all night with Elle and I'm STILL feeling it.  You'd think I'd have some kind of tolerance built up by now, but instead I think it just chips away at me.

When you think to pray for us, please keep a dear family from Memphis in your heart - the Masons.  Their little girl, who had Batten Disease, died a week ago.  Our hearts just break with them.  We also know that while nothing can remove their pain and fix their utterly broken hearts, there is a supernatural balm that covers us from our God through the prayers of others.

Spring break is next week - can't believe it!  We, as a family, are not going anywhere but Ann Carlyle and I are doing to road trip to Birmingham to see my family for a couple of days.  We are both excited but Ann Carlyle is super-duper excited.  :) Please pray that everyone stays healthy and that we can go and have a good time there.

I am thankful to be able to take Ann Carlyle away even just for a couple of days.  She also sees the way Elle mirrors Milla and she feels the loss (and anticipated loss) of her sisters so much...it seems she feels that loss even more-so the older she gets.  Please pray for her little heart.  She has sacrificed and continues to sacrifice so much.

I'll wrap up with a verse that I read this morning at church...

"And after you have suffered a little while, the God of all grace, Who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and settle you. To Him be the glory and the dominion forever and ever. Amen."  (1 Peter 5:10-11) We live not for ourselves and for this world, but for Him and for the world to come.  I was reminded this morning yet again that our suffering is not wasted.  It matters.  Praise be to God!

May God bring you comfort today, wherever you are, whatever you are going through.  May you feel the deep, deep love of God.  May He wrap you in His light and warmth on this cold and dreary day.  Much love from the Gieselmanns!

Dana

Valentine's Eve

Hey there!  I just wanted to send out a quick update on things this week.  And it's mostly good! 

Elle will start at Shrine School possibly next week sometime...or it may not be until the following week...but still!!!  We are so excited about this and feel that she will do great there.  It is a public school here in Memphis that serves only disabled students.  They have a full-time nursing staff, a great student-teacher ratio, a staff that seem to really care about these kids and are passionate about what they do.  She also can get all her therapies there (PT, OT, speech) aaand they even have an indoor pool for water therapy that she will get to do every week!  Please pray that the transition will be easy and that Elle will be well-cared for while there.

Yesterday, we got a letter that Elle's enzyme treatment would no longer be covered by insurance starting in March, but our awesome team at Lebonheur and in Ohio got on it and less than 24 hours later, she is covered again until August.  Thank you, Jesus!!  And thank you Karen B.!!!  Whew.  We had seriously geared up last night for another weeks-long battle with insurance but no need. It's done.

Elle is over her infection!  We were able to treat her at home again - so, so thankful for our Palliative Care Team.  And after 5 or 6 weeks of someone being sick (mostly me and Elle), we are all 4 healthy for now.  :)

Plus, I got my soul fed last weekend with a 2-day get-away with a big bunch of my girlfriends and my sister.  Thank you girls for your friendship and love and for how you make me laugh and how you make me dance.  (And how you make me sing at the top of my lungs to 90's country music...and then 80's pop and hip hop...and then early 2000's rock...and then early 2000's folk rock...etc...for hours and hours.)

Elle seems to have gained back a little of her lost strength now that she is healthy...or at least her will and spirit to be strong.  :)  She has been happy and relaxed most of the time, which has been so lovely since she and I are spending a.lot of quality time together.  Truly a blessing from God during this time that she is not in an angry and screaming phase.  Also, her seizures have been a bit better the last few days...we don't know why but we'll take it!

We are still without a night nurse Thursday-Saturday nights but some wonderful and amazing friends have been helping out the last few weekends...thank you, dear people!!!  Thank you for being so sacrificial with your time and energy.  (Also applies to the dear people that have helped out in the daytime hours since Elle hasn't been to school in a month.) Please continue to pray for a weekend nurse.

As is every day, I thank my God for you - you are so steadfast in your prayers and help for us.  What a loving and wonderful God we have.  He holds us in the palm of His hand and will not let go.  It doesn't matter how hard the wind may blow...how the storm rages...we are safe.  He sets my feet on a hard place.  HE is love.

Happy Valentines Day tomorrow, guys!  May your sugar-rush be high and your heart full.

Dana

January Update

Hey guys!  I come to you this morning with freezing cold fingers and a bit of an anxious heart.

When it rains, it pours and we've had a bit of a downpour the last week or so.  So I'm going with bullet points today.

-We are without a night nurse again for 3 nights per week.  We are exhausted.

-We are in a now 10-day battle with Elle's insurance for her medicine that she has been getting for months.  Apparently there was a glitch in the system and I don't even know but we have been on the phone every.single.day for hours with pharmacy and insurance and doctors and nurses and on and on.  If anyone has ever had to work out something with insurance, you know it is a full-time job until it's resolved.  We still are 'working' on this.  We have enough for a couple of days at a time, fortunately, to get her through but oh my soul it's exhausting and like beating our heads against a brick wall.

-Elle's school told us they can no longer have her there.  This is devastating to us (and we were completely surprised by this) and we are scrambling and fighting trying to figure out what we can do to get her into a school so she can have the social interaction she desperately needs with kids her age.  We are looking into a couple of options that might work out so please pray that we can get this resolved and resolved quickly as she has already been without school for almost 2 weeks.  We are exhausted.  Again.

-Elle is not doing great lately.  She's lost a lot of strength and control the last few weeks.  Her seizures are longer at times.  She is having trouble focusing her eyes.  She's not swallowing as well.  Her full body is contracting during her sleep sometimes - could be seizure activity but could be neuromuscular issues.  She's having reflexes that babies have - which points to brain degradation.  Her stamina has decreased.  She is not sick, thankfully, and we have not seen any life-threatening problems necessarily (breathing, heart, etc) but we are still seeing a good bit of disease progression.  This exhausts me as well as I am fighting with my anxiousness and worry that gets me nowhere.  We see a lot that we have seen before with Milla, and that's hard.

