Still Rough-Going

Not too much good news this week, I'm afraid.

Milla continues to have more seizures and tremoring during the day and the worst of it is at the end of the day and in the night.  The seizures are making it very hard for her to fall asleep and once she is asleep, she will typically wake up multiple times because her body is so tense/seizing.  She's out of it more often and her interactions are less frequent.  She will have good spots mixed in during her days, but those times are becoming shorter as she fatigues so quickly.

Also, she ended up getting hand, foot and mouth over the weekend.  While she only had the sores/blisters in her mouth, it was awful and so painful for her - and she was so very lethargic.  Thankfully, she turned a corner Sunday and started to improve from there.  Everyone is healthy this week!  Yay!

Not much good news on Elle either.  She looks like she's been beaten black and blue - everyday more bumps and bruises.  Tuesday morning, she fell hard and nearly bit through her lower lip.  She had a huge, gaping gash inside her lower lip but fortunately she didn't have to get stitches.  Her front teeth have darkened and her gums are all bruised.  But, surprisingly, it hasn't affected her desire or ability to eat!

Also, Monday afternoon, I had a little wreck.  Fortunately, no one else was in the car but me and fortunately, it wasn't my fault and fortunately, the man that hit me has good insurance.  It was pretty minor but my car still had to be towed and will be in the shop for awhile.  

So, we are going to play with Milla's meds to see if we can't control at least some of her seizures.  And we increased one of Elle's meds last week and then a bit more this week - hopefully we will see some positive changes for her.  As I've said before, it's always hard to balance the quality of life between seizure activity and its effects and being too drugged out.  Please pray we find this balance for both girls quickly - without having to go through too much trial and error.

I'm feeling a bit better the last couple of days, but please pray for my heart.  I have been struggling with a lot of sadness and anxiety lately - more than the usual that is always creeping in and out of my heart as we go through all this mess.  Seeing Elle and Milla struggle so much and seeing Milla so lethargic over the weekend just flatlines me. 

Please pray that God will continue to comfort and sustain all of us.  An old but wonderful hymn...

I need Thee every hour, most gracious Lord.

No tender voice like Thine can peace afford.

Forever thankful for y'all!!!

Much love,

Dana

A super-duper happy Milla :)

Sweet sister time with Ann Carlyle and Milla

Elle, The Cool-Cat Princess

Mid-May Update

So we are putting one foot in front of the other over here.

Milla is about the same.  She is progressing along and has had some hard times falling asleep due to her tremors becoming worse at bedtime (probably because her body is so fatigued by then).  She also is occasionally waking up in the middle of the night because her tremors will start back up.  So we are increasing one of her meds to combat that.  We continue to see more weakness and spasticity in her body.  But she remains the warrior that she is!  She works so hard mentally and physically - and always with a smile - she is amazing.

Elle continues to have hard days lately as well.  I'm hoping that a contributing part of her issues is due to the hand, foot, mouth infection she has right now.  :(  She is pretty miserable this week.  But infection or not, we are increasing one of her seizure meds to see if her seizures, tremors, etc. decrease.  Pray this virus clears up quickly and that the sores in her mouth will heal tonight as those sores are causing so much pain that she's having a hard time eating and a super hard time taking her meds.  She's been crying most of the last 3 or 4 days...more than her norm/usual.    

Update on Mrs. Melba: Her surgery went very well and the doctors think they got all the cancer out - pray that they really did!  Thank you for praying for her.  She still has a long, long road of recovery, but praise the Lord the surgery went well!  And Milla has been adjusting well to school-without-Mrs. Melba.  She (and I) had a hard time at drop-off the first couple of days without Mrs. Melba but we are both doing better. :)  The kids in her classroom are giving her a little bit of extra love, and the teachers are working so hard to make sure she is taken care of and is happy.  As I've said before, we are so thankful for Second Presbyterian Church's nursery, special needs class and PDO programs!  They have loved us well.

Please continue to pray for strength, energy, wisdom and health for all of us!  And thank you, as always, for your faithfulness in praying for us.

Then the One seated on the throne said, 'Look! I am making everything new.' -Revelation 21:5

Come quickly, Jesus!!

Much love to you all!!

Dana

May Update

So many of y'all have been asking how we are doing...thank you so much for caring about us and praying for us and taking care of us!

The good news is that we are all infection-free/healthy!  Thank goodness.  Those sinus infections hang on for.ever.

The bad news is that both Milla and Elle are still not doing well.

Milla continues to weaken.  She sometimes isn't able to/doesn't want to bear weight but she is able to other times - although she fatigues quickly.  Her tremors have worsened, her eye-rolling seizures are much more frequent and she has developed some spasticity in her wrists and legs.  She isn't holding herself up as much as she was which makes getting her into a good position much more difficult.  As a result, her spine is staying curved now.  We will be seeing an ortho doctor soon to see if there is anything we need to do for her spine/posture.  She is choking more frequently due to her secretions and she has had a couple of nosebleeds that have caused a good bit of choking.  We will be seeing the girls' neurologist next Monday for a checkup.

Elle is also progressing.  She continues to have falling/balance issues.  Her absence seizures have been noticeably longer and more frequent.  Her checking-out episodes have increased as well.  There are times of the day that there is almost no break from seizing and/or checking-out.  She has also had a handful of times in the last week that she is unable to get up after falling.  A couple of times it seemed she couldn't figure out how to get up and a couple of times it seemed her muscles wouldn't work.  She was unable to jump with both feet this morning.  She has braces now for her legs that help her bring up her toes as she walks/runs to cut down on some of the falling.

It's a lot.  A lot to carry.  A lot to do.  A lot to process.

Also, please pray for Ms. Melba - Milla's one-on-one teacher at her preschool.  She was diagnosed 2 weeks ago with ovarian cancer.  Ms. Melba will be having surgery Wednesday and then she will start chemo.  She and Milla are so very connected...this is so hard on both of them.  I cannot begin to describe how special their relationship is - they love each other so much. Milla cried when I left her at school last week without Ms. Melba being there.  Please pray that Ms. Melba will have the strength she needs and that the surgery will not have any complications.  Pray for her healing.  Pray that Milla will find comfort and understanding.  Our hearts are so burdened for them both.

Pray for continued wisdom as Frazer and I have to make decisions regarding the girls.  And pray for wisdom for their doctors, therapists, nurses, etc.  We are so very thankful for such an amazing team of people God has gathered to care for Milla and Elle medically - people that care so deeply for them and all of us.

Please pray for strength of heart and body for me and Frazer.

Please pray for Ann Carlyle as she sees her sisters' disease progressing.  Right now, she is sailing along very well and is being such a sweet and attentive big sister.  Her love for her sisters grows everyday and while there are still plenty of sibling squabbles with Elle, she is becoming much more patient and I see her nurturing them and serving them.  It's beautiful.  Pray that she runs to Jesus for comfort as she sees us run to Him and that He will continue to draw her to Himself.  Pray for her little heart.

Thank you all x a million zillion.  I am constantly blown away by the little and big and everything in-between things that you people do for us.  God is so good.

"When I said, 'My foot is slipping, Your love, O Lord, supported me.  When anxiety was great within me, Your consolation brought joy to my soul."

Psalm 94:18-19

Much love,

Dana

The amazing Ms. Melba and Milla

Ann Carlyle and Elle

Elle and her PT, Sonia, trading shoes :)

Happy Birthday to Elle!!

As crazy and fast and busy as life always seems to be, there's always room for it to get even crazier and faster and busier, right?!

I'll jump right in...

We celebrated Elle's 4th birthday last week!!!  We are so thankful for that spunky firecracker/tornado!  :)  We had a big (huge) princess bouncy house party for her Saturday and the weather was perfect and she LOVED it.

