Toby's belly is still filling up with air. At different points of the day it's bigger than others. The nutritionist called today and they are increasing the amount of food and calories he is getting. Now he will be on 38ml per hour over 20 hours instead of 36 ml per hour over 16 hours. She also seemed surprised that they were fortifying the breastmilk with similac..seems that when you feed a baby into his jajunum (small intestine), they need to have a type of formula where the proteins are already partially broken down. That news was a little bit frustrating. Oh well, we had taken him off of the similac on Monday anyway to see if it would help. It's made a small difference. Please continue to pray that this will get under control as it is affecting his breathing. His g-tube is also still building up granulation tissue around it. I'm praying that it will heal soon. A praise and huge answer to prayer!! We were approved for the Ohio Medicaid Home Care Waiver. A case manager is coming out next Tuesday to do a care plan. We're so thankful for this! I was also able to get out today and visit/serve lunch from our church to the school where I used to teach. It was wonderful to be able to see everyone. They have been so encouraging to us through all of this - sending cards, praying, etc. It was nice to be able to give something back for a change. Oh yes, and we have a night nurse on Sunday nights now too - she's the same nurse that does our Tuesday and Thursday nights, so now we have 5 nights covered, which is all we want for right now. Hopefully we will get more sleep now!! Good night!
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