Sunday, July 13, 2014

Update - It's a Good One!!!!

Hello!  Thank y'all so, so much for your prayers last week as we got in to see Milla's doctor.  It's been an insanely crazy weekend (truly no exaggeration) and I haven't had a moment to spare to send an update out.

So the appointment was really great in that I felt that we had some really good time with Milla's doctor and were able to talk through some big topics of concern.  Unfortunately, we still don't know a whole lot - we are still waiting on some genetic test results and we are still very much in the dark as to why Milla is having these seizures.  There is also a possibility that her seizures are a symptom of something bigger.  But her doctor is really committed to getting to the bottom of things and that is comforting.  If the pending genetic test doesn't reveal anything, then we will do a more detailed genetic study and also, the MRI Milla will have done in a few months might be helpful in revealing a cause of the seizures.  

But I have saved the best for last.  :)  

We were able to stop the ketogenic diet!!!  And here's the most awesome, awesome, awesome-est part...Milla has been doing great!!!!  And by great, I mean G.R.E.A.T.  Her seizures have been in the 5 PER DAY (if that) range and they have been the tiny ones!  Her speech has been A LOT better too!  And her tremors!  And she is been in such a fun, playful and active mood!  I can't stop using exclamation points!!!  It's amazing and wonderful and so encouraging!!!

She transitioned off the diet seamlessly and like I said, has been doing so well.  I have to mention, too, that we started a new med Wednesday night...but her doctor said we wouldn't see any change for 3 or 4 days at least and that it will take us 3 weeks to get up to her full maintenance dose.  So, we don't know if it is being off the diet and/or starting the new med but God has laid His merciful hand on Milla's brain and body and has given her a beautiful 4-day respite from her seizures.  We, of course, pray that this will last, that we have finally found the perfect drug cocktail to curb her seizures.  But even if not, we are so very thankful for His goodness.

Please pray that the seizures are gone for good...but (not to be a Debbie-downer here), Milla has a history of doing really well after starting a new med/changing a dose and then going back to her norm.  So we pray this will not be the case this time - we are trying to be hopeful.  However, my heart is a little fearful too as I feel like that this can't be 'real'.  

But regardless of what God has in store for Milla and us this week and beyond, we know His love is never-ending.  And so really, that is where our true hope lies.  We cannot hope in science or doctors or meds or that 'everything will just be alright.'  Our hope is built on Jesus, that He died and rose again, and actually, that everything will be alright, when He returns and all the brokenness of this world will be no more.  

We are so very thankful to be off the diet - to have that heavy, heavy burden removed from our lives.  It has been so freeing and makes my heart rejoice to see Milla eating normal snacks with the kids at PDO or in the church nursery...or even just at home with her sisters.  She is, however, still eating shredded cheese much of the time - we've created a cheese monster.  :)

Please continue to pray for us as we are busy bees working on the house, getting it ready to list.  Continue to pray that God brings us a buyer SOON.  I'm starting to really feel the pressure of getting everything done and clean and pretty and keeping it that way.  Pray that the inspection on the new house Tuesday will tell us all we need to know in order to move forward (or not) and close at the end of the month.

Thank you, as always, for being so faithful in your prayers for Milla and our family.  It means so, so much to us....more than I can ever express.  And the meals have been INVALUABLE.  I cannot thank you enough.  Really.  Really really.

And thank you for all the support we have been given with childcare help.  What a tremendous blessing this has been!!  I might be lying in a heap somewhere passed out from exhaustion and stress if we hadn't had this help...

Oh - and I almost forgot - Milla starts speech therapy Thursday!!!  And will start occupational therapy soon!  This is more great news and an answer to prayer - we actually feel like progress is being made after so many months of nothing working for Milla's seizures and Milla not being able to have the therapy she really needs.  Please pray for a good connection with her therapists as this is so important for any child's success with therapy.

Ok, I'll stop now - but one more THANK YOU for loving on us.  :)  

Much, much love back to you this Sunday evening - Dana

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