Thursday, March 10, 2016

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'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!

The injuries :(

Ann Carlyle at the zoo with her friend this week


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

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