Saturday, May 31, 2014

Quick Update

So I spoke with Milla's doctor last night, because the day ended up being pretty bad. She easily had 200 seizures in the 12 or so hours she was awake.  (And Thursday wasn't much, if any, better.)

He wanted us to give her some valium to help her brain calm down - hoping 1 dose would do the trick.  And it has up until this afternoon.  We may have to give her another dose this evening.

But the main reason I am writing is because he wants to try to get her into the EMU Tuesday instead of Wednesday - he's pretty worried about her condition.  He was 99% sure Monday was impossible but was hopeful that there would be a room available on Tuesday.  

Please pray that a room will be available.  Please pray that we will be able to get all the logistics lined up (which I think we have - THANK YOU to amaaaazing friends that are making this happen).

We are kind of scared about what all this means as well.  Please pray that we won't jump to conclusions in our minds and that we will have calm spirits as we await Tuesday or Wednesday.

Oh - and not sure if it has to do with the supposed virus she had a couple weeks ago, but Milla's 2 front teeth are turning dark.  Fortunately, they are still her baby teeth, but not sure what this is all about.  :(  Just sad that there's one more thing she has to deal with...another doctor visit, etc. 

We love y'all,

Friday, May 30, 2014

Memorial Day Week

We had a great Memorial Day weekend mostly spent at Khaki and Poppy's pool (Frazer's parents).  Milla adores water and Saturday, the pool was the perfect anti-seizure medicine for her...we saw only a handful of seizures (and this was an all day affair)!  Monday, she seized a lot but had a wonderful time anyway jumping in the pool (all by herself!) over and over and over and was awesome.  :)

Milla really had 4 or 5 pretty good days after restarting the Onfi last week, but by Monday, she was slipping quickly back into her normal.  I'm thankful for the relatively long reprieve from her myoclonic seizures, although I suspect that she was still having many absence seizures even during her 'pretty good days'.  

So this week has been much of the same as always - lots and lots of seizures (way more than 100 today and yesterday) and yukky side effects.  She's been acting sad and mad much of the time as well.  There are times that she is happy and giggling and running and playing - I know she is still in there - it's hard to think of her being trapped inside her own broken body.

Milla seems to be getting even worse today.  I took the girls (by myself again - go me!) to the Children's Museum Splash Park this morning and as Milla was sitting on the ground eating her lunch, she suddenly fell straight back and nailed her head on the pavement.  Hitting her head caused yet another cluster of seizures, but she was okay.  It's so discouraging that even sitting on the ground is not a guarantee for safety.  This was one of those times I felt she was a prisoner in her own body.  She wanted to run and play (and she did a bit later) in the sprinklers, but her seizures/feeling yukky prevented her from doing so for much of the time.  She is also dropping and throwing things a lot (due to seizures, not hissy fits - although that happens too!).  It's very upsetting to her when she drops her snack or her drink or her stack of blocks, etc she is holding.  It all makes her momma pretty sad too.  Sometimes I fear she is disappearing inside herself and I might lose her forever.

We go into LeBonheur's EMU Wednesday.  I'm wondering how Milla will respond to this - please pray that she is willing and peaceful, especially as she is getting all the wires put back on her head.  I know I wouldn't be the happiest camper having to do this all again just a few weeks after the first round.  But kids are often more resilient than we adults are.  :)  

We are also planning on starting the ketogenic diet in July.  This may change after next week's EMU stay, but for now, that's the plan.  Please pray about this - I am extremely overwhelmed by this.  And extreme doesn't even begin to describe how strict and regulated this diet's very high in fat and almost no carbohydrates.  Every single part of Milla's food will be measured to the gram...and she must eat every single thing I give to her.  She will have to be hospitalized to start the diet, where she will have to fast for 24 hours before they slowly start her back on these special foods.  Switching the body's metabolism, as this diet will do, is no picnic.  And I've been told that she will be very, very sick for a couple days...again, another reason she will be hospitalized.

About a third of people that try the ketogenic diet to control seizures are successful and are 90-100% seizure-free.  Another third see a 50% improvement. And the remaining third of people either don't see enough improvement to continue the diet or they just can't continue the diet because it's too strict.  

If we do the diet, we will try it for about 3 months before deciding whether or not to continue.

Again, very overwhelming.  I do not like to cook, but I will be making almost 100% of Milla's food from scratch.  Doing this diet will be a full time job in and of itself...the planning, the measuring, the monitoring.  And even by a 3 year old's standards, Milla is very picky.  I fear all of it.

