Tuesday, March 20, 2018

Testing and Measuring

Little girl and Mama are hanging out at the hospital this week.  Papa's coming when he can.
 
 
Melatonin mellowed her out last night after a busy busy day of admission and blood work and seeing lots of people in and out of the room and a crazy meal that included a LOT of cream cheese spread on roast beef.
 
We were granted a PRIVATE room which is a total blessing. Being stuck at the hospital all week is hard enough without having to share a room.
 
Why oh why do they make hospital rooms with so many LIGHTS in them? Between being woken up to get her poor little fingers poked, we struggled to sleep in our brightly lit room. There are lights on all the monitors and machines around the room and with the light pouring in from the hallway - we might as well have not even turned the lights off.
 
So Papa was commissioned to bring duct tape and a towel so we can block the light coming in from the hall.
 
Despite sleeping rather pitifully last night, little girl woke up with a smile on her face.
 

This is a totally different hospitalization from last time. Two months ago her drug-induced raging sent everyone running from our room. This time I am having a hard time keeping the staff from wanting to take her home! It's been a challenge to keep well-meaning people from picking her up. She has no sense of danger and will just willingly go with anyone.


 
It's a week of training and testing. Testing for Mary - which means lots of blood draws and finger pokes and urine tests to make sure her body is handling the diet well. Testing foods - what she likes and doesn't like. What works and what doesn't. For us - training. Each meal requires exact measuring. Every meal has been proportioned out and we have to make sure to measure exact proportions. It's a bit daunting. There is no guess work and absolutely no deviation. If we want to add a meal we have to submit it to the dietician for approval. We have to learn how to do the finger pokes and urine tests. Did I say we have to measure everything to the nth degree?
 
She's doing well. She hasn't liked all the foods but she's been pretty good about eating what we stick in her mouth.The finger pokes are upsetting - especially in the middle of the night. But she's starting to get used to them. Thankfully, we won't have to continue the nightly pokes when we get home.
 
And the best part for her is that she doesn't have to be contained in the room. So we can freely run up and down the halls, singing and shouting. She can play in the toy room. She can wander around our room looking for trouble. All those machines that are in here... they have lots of tempting buttons to push!!
 
It's the beginning for us of a two year process. I won't lie. Measuring every single gram of every single piece of food that goes into her mouth for the next two years feels a bit overwhelming right now. But if it means seizure relief then we are all in.
 
Thank you to so many of you who have sent words of encouragement and prayers. We appreciate each one. Knowing we have people praying us through this week and beyond makes it easier to endure!!
 

13 comments:

  1. Just got a cravable keto cookbook you may want to check out in future.

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  2. Wow, no small feat. You will be rewarded.
    Jenny

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  3. I've been following your journey and praying for you all. I am inspired by your willingness to allow God to lead you. Thank you for your living example of Christ-like.
    In Christ. Heather Bryan

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  4. Oh my goodness...I love that smile. Oh my heart!!! Praying!!!!!

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  5. Hi Julia, Hope things continue to go well for Mary and you as you transition into this new diet and lifestyle. It makes me sad to hear of the trouble you are having with lighting in the room. One thing a lot of hospitals have worked on in recent years is having a more restful environment. Lighting is often at the forefront of those modifications. Unless Mary needs to be in full view constantly, I don't know why you would have to have so many lights on or the door open. There probably isn't much you can do about monitors or IV poles, but certainly they should be able to minimize lighting, especially at night. When I worked night shift, we all carried small flashlights with us. Unless there was a significant need for overhead lighting, and sometimes there is, the lights stayed off. I know you are savvy to the system, but if you haven't already, it may be worth speaking to the charge nurse who oversees the nurses on the shift or, if UVa has them now, a child life resource who can advocate for Mary's (and your) quality of life while hospitalized. This really sounds like a problem with an easy solution! I hope you can work something out or get home as quickly as possible!

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  6. I really hope this with the oil is an answer for her. I am actually starting Keto myself, but for weight loss / to bring my A1C down as I'm pre-type 2. So I am understanding of all the measuring and exactness, but you know what, once you get the macros down and understand what can and can't go in, you'll find tons of tasy Keto recipes online that I'm sure she (and even you all) will love. Way better than just sliced meat with cream cheese spread on it. I really really hope the electric storm in her little brain finds some calm. Hopeful!!!

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  7. Oh, that contagious smile :) :)

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  8. I am praying for you as I am sure all of the food adjustments are not easy. Mary’s smile is joyful and it makes me feel that the path you are on now is the right one. What an incredible journey and witness your story with Mary is! I am inspired.

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  9. So glad to hear about that playroom! What a great way to blow off steam and energy and just have a little fun. I hope the hospital's dieticians will find some more palatable recipes (nice creamy and tasty puddings??) soon and that all the tests will result in breakthroughs about how to help Mary. Would a fancy sleep mask (lots of sequins and sparkles) be helpful in combatting the excess light?

    Very best wishes from
    Susan in Kentucky

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  10. Thank you for the update- and the adorable pictures!!!!!!!
    Praying for the process and all of you,
    Kelly

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  11. I remember from the last hospitalization you were the one Julia she was using as a human pinch cushion to take out her frustration. Now look at her, you are the one she feels so secure to hold her in a strange place.

    Her smile is so, so sweet. You have come a long way Nalle family. You have in all the ways that count. Your love, persistence, prayers have won her over. The rest of the journey is tedious but you can do it. You have already done so much.

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  12. Christine LeveretteMarch 22, 2018 at 9:17 AM

    Continuing to pray for you all. I am humbled by your love and commitment to this precious child. May God grant her relief and may he strengthen and sustain all of you. Lots of love!

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Loving words from kind people make our hearts glad!

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