The crazier part of life comes in with how the girls are doing.  Unfortunately, it's not good news.

Elle's balance and falling and seizures just keeps ramping up.  It's super hard for all.  I'm not sure if we are going to try to combat it with meds yet at this point or not.

Milla's bounce-back has pretty much leveled out and she is regressing a bit.  I'm pretty convinced though, that part of it, at least, is due to her getting sick.  She started getting a chest/head cold Friday afternoon and it's still going strong.  Her lungs sound terrible but she is coughing productively, which means she is moving all that junk up (and totally out hopefully).  She's been tired and clingy and weaker.  But she's hanging in there.  She is truly Mighty Milla!!

Also, I have the same cold and I am feeling pretty yucky myself.  Please pray that this infection gets outta this house asap!  

This is the second time in a row I have written under the influence of drugs...eek.  Hopefully, this time I didn't misspell something like 'route canal' instead of 'root canal'.  (Eye roll)  

So I'm keeping it super short again - just wanted to keep everyone in the loop!  Please pray for good health!

Much, much love!!

Dana

PS - I'll try to post some pictures soon

April!

Hello friends!

So sorry for the lapse in updating - Frazer had written one but we decided not to send it because things are a bit different for now.

Milla is doing much, much better!  She has had a huge surge of energy, alertness and an overall decrease in tremors and seizures!  We increased her depakote just a little bit a couple weeks ago and it is making a big difference - one that we didn't expect at all.  We are so thankful for this time with Milla!  

Elle is about the same - falling a lot and seizing a good bit.  Her rages seem to be on the rise again as well.  It's been pretty hard to watch.  We are having her fitted for some spring-loaded ankle braces that will hopefully help her bring her toes back up while she is walking/running and ideally, this will help her not trip so much.  We did increase one of her meds - an effort to better her sleep.  We will give it a few more days to see if it works.

Monday, we went up to Columbus, OH for an appointment at the Center for Batten Disease and met with a myriad of specialists.  No big changes - mostly, confirmation of what we are already doing. Thank you to those that helped us get up there and back home so quickly and kept Ann Carlyle while we were gone!!

Last week was Ann Carlyle's 7th birthday!!!  She and her friends went to the planetarium for a show and then we moved the party to our house for doughnuts.  She is so interested in stars and space and all right now.  Space and legos are her obsessions.  :)

Next Wednesday is Elle's 4th birthday!!  I can't believe our baby is turning 4.  Until last month, she still looked so much like a 3yr old to me but then she had a growth spurt and her legs are all of a sudden longer and she has transformed into (almost) a 4 year old!

So, I had a root canal this morning (not cool) and I'm still somewhat woozy and the pain is starting to kick in as the numbing wears off so I'm going to wrap this up but I wanted to keep everyone in the loop! (This is the choppiest update - I'm not very with-it!)

Much, much love to all!!

Dana

Thursday Update

Hey everyone - so I really didn't feel like writing this week because it's just so hard to write the yuk and to actually see the yuk written out.  But on the other hand, I want to keep everyone updated and if I wait too long, I'll get too overwhelmed.  And then 2 months will pass.  :)  

So this will be relatively quick.

It's been a rough week.  Easter weekend was really rough.  Bottomline, we are seeing more and more progression with both Milla and Elle.

It makes my stomach hurt.  It makes my heart hurt.

Funny thing is that I still know and feel God's love and I have joy in Him.  Truly.  And that is supernatural, my friends.  I mean, how real is my relationship to Jesus if I don't believe Him when it hurts?

I read One Thousand Gifts this past week.  Found a lot of truth in there.  Here's one of those truths that struck me...

"All fear is but the notion that God's love ends."

I am choosing (most of the time) to not be fearful - but also I know that it's okay to be sad and grieve over my babies.  2 different things.  Joy is not an emotion that is 'instead of' but it is an abiding thing.  Found in Jesus alone.  Without Him, my faith is gone in a moment.

