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!!