Chilly No More!! (For now at least...)

Hey there!  I'm so excited to report that we have had at least 3 days of BEAUTIFUL, sunny weather!  As my friend put it, I am solar-powered.  :)  Some sun on my face and being outside is just what the doctor ordered!  I know rain is on the way tomorrow, but I am hoping that spring has truly sprung.  But you never know with Memphis in March - March is when we have had ice storms and tons of snow and all that.  As Elle says, "GO-way wain!" (Go away, rain!)

So Milla has done pretty good with the scheduled valium - maybe a touch more tired but not much - and her tremors and/or seizures are better!  

Last night, she woke up crying around 10:30pm and cried for about an hour and at one point she got out the word, 'help.'  Totally heart-breaking not being able to fix it.  Her breathing was fast and labored for a bit but recovered after awhile.  I feel like these times of discomfort and sadness, although few and relatively far-between, are becoming more frequent.  And I so wish she could tell me what is wrong and what she needs.  Please pray that we are able to comfort her and that she will not feel fear or sadness or pain.

Elle had a not-so-great week but the sunshine and outside air did her good over the weekend.  During the week, her rages (crazy fits) were 24/7 (or close to it).  I felt like an abuse-victim of verbal and physical assaults at the hand of my pre-schooler.  It was so discouraging and stressful and it definitely had caught up with me by the end of the week.  I felt utterly exhausted, beat-up and so worn down emotionally.  But fortunately, she calmed down over the weekend, although yesterday, she had a TON of 'checking-out.'  Again, not sure if it is seizure activity or lack of brain connectivity, but they were split-second episodes that were literally every 5-10 seconds pretty much all day.  We hate seeing her like that - goes without saying.  Please pray that we will know how best to treat her and help her. (Oh and on a super-encouraging note, Elle is still taking her meds well!!!!!)

I truly do feel like we are all a bit refreshed from the sunshine and playing at the park this weekend.  Ready to face-down another week!

Thank you for EVERYthing, dear friends and family!!!

This has given me hope and comfort this week:

"Keep the broken-hearted sure,

Clinging to Thy cross, our cure."

We cling to Jesus.

Dana

Ann Carlyle and Elle running around at the park :)

Chilly Monday Update

Good Monday morning!  It's chilly and gloomy here today so I'm glad to be done with some of the morning's errands and can hole up with Milla until I have to go pick up Elle from her little school.  

Milla has homebound school right now, so I have a minute to send an update.  And speaking of, I just have to say what a blessing her teacher has been.  Homebound school is a program through the city school system to provide education for kids who have special needs and who can't attend a regular school.  Milla's teacher is phenomenal. She comes twice a week for an hour on Mondays and Thursdays.  She is so dedicated to the kids she teaches and she cares for Milla so much.  These sessions help maintain Milla's skills as much as possible - and she absolutely loves it - so it's a happy part of the week for me too.  :)

So it's been a tough week, honestly.  (Although yesterday both Milla and Elle had a great afternoon - probably because Nana and Granddad came to visit!)  We thought that Milla's tremors were getting worse, but it turns out much of that activity was actually seizures.  So we are changing up her meds again...playing with the dosages of her current meds and adding scheduled valium.  I've been pretty worried about the valium but so far she's done okay with it.  We are upping the dose (of valium) and weaning back another med today, so time will tell how her body will handle that.

Her seizures have pretty much been under control for awhile now, so it was a bit of a blow to hear that her meds weren't working as well anymore.  It just chips away a little bit more of my heart.  I know things are always progressing and that Milla's and Elle's brains are broken but some days it is harder to deal with than others.

And Elle continues to fall and trip and lose her balance and we are definitely seeing drop seizures now.  (The rather violent ones that throw her body around.)  The seizures are all of 1 second long and fortunately, she is only having around a handful a day, but that number will continue to go up and it's just ugh.  We feel that she isn't having enough to warrant more medicine yet - we are going to wait it out for now.

Oh but one awesome thing I've been excited to tell y'all about is that Elle has been doing GREAT at taking her meds the past week/week and a half!!!  Thank y'all for praying and praise the Lord!!!  I can't tell you how wonderful this is and how much this affects my day (as she takes meds 3x a day) and my state of mind.  It's sooooo great.  Pray that this continues!

Ann Carlyle is doing well - I've said this before, but I'll say it again - her school (Christ Methodist Day School) is just plain awesome.  Her teacher is amazing.  She had a President's Day Program Friday with a couple speaking parts and she nailed it.  :)  We are so, so thankful for the opportunity to have her there.  And her eating continues to improve so thank you again for the meals!

Elle, Ann Carlyle and I have been dealing with colds this past week but we have all turned a corner and are on the up and up.  Amazingly and thankfully, Milla never got it.  I saw on the news the other day that the flu is apparently alive and well, so please pray for everyone's health, but specifically Milla, as she is the most medically fragile.  (Although, that girl is probably the strongest one of all 5 of us!!)

As always, I am ever grateful for you, our village!

Much love and coziness today!

Dana

We had a super warm weekend and Milla had an incredible burst of energy yesterday - check out this picture from the park with Uncle Kent!

Feelin' the Love

Just a quick update for the week - 

I had 2 of my oldest and dearest friends come visit me last weekend.  And it was so wonderful.  My soul got filled back up.  :)

And then Elle decided to flood the kitchen Sunday (we have hardwood floors in there) and my soul might have emptied out just a bit again.  Sigh.

Moving on...

We had a good appointment with the girls' neurologist last Friday and we decided to change a couple of things.

For Elle, we are trying to remove any medicine she doesn't absolutely need because she is resisting taking her medications.  A lot.  So we were able to take away the one for her appetite, since it doesn't seem to be working anyway.  And we tried to take away the melatonin (for helping her fall asleep) but that was a complete disaster so we put her right back on that.