But until July, we are going to try to slowly transition Milla into this diet by trying a combination of the Low Glycemic Index diet and the Modified Atkins diet.  This will give us some kind of indication of whether or not Milla will be able to follow the Ketogenic diet...and it will ease her body and her palette into the transition as well.  We are working closely with a dietician to help us do all this - thankfully, we are not on our own!  I spoke with her on the phone the other day and we will meet while in the hospital next week to discuss all this in more detail.  So far, I have switched her milk over to mostly unsweetened almond milk and she hasn't skipped a beat!  Score 1 for us!

So that's the scoop.

Please continue in your prayers for Milla's safety.  

Also, be in prayer for the other 2 girls as I will be gone from them a lot next week and they will have multiple caregivers while Frazer is at work.  (THANK YOU to all the friends and family making this possible!!!!)  Pray for the caregivers too.  :)  I am praying for easy, fun times for everyone!

There are a lot of things floating around in our heads right now - possible paths to take - please pray for wisdom and clarity for me and Frazer.  We are trying to navigate these waters as best we can - trying to make the right decisions medically for Milla.  For example, this ketogenic diet...will we need to pull the plug on it?  What other options are out there and do we try them?  It's easy to get stuck in my head, thinking I control all of it.  But I don't control it.  And really, letting go of that control (rather, the illusion of control) is very liberating.  Thankfully, we have a God that knows all, controls all and loves us more than we can ever comprehend.  I have to re-center myself around that truth every day...okay, well, multiple times every day.

Thank you to all of you for being such faithful advocates in prayer for us!  And a special THANK YOU to all of you who I have never met but who are praying so faithfully for us.  We have been forwarded many of your sweet encouragements.  My cup runneth over and over and over.  I wish I could give everyone a big hug and express how much this means to us.  What a beautiful Saviour we have that unites us through prayer.  Truly beautiful.  We love each other because He first loved us.

Happy weekend to all - may the Lord bless you as we have surely been blessed.  Much love!

Dana (and Frazer)

Friday, May 23, 2014

My Very First Post!

We've actually had a pretty good day, so I dug in and got this blog started.  Yay me!  (And have mercy on me if I do this wrong.)

Blogs are always more interesting with pictures, so here's one of the girls just for kicks...

I'll go ahead and post the latest update I sent out via email yesterday:

It's been a crazy few days to say the least...full of uncertainty and fear.

The good news is that Milla's swollen mouth was due to a virus and it has cleared up for the most part.  We are so thankful it didn't have anything to do with her seizures and/or meds.

Dr. Wheless decided to take her off of the Onfi Monday evening because he felt it wasn't doing anything for her seizures and because it was causing many of her side effects.  But it turned out that it really was keeping a lot of seizures at bay.  Within 12 hours, she was having well over 100 seizures in a 12 hour period and some mild convulsive seizures as well.  She slid downhill fast (although the screaming fits were gone and she slept very well through the 2 nights she didn't have the Onfi).

So, last night, we put her back on the Onfi and today we have seen marked improvement in her seizures (she is basically back to where she was before stopping the Onfi).  She is having screaming fits again and was up a few times last night, but her seizures are much smaller and less frequent than they were the last couple of days.

Also, we are going to be admitted back into the EMU at LeBonheur for EEG and video monitoring on Wednesday, June 4th.  We were originally told that we would be going next week, then that we wouldn't be able to get in, but then yesterday afternoon, we received a call that someone had cancelled their EMU stay, so we got their spot.  We were praying fervently that the EMU would be available next week, and even though we have to wait a week longer, this is an amazing answer to prayer.  Thanks be to God!!

I won't get into all the nitty-gritty details, but we were pretty despondent by yesterday afternoon with the plan of action for Milla.  But God heard our cries for help and while we are still weary and worried, the new plan has given us a bit of hope and comfort.  The heart-wrenching anxiousness and hopelessness has gone today.

Please pray for safety and a speedy 2 weeks as we await the EMU.  Please pray that Milla will show all her different types of seizures while we are there.  Please pray that her medical team will gain all the knowledge and clarity they need in order to treat her.  Please pray for healing but if that is not God's plan, that we would find the right treatment for these seizures so Milla can be (at least medically) seizure-free.  Please pray that we would trust the Lord and lean on His promises - that He cares so deeply for His children.  Please pray for perseverance for me and Frazer - we are so weary this week.

And here's a picture of the little polka-dotted peanut herself...

Thank you to all for your prayers the last 24 hours!  I feel a certain rejuvenation today and Milla had a great morning (seizures were on the lower end).  

So, I actually took them to run around Mud Island today ALL BY MYSELF (which never happens these days).  Uncontrolled seizures + a sometimes-obedient-and-very-independent 2yr old + 3:1 ratio = absolute disaster in open places.  

And we had a great time with no big incidents, which is amazing in any family with littles!  So while the afternoon has been a bit more challenging, I am praising God for the little respite we had.  Happy Friday to all!

(Why is Elle always looking off into the distance...?)