9/19/18 - A Routine

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I wasn’t sure how today would go, but it turned out okay. I’m sure you noticed the nasal cannula for the Oxygen is back, taped to my face…I wasn’t staying at the right oxygen saturation the last day, so it’s on again for now. Not the worst thing. I had a rough time last night into this morning with the pukes and not sleeping, again. Definitely better than the other night, but still not doing the bets. The care team got rid of the Sodium Chloride supplement I have been getting, in hopes that nixing that will also help with the pukes. The thinking behind that is that it’s extra volume and also can be a little iffy to my tummy and could contribute to the reflux? Or something along those lines… We are happy, my family and I, that the care team is giving me the chance to get the G feeds figured out before jumping to other things. I’m still not getting enough nutrition (milk volume) as they’d like me too going through all of this, though. So, we will see how the next day or so goes. It’s so messy and complicated and simple and frustrating. Getting through though. Just another hoop to jump through! Other than all of the feeding stuff, I am doing great.

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We are trying to get my days and nights on track. It’s hard when you live in the hospital though, because you are constantly bothered. So, we are trying anyways. So, the plan is to try to stay awake a long while during the day time, play hard and feel sleepy at night. So, today I played so much! I bounced around the room held by Mommy, played on my play mat, sat up on my own, sat up in my Bumbo, played with my pony, with my ball and with the light up button block toy, too. We also read lots of books together. I love books. It was so much fun! I played so much that, I got grumpy and passed out for a nap. I think I’ll still sleep better tonight because of the busy day though, even with the nap.

I found out that I can stop Mom from turning pages on my books by reaching out and stopping the page with my hand. I like to look at the pictures longer than the story allows, so we read slower today so I could look better. I also learned how to push the buttons on the light up toy with my hands. I couldn’t figure out pressing and how to push the buttons, until today (before today, I always used my toes to make the lights go). It made me so happy. Well, that’s about it…time to sleep all night ha, ha. Hope so! Thank you for the prayers! -Heath

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