But all in all, she's actually been better about taking her meds this week.  Pray that this continues.  Because bottomline, if she refuses to take her meds, our only other option is a G-tube.  And we are certainly not ready for that yet.

Elle's had a couple of good days and a few bad days this week with her seizure-like activity.  But because most of it is probably not seizures, but brain degeneration, we aren't changing any of her seizure medications at this time.  Although, she has had more of the drop seizures, so we might be headed in that direction.

Milla has been about the same with lots of tremors and some bad nights crying off and on.  But we increased one of her seizure meds, hoping it will help with the tremors and decreased another seizure med to counteract any side effects like tiredness, etc.  

The good news is that her tremors are better and she's not been crying the last couple of nights!  The bad news is that I've noticed she's a bit more tired (during the day) lately.  Hopefully this will all balance out though after a few more days.  We will see.

It's always science mixed with art with all these medications.  You want to find that balance between giving the girls quality of life, but not making them zombies.  And that fine balance is constantly changing as their conditions change.  Please pray we are balancing well!

Oh and a quick note about Ann Carlyle - she is liking the new food that y'all are bringing!  The new menu plan is working!  Already she is feeling more in control of her dinner because she is able to anticipate what these things will taste like.  And that has led to dinner-time being less of a battlefield.  Hallelujah.  So thank all you meal-bringers again for sticking to these recipes...you are contributing greatly to our quality of life!

That's about it, I think!

Happy Thursday to all and Happy Valentines Day in advance!  I'm certainly feeling the love - so thank you!! :)

Dana

Nothing like a morning nap with my Milla.  Soul - filled back up.

Orlando!

Hello all!  Just wanted to check in with everyone...

The big news this past week is that we took a 5-day trip to Orlando!  Some very kind and amazing people (to put it mildly!) flew us down to Orlando to stay at a beautiful resort down there complete with water slides, multiple pools, a lazy river, wonderful places to eat and even a Starbucks on-site!  And while we were there, we hit up SeaWorld and Discovery Cove. 

We decided to keep things somewhat simple so we didn't do DisneyWorld but we did some pretty cool things like swimming with dolphins and that.was.awesome.  Elle was technically too young to get to swim with them but she was able to touch one and get in the water for a quick group picture.  

The trip was definitely exhausting but it was worth it.  Amazing memories that we will always treasure.

Yesterday, we got back in the swing of things...back to school, work, schedules, etc.  Re-entry into the real world wasn't as bad as it usually is.  Yay!

We have an appointment with the girls' neurologist tomorrow - not sure if we will have med changes or not, but it's possible.

Elle is still losing a bit of function every day.  (She is actually doing better today.)  But her balance and coordination continue to decline and we are seeing some tremors, especially when she is trying to use her fine-motor skills.  Also, she is having more and more seizure or seizure-like activity.  She may be having drop-seizures now.  (These are the ones that we had such a hard time controlling with Milla...it causes an 'accelerated' drop or fall of the head, trunk or whole body.)  If it is seizure activity, then a medication adjustment or addition may help, but if it is just her brain not making connections due to degeneration, there's not much we can do.  That is a hard reality to swallow.  

Milla is also getting weaker.  We seem to be in a visibly declining state with both of them these days.  Too, she's been having some nights that she is up a lot whimpering.  Please pray that we can figure out the cause of this and/or something that will fix it.  We don't know if she is dreaming or is in pain or just needs a bit of comforting.  She's having a harder time saying the few words she can still say as she is weaker and her tongue tremors are significant as are the tremors with her whole body.  Her hands pretty much stay in a flexed position (wrist and hand at a 90 degree angle) when she is awake and many times one hand is clenched in a fist.  She has a hard time releasing her grip on things.  And she is starting to choke a bit more while eating.  We see her out-of-it more and more.  

All these things make us sad and fearful - goes without saying - so please pray that, while we keep a sense of the reality of our situation, we would be able to just take things one day at a time and not live in fear of the future.  That we would not forget about Ann Carlyle's needs and that, as we seek out those amazing belly-laughs from all our girls, we would soak up the snuggles and be at peace with each day.  That we would have the strength to show up and love and care for each other.  That we would remember that God already has our days numbered and that doubt, guilt and all-encompassing fear is not of Him.  That only by Him and because of Him are we able to live.

Oh and I want to also say thank you to all that are bringing us dinners and thank you so much for going along with our changes to the meal-plan.  We need some consistency for Ann Carlyle so that she will start eating better and with more variety - and at least with her, I can stop being a short-order cook.  (And please pray that she would comply more and more - without the battle.)

Thank y'all for sticking with us.  Having you by our side is life-changing.

Dana 

(Pictures below!)

PS - Thank you for buying the book!!!  The response has been amazing!!!  I'm so glad that it has touched so many lives.  :)

For those who need the link to it... 

http://www.amazon.com/gp/product/1519421532?keywords=voyage%20to%20the%20star%20kingdom&qid=1454621355&ref_=sr_1_1&s=books&sr=1-1

On our way and super excited!!

Our fearless and amazing helpers - Dana's sister, Dawn and our friend, Reg

Always gotta have our sister-almost-twins shot. (PS - I might have the most amazing sister in the world...)

Ann Carlyle lost her other upper tooth when we got to Orlando Her toothless lisp is adorable.  :)

Milla and the manta ray

Ann Carlyle and Elle watching dolphins

Mommy and Milla soaking up the sun

Silly sister time

Discovery Cove

Ann Carlyle swimming with the dolphin!

Frazer and Milla with 'our' dolphin - they are so velvety soft

Ann Carlyle and the unimpressed dolphin

Look how big that dolphin is!