Another day.
He hasn’t slept since this morning when he woke up at 8am. That is over 25 hours!!!! He is fighting it hard. He is cranky and overtired.
He got his last burst of steroids today for his lungs so that can contribute to being wired and not wanting to sleep. We went down more on meds today.
He has been sleeping through the night so hopefully he will sleep tonight. I got him to sleep a little bit ago but then he woke up gagging so my mom is currently singing to him and patting him.
Otherwise it was a good day. We got a play mat and PT and music therapy came in to play with him.
I hope you guys like the videos!! Sometimes those are more fun that pictures!
If you like them, check out my YouTube channel and subscribe! I posted more adorable videos from today!
I haven’t updated you on his stats recently.
Today is day 91. Officially been living back here for 3 months and 1 day. Maxley 321 days old and has spent 190 of those days admitted to the hospital.
He is 6.9kg or 15lbs 3oz and 26.75 inches.
That means he has gained 4.5 lbs and grown 4 inches. WOW!!
He is still on 25ml/ hour of 24 calorie formula. He has 4 broken bones, he is down to 2 IV’s. He is on 27 meds, some of which he gets several times a day. At 8am and 8pm he gets all of them.
Here his meds come delivered in a syringe. At home, we will be drawing up meds and washing syringes 24 hours a day.
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