*So I started this email yesterday morning...life got busy.  :)

A couple of updates:

-We got her medicine!!!  A whole month's worth!!  Yay!!!

-We are moving forward with a couple of school options...baby steps but still very encouraging news.  

-Elle got super sick overnight with a respiratory infection.  She's having a hard time breathing...although she is stable right now.  But as I said above, her strength is not what it once was, so we are on high alert.  Please pray for her health and that we can treat her at home.

Well, that's the bulk of the past couple of weeks and I can't really write much more right now...gotta tend to this sick kiddo.

Thank you all for your steadfastness in standing with us and for us. Much love!

Dana

And a very, Merry Christmas to You!

Hey guys!  Thought I'd pop in for a long overdue update.  :)

This season is a tough one for us as many of you know.

We celebrated Milla's birthday November 2nd (it would have been her 8th birthday) and celebrated her meeting Jesus on November 26th...it's been 2 years.  I cannot begin to tell you how much I miss her.  That loss seems to grow daily and sometimes that void is so profound that it literally takes my breath away.  

But as you have probably heard said, the pain doesn't ever go away, we just get better at living with the pain.

I still have moments when it all just seems like too much.  I can't bear to go on.  I have no more strength to carry on.  

But I do.  Not because I am a tower of strength and determination.  Not because I can do anything I put my mind to.  But it's because of Jesus.  I can't talk about Him enough, y'all.  He sustains me through the darkest times, through my weakness, through my whininess, through my anger, through my pain, through my failures.  He is the One holding me up - carrying me.  

I think of how Elle needs us to do everything for her - she cannot walk, she cannot stand, she cannot feed herself, she cannot swallow liquids, she cannot speak the words she wants to say, she cannot use the toilet, she can't even hold her head up at times.  We hold her and carry her and feed her and listen patiently to her and wipe her bottom and use our hands to hold up her head so she can breathe and see.

This is an amazing front-row view that I get to live out - how God loves and cares for me.  All praise to Him Who carries us but Who also came and humiliated Himself as a baby (who needed to be fed, wiped and held) so that we might have life.  

Also, how amazing is this...He understands just how Elle feels.

It's been a hard season for all of us.  Ann Carlyle has even seemed a bit melancholy at times which normally isn't even in her playbook.  We all miss Milla so much and we all remember the precious and the painful of November 2016.  Thank you for praying for us and our families during this time.  We are truly blessed through that.

Elle is doing okay - in fact, after a couple not-so-great months, she seems to have plateaued for a few weeks now.  Her seizures are pretty stable these days.  A month or so ago, she gave us quite a scare when she got some kind of respiratory infection. We were able to keep her out of the hospital due to her amazing palliative care team but she was on oxygen and a monitor and was just really, really sick.  But she has rebounded really well and while we see a little diminished strength, overall she is doing well.

A big, huge, titanic thing has happened!  We finally got her wheelchair/stroller, her bath lift aaaaannd...a wheelchair accessible vehicle!!!  So now we can put her in her wheelchair (inside where it is nice and dry and warm) and then just roll her outside and roll her up a ramp and into a Ford Explorer!  It's awesome.  We can even start the car up from inside the house and have it all warm when it's time to go.  And I have heated seats which is just a Christmas miracle for me.  Elle's wheelchair rides in-between and just behind the front seats so she basically feels like she is riding up front.  I'm able to reach her and see her well and she loves her new car.  :)  Ann Carlyle loves it too and is super excited to help lock the wheelchair down and help with all that.

Our backs are rejoicing.  And shoulders and necks and arms and everything.

The bath lift is great too - it is a chair that you can raise and lower down into the tub so it's muuuuch safer for the bather and the bathee.

Thank you for all the love and support as always!  I can't ever say enough thanks for the all the hundreds and hundreds of meals we have received over the last 4 ½  years and now I am trying to cook some meals myself during the week. It feels good to be able to cook for my family again.  It's only been a week and Elle is not the biggest fan as it takes me away from her, but I think this will give us some help with some dietary changes we've had to start making due to some health concerns.  I've never loved cooking but I have truly enjoyed accomplishing these dinners this week.  Thank you to those still providing meals a few days a week and for doing the chopping and prep work (which is often the most time-consuming part!) so I can speedily cook a meal.  It takes a (big) village and you guys are the most amazing village!!

Thank you also for those that help us with childcare!  These times are much-needed and much, much, much-appreciated.  I can't express how helpful this is to our marriage and our chore-list and our tired bodies and minds.  Thank you from the bottom-of-my-heart to all you warriors that give of your precious time to give time back to us.  

Special shout-out to my mom...who is one of the most self-less and gentlest and amazing women I have ever known.  I could and should send a special shout-out to her every week.  She regularly drives to Memphis from Birmingham to help with Elle.  Elle is tall and strong-as-an-ox 60lbs and my mom is 5'4".  My mom is a superstar.  And she not only cares for the physical well-being of my girls, but for their souls.  Through her life and through her words and actions, we are all witnesses to Jesus' light and love.  Oh and she loves on me and my soul too.  :) We may be 6 months away from Mother's Day but she deserves to be celebrated every day.  I love you, Momma and THANK YOU.

These 2 things, help with meals and help with Elle, may seem like smallish things but they are massive things.  And we have had consistent help with those things since 2014.  Just wow.  And thank you again.

Okay, I'm going to wrap this up :)

Love to you and yours.  May your Christmas be filled with true peace and true joy.  Emmanuel - God with us.

Dana