God's love never, ever, ever ends.  Therefore, what do I have to fear, really?  I have a lot of sadness about a lot of brokenness going on in our world and outside our world.  But I also know that God will make it all okay and one day, my girls will be made whole.  He has already won.  It is finished.

Thank you for everything.  Always.  Our gratitude for you is immeasurable.

Dana

Easter Sunday - extra hugs and snuggles needed

I had a lunch-date with Ann Carlyle and Milla on Monday - we had such fun :)  Her smile lights up the room.

Milla excited about seeing Ms. Melba - her one-on-one teacher at PDO - oh how they love each other!

Mostly Much of the Same...

So I may just start doing the date as the subject line.  Boring but coming up with a title is brutal.  :)  Not my thing.

Anyway, quick (I think) update...

Not much has changed.  Milla's tremors are still super bad.  We had our appointment with the girls' neurologist a week ago and also got an EEG last Wednesday to make sure she was not having a ton of seizures.  Sure enough, her tremors and muscle contractions are due mostly to her disease and not seizures.  As I've said before, this is pretty hard to process (not that seizures are good) because this confirms that her brain is further degenerating and her disease progressing.  We are entering a new phase of this with her.  Disheartening to say the least.

We are increasing Milla's valium, with hopes that it will calm some of the tremors, especially at night, so that she might sleep better.  Her whimpering at night has been a bit better, but she is still waking up a lot.  And some mornings, like this morning, she is up at 2 or 3am for the day.  Lack of sleep can exaggerate all of her symptoms, so, of course, we want to combat that. 

We are also adding another drug she has been on before to help decrease her oral secretions.  She has been choking, mostly between meals and at night because she can't manage her saliva...hopefully, this will help without causing pooping issues, dehydration, etc.

Another way we see progression is just her body not being able to handle stress.  Sunday night around 10pm, she woke up with a massive nosebleed.  It took a bit of time to stop it but all in all, it was fine (the nosebleed part).  However, it took about 2 hours and 2 extra doses of valium to get her body to relax enough to go back to sleep.  Her whole body was contracting and shaking.  It was awful.  

Also, Elle continues to check out and seize and fall and get bruises and bumps.  She's about the same as the last time I updated, I guess, but we have since increased her depakote (seizure med) a good amount.  Just like with Milla, we feel that we are moving into a new phase with Elle and we are trying to adjust to this new norm.

Let's see, what else...

Atlanta was great - exhausting but it was so good for my soul to be with my sister for a couple of days and we were glad Lucy and Ann Carlyle could be together too.  :)  By the by, if you ever have the opportunity to go to the aquarium there, you should go!!  It is wonderful!!

Oh and I have had 3 consecutive nights of good sleep!!!  I am feeling sooo much better.  Still processing and dealing with very hard things, but I feel more stable at least.  Oh how I love sleep!!!

Praying for a meaningful weekend for us all, as we reflect on and celebrate our Jesus, Who died on the cross for our sins and rose from the dead!  How amazing.

As usual, songs fill my soul...and these words struck me especially deep this past week from How Deep the Father's Love For Us...

"How great that pain of searing loss,

The Father turns His face away."

Oh how He knows our pain.

And this...

"I will not boast of anything, 

no gifts, no power, no wisdom,

But I will boast in Jesus Christ,

His death and resurrection.

Why should I gain from His reward?

I cannot give an answer.

But this I know with all my heart, 

His wounds have paid my ransom."

(The whole song is wonderful and beautiful.  I encourage you to look up the lyrics and/or listen to it.)

He is alive!!!  Much love to you all!

Dana

Cozied up with Milla for her EEG

Milla getting some hugs and love from Sissy (Ann Carlyle) - how I love this picture!!!!

Ann Carlyle, Auntie Dawn, Lucy and Dana at The Georgia Aquarium