Saturday, June 7, 2014

Going Home!!!

Praise the Lord - we are going home today!!!

And while this is certainly good news, we are hoping it is the right decision.  Milla is still not really eating or drinking but we are hoping that getting her home will help her to relax and stop her food strike.  She had about 1-2 tablespoons of shredded cheese and a serving of grapes this morning and maybe 1-2 oz of water.  But she is super excited about getting out of here and asked me if she could eat when she got home.  I'm sure she is thinking she will get to have any food she wants, and while  we are still restricting her food, she might be more open to it at home.

If by tomorrow, she is still rejecting everything, we will have to start letting her have anything she wants.  So we may completely be back on square 1 or we may be back on square 2 or 3.  We'll see.  But at this point, we are trying to get her healthy but also trying hard not to ruin what we've accomplished this week (not sure 'accomplishment is the right word here, but anyway...).

Milla is seizing a good bit and Dr. Wheless thinks that is because her ketones are getting low again.  Eating lots of fat = high ketones = hopefully a decrease in seizures.  

(And as I write this, I look at my always-chunky Milla-Willa in her clothes and see she is all the sudden, now, so skinny.  :(  It took getting her regular clothes on her to see the vast difference.)

So basically, all of this will be a lot of trial and error.  With a good heaping portion of wait and see (my favorite!).

I spoke with Ann Carlyle this morning about Milla not being able to eat all the things we are accustomed to eating and that she needs to be patient and helpful.  We talked about some of the specific foods Milla can or can't eat.  Ann Carlyle was very sweet about it and listened well...I'm hoping that talking about it a lot with her will get her on board as she is helping to take care of Milla and helping to make her feel better as well.

Please pray for this transition...I have NO idea how this is all going to play out.  But I know the Lord does and we are praying for Him to lead us.

Okay, gotta pack up the room so we can get out of here!  Milla was sooo excited to see her shoes and has them on and is anxious for her daddy to get here and take us home!

Much love,

UPDATE: I wrote this around 1:30 today.  It is 4:15 now.  We are home and Milla has eaten some cheese and grapes and drank a bunch of her 'milk' which is actually mostly unsweetened almond milk and some heavy whipping cream.  But this is AWESOME because the cheese is very low carb and the cream is very high fat.  So we are keeping to the modified diet and we are not forcing her and she is so much happier this afternoon.  

She is still seizing a BUNCH.  She had a really big one 2 minutes before we were walking out of the door at the hospital...fell pretty hard too.  We were both so apprehensive and scared anyway about taking her home and that did not help.  But we are home and she is putting things in her mouth that we want her to put in there and I feel a new sense of hope.  At least that we can get her back to where she was before we were admitted.  I'll take it.  For now at least.  :)

Also, we will be checking her ketones (in her urine) regularly for awhile and then maybe just once or twice a day when things get consistent.  We want a high number.  I just checked and they were in the lowest part of the acceptable range.  Obviously, we need them to be higher because she is still seizing a bunch, but I'm encouraged that even though she is having grapes, that her ketones are staying in the high-ish range.

Her color looks better already and although I still see knobby knees (which have NEVER existed on Milla), I have hope for tomorrow!

Thank y'all for praying so, so faithfully.  We love y'all!!!

1 comment: