Friday, June 6, 2014

LeBonheur - Days 3 & 4

Hey y'all - it's been hard to write an update yesterday and today.  And I'll have to be brief this afternoon, if I can.

So, Milla is still not eating and she's barely drinking anything at all.  She is very sickly, lethargic and dehydrated - she even refuses to walk and at times, couldn't even keep her own head held up.  And like I said, she is refusing all food.  I've been able to get her to drink a very little bit - maybe 8oz all day yesterday.  She had some IV fluid this morning to help her dehydration and fortunately still had her IV so we didn't have to go through all that again (getting a new one).

It's been pretty rough on me and Frazer as well.  It feels like we are watching her waste away and we can't help her.  Not to mention the physical, mental and emotional exhaustion.

As far as the seizures go, things are better - kind of, maybe (?).  But Frazer and I aren't convinced of the reason.  It may be the diet.  It may be all the sedation she got at the beginning of the week.  However, today, the seizures are coming back more and more as the day has gone on.  Her doctor has also decreased 1 of her meds slightly and taken 1 away completely today.  We are off the EEG monitoring (as of this morning), so I'm trying to keep count this afternoon.  It's hard to say why the seizures are increasing because so many variables are involved and many of those variables have changed simultaneously.  But I guess that's why we are here.

...I wrote the previous words earlier today before we met again with Milla's doctor.  And the plan has changed slightly.  First and foremost we have to get Milla to eat and drink on her own.  So we are changing her diet to a modified plan...basically we are going back to what we had originally planned on doing, which was a combination of the modified Adkins diet and the low glycemic index diet.  We are hoping to still see some benefits seizure-wise from these diets but also to have our girl back and out of the hospital.  And maybe down the line, once she is more familiar with these other kinds of foods, she would be able to 'easily' transition to the ketogenic diet.  It is also a possibility that she could respond really well to this less restrictive diet and be mostly seizure-free.  Only time will tell.   

So, we are still at LeBonheur tonight...well, Frazer and Milla are.  :) (I was able to come home this evening and will take the other 2 girls up to the hospital to visit in the morning and hopefully we will all get to be in our own beds tomorrow night.)  She did eat a bit of cheese before I left though!!!  She stopped because she was feeling sick, but it's something!

Please pray that Milla will eat and drink the things she needs to to maintain some of her ketosis (her 'new' way her body is metabolizing food) but really, at this point I'll take anything.  Pray for a decrease in seizures (which were very frequent and somewhat large as the day came to a close -meaning they were a longer and stronger).  The seizures were back up to, at least, her norm by 7pm.  Pray for her body to recover from this onslaught of procedures and changes and seizures.

We are starting to get to the point of trying things that have a lower degree of success.  If the diets don't work, there is a med we will try, but it's not highly successful...but then again, that may be just what her body needs.  Please pray about that possible solution as well.

I have to stop here so I can get some sleep, even though I could probably list at least 40 other requests. :) But let's just start with Milla getting healthy enough to go home.

Thank you for all your love and prayer and help this week!!!
PS - I am writing this in an exhausted state and on an iPad so please forget the (multiple -I'm sure) mistakes I've made!

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