Day 514

Today we went to a GI doctor in Syracuse. We found out a lot of information. Ava does weigh 10.6 kg = 23.37 pounds. We should be giving her Prevacid in her "G" port (stomach) because when there is a flair up of reflux, the prevacid that has been absorbed in the stomach will go into action. We have had many arguments about where that is supposed to go so at least that is solved. This doctor was extremely knowledgeable and explained everything to us thoroughly. He is going to have Ava have a "Gastric Emptying Scan" which is a little different than the scans she has had in the past. This will determine if she aspirates from refluxing. After we determine this and she how the scan is we can decide if we can go back to feeding in her stomach and if we can go down in the hours of feeding and eventually go to bolus feedings (like how she was being fed from birth and a year ago.) We also spoke with the nutritionist about the Peptomen Junior and she said that if Ava was eating breast milk and baby formula from the get go, she should have no trouble with Pediasure (which isn't a broken down feed). Peptamen makes Ava's stools extremely smelly and sometimes very loose. I told her it was decided in under 24 hours that Ava couldn't handle it. That was also during the time that she was getting the med Miralax that cramped Ava up. She said it should have been evaluated much longer like at least a week or more. The doctor went down to 20 hours of feeds and 46 ml of food. Same amount, just less time. If she does well, we may switch to Pediasure. July 7 is when we are supposed to have a scan but they do not know how to do it with a baby with a "GJ". I find it kind of scary since I can't imagine that a lot of normal babies get this done and no G or GJ fed babies don't in Rochester. I will have to call the GI doctor back about this next week. We also no longer have to give her Lactobaciilus. The doctor said if we didn't see a change that it sometimes doesn't help.

Thanking God for all of Ava's advances and praying for continued progress towards being vent and trach-free...