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)

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