Tuesday, June 17, 2014

[Insert creative title here] - All I got is 'Update'

Hello everyone!  It's been a busy week and it's been hard to find time to sit and write an update.

Nothing much has changed...Milla has 'good' days and bad days.  The weekend was pretty bad though.  She had a bunch of longer seizures and had a few ones that looked different than anything we've seen (causing one of her eyes to move independently from the other) and those seemed to cause her some pain as well.  We are not sure if this has any significance yet.

Fortunately, we haven't seen that kind of seizure yesterday or today and she's actually been a bit better than she was over the weekend.  Her ketones were high this weekend (on the specialized diet she's on, that's a good thing), yet her seizing was worse.  And while she's been better the past couple of days, her ketones have been low.  It's a bit confusing and we are now wondering if this diet is going to be effective.

We've also seen some concerning things in her behavior.  Please continue to pray for her development as this weighs heavily on our hearts.

For now, we are continuing her diet...and as of tonight, we are waiting to hear from her doctor about our plan for the week.  He increased one of her meds again last night, but I believe we are maxed out on that one now.

I do want to mention a HUGE blessing and answer to prayer - we were able to send her to PDO last Friday.  I was only going to send her for a couple of hours - partly because I didn't know how she would do, but also because of the dicey situation with her diet.  She cannot have any of the typical snacks/treats given out to the kids so I wasn't sure about leaving her there for long...especially for lunch and because at the end of the day, they give out suckers, which she loves.  But she DID stay all day!!!  She did well with her food and while she was initially sad about not getting a sucker, she got over it quickly and was okay. 

There were so many things to be thankful for.  I felt so renewed getting to have a few hours of rest - and I was able to get a lot done that had been on my to-do list for quite some time!  And it was so good for Milla to be away from me and to be able to play with her friends.  She truly loves going to 'school.'  :)  Her little classmates treat her like any other kid - what a wonderful thing for my eyes to see - and that despite her speech (and possible other) delays, she can interact and play and have fun.  She still had a good number of seizures, but her sweet, amazing teachers (and the director there) love her and are graciously willing and capable to care for her in any way they need to.  I cannot say enough about these women that have loved us and served so faithfully all year...actually, they've been serving our little family for almost 5 years now, ever since Ann Carlyle was 5 months old.  (It's the PDO at Second Presbyterian Church - I highly recommend!!!!!!)

So, again, please continue to pray for Milla's development, for her safety and for healing.  

Please pray for our strength and endurance - mentally, physically and spiritually.  We are, to put it mildly, exhausted.

Please pray for wisdom and clarity of mind as we are seeking other possible avenues of treatment.  Pray that we would seek the Lord's will first and that we would find time to be sit still and be quiet so that we can hear Him.  (Hard to do in this crazy house!)

Thank you, as always, for caring for us, praying for us, loving us, helping us, generously giving to us in countless ways.  God continues to show us mercy upon mercy through you.

Much love-

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