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

Rain, Rain, Go Away!

So we are on day 2 of rain, rain and more rain.  And it's not stopping anytime soon.  But just like last time, we had a beautiful few days before the rain came and we soaked it up.

It's been a rough couple of days for Elle.  She has scrapes and bruises all over her arms and legs from the last week or so.  She had an accelerated drop last night which resulted in her face-planting into the hardwood floor and a huge goose egg on her head.  She was on her hands and knees (relatively close to the floor already) but the seizure had such force behind it, it slammed her head into the floor so hard.  Then about 15 minutes later, she had another accident on the same side of her face on her cheek which bruised up pretty fast.  But fortunately today, her face and head look much, much better with surprisingly little bruising.  

It all is just so terribly familiar from going through this phase with Milla.  That's been really hard on both Frazer and me lately.  We generally know how this is going to play out and it's not been easy distracting ourselves from dwelling on that.

Elle's behavior has been okay overall, but there are times of each day that it gets bad and she is miserable.  We see her neuro Monday...not sure if we will change up anything but it will be good to have her looked over.

Speaking of neurologists, we are going up to see the Batten specialist neuro in Columbus, OH, mid-April.  She had wanted to see the girls every 6 months or so to lay eyes on them and check them out.  We will meet with a whole team up there like we did last fall to brainstorm ways we can manage Milla's and Elle's symptoms.  Just wanted to put that on your radar to pray for that trip.  

What else...

Elle is still taking her meds well!  Praise God for this mercy!

Milla's tremors and myoclonic seizures are getting worse again, despite the scheduled valium.  But we have also weaned her totally off of one of her other seizure meds.  I was really hoping she could stay off of it, but I'm not sure she will be able to do that.  Today her tremors and seizures have been especially bad - constant and fairly large.  

In one way, Milla's nights have been a bit better with the crying...it's been a little easier to calm her down and get her back to sleep...but she still has a crying episode pretty much every night.  And her overall sleep is not great, although she'll have a good night a couple times a week.

Speaking of sleep, I've had a terrible time of it the past couple of weeks despite taking ambien.  My doctor put me on the slow release ambien as of today, so hopefully that will work.  My body has been physically hurting and emotionally I have been much more sad and anxious.  (And if the lack of sleep isn't causing that, it certainly isn't helping the situation!)  Please pray this ambien will work and sleep will return.  And pray for Frazer's sleep as well.  He generally never has an issue falling asleep or staying asleep - he is one of those people that falls asleep the second his head hits the pillow - so jealous of him.  But he's had a couple of nights of bad sleep lately.

All the girls are on spring break this week and we are surviving, despite not going anywhere fun and despite the rain.  (Much of the survival is due to the sweet people helping me this week!  But really, I could say that about every week!)  And tomorrow, Ann Carlyle and I are driving to Birmingham and on to Atlanta with my sister, Dawn, and her daughter, Lucy.  We will stay in a hotel one night (which is half the fun for the girls of course!) and go to the aquarium.  To say Ann Carlyle has been excited about this trip, is a vast understatement. :)  I'm hoping it will be a special time for us together - and of course, it will be super fun to be with Dawn and Lucy!  (Pray for Frazer's survival this weekend - and thank you to those helping him while I am gone!)

Oh - and will you please pray for us as we are trying to decide the best route for Elle with preschool and therapy?  I think she could really benefit from as much school and therapy as she can get; however, I don't want to over-do it and I also don't want to lose time with her.  But I worry that while caring for Milla, I cannot give Elle the attention and teaching she needs to maintain her abilities.  (And the reverse is true with Milla as well.)  They both need intentional interaction - not just me trying to make it through the day.  There are some potential big changes and decisions up ahead - just needing some wisdom and clarity with this.

Thank you for all the encouragement and help we continue to receive - the faithfulness to care for us in so many ways is always humbling and we are so, so, so grateful.  

I pray that we and you would remember and store away in our/your hearts the beauty of Jesus and His death and resurrection.  His beauty is so much brighter than the ugliness of this disease.  His love is profound.  Thank you, dear Jesus.

Much love to all of you!

Dana

The injuries :(

Ann Carlyle at the zoo with her friend this week

Elle-belle

Milla-willa and her untamable hair enjoying the great outdoors before the rain came :)