Wednesday, June 4, 2014

LeBonheur - Day 2

Thanks so everyone for praying for us and for Milla's doctor and care team.  I feel like we are getting a lot done that will hopefully lead to better care for Milla.

First things first...
We are starting the ketogenic diet.  Today.  In a couple of hours.  

The good news - Milla's doctor feels that we should know fairly quickly if this diet is going to work for her.  So after a month of trying it, if we haven't seen any improvement, we can pull the plug.  Frazer and I both feel like we can wrap our heads and hands around this now.  We try it for a month.  And then we are done if we want to be.  This seems so much more doable than the 3-3.5 month timeframe that was originally given.

Also, she really doesn't have much appetite today, so I'm hoping her 'fast' won't be too terrible.  It's actually just a fast from solid food - she will get a keto-milkshake type drink at mealtimes through tomorrow.

More good news - Milla's MRI was fine.  There actually are a few more 'sequences' that her doctor hasn't looked at yet, but everything else looked fine.  Her LP (lumbar puncture) was also okay but most of the tests being run with her spinal fluid are being sent off and we won't get the results for awhile - 2 weeks for some, 2 months for others.  He wasn't looking for infections but other possible clues into a possible underlying condition that is causing her seizures.

And even more good news - She had an eye exam today to look for irregular pigmentation in the back of her eye that could offer a clue to an underlying disorder but everything looked just fine!  

So, while we've had some great news today, it's still been a rough day.  Milla has felt pretty lousy until about an hour ago.  All of yesterday's procedures (particularly the LP) really knocked her off her feet.  She's been nauseated and in pain and constipated and feeling just terrible.  She fell asleep on me twice this morning and while I truly loved our snuggle-naps together, it's been hard to see her so sad and in so much pain.

But this afternoon, her medicine finally kicked in and drugs from yesterday's procedures have worn off and we got her bowels moving and her pain has died down so we are both much happier right now.  :)

Strangely, Milla's seizures have been on the very low side today.  And while I would be ecstatic if we were at home, I'm not super excited about it while we are here.  It may be because of her sedative drugs she was given yesterday (and then we gave her a whole days' worth of drugs in 4 hours last night).  She has had some but please pray that she has some of the 'questionable' ones - the ones that may be a different type than her norm.  

Also, we had a VERY late night (they didn't finish hooking up her EEG until about 10:30 so it was almost 11:00 by the time she fell asleep).  She was poked and prodded and stuck for about 8 hrs straight yesterday afternoon/evening and she woke up multiple times throughout the night because she was hurting.  So I guess it's really no surprise she felt crummy today.

But bottom-line, we had a very good, long meeting with Milla's doctor this morning and I've had some good meetings with our dietician as well.  I feel comfortable starting her new diet - for now at least!  The transition home will be a doozy, I'm sure, but I'm feeling brave about it this afternoon.  :) 

I humbly ask you to continue to pray for all of us.  Pray for Milla to have all her different seizures while we are here.  Pray for her little body as she continues to recover from yesterday and as we start this new way of metabolism for her little body.  Pray she won't get too sick and that she will eat what we give her.

Please pray that I will be able to learn as much as possible while I'm here and that God will multiply my time when we go home as it will take many hours of planning and preparing and cooking each day/week.  But like I've said before, we will be working closely with a LeBonheur dietician, so we won't be on our own.  

Please pray that Milla and I will both get a good night's sleep tonight.  We both need it desperately.  

Also, we are thanking God that the other 2 girls are doing great and having a ball with all the people taking care of them this week!  Apparently, they haven't skipped a beat.  :)  Frazer brought them up here last night with some Chick-Fil-A - it was good to see them for a bit.  Sweet Ann Carlyle was feeling so sad for Milla and wanted to call first thing this morning to see how she was doing.  Milla asked about both her sisters today multiple times.  Absence makes the heart grow fonder!!

And I just got word that she gets to have her IV taken out!  That will make sleeping easier hopefully.  :)  I just have to make sure she drinks a TON!

Well, I could probably write 400 pages more about all this, but I will spare y'all!  Thank you for EVERYTHING.  We do not feel defeated but uplifted.  We feel the love of all of you and of God.  Thank you for helping us through this time!
Oh - and we most likely will be going home Friday or Saturday.

Some pictures from the past couple of days...

Hanging out before all the 'fun' began yesterday

 Post-MRI and lumbar puncture...pretty puny

 Getting hooked up to the EEG

 A moment of happiness and playtime today

 One of her naps - sweet snuggle time

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