Wednesday, June 17, 2015

Facebook update from Help Anton

Day +83 Baby Cole had his bone marrow transplant yesterday and everything went well. You can follow him at Prayers for Cole. We all wore our EB shirts to show our support for that sweet baby boy! The RMH had a lemonade stand today to raise money for the many adventures they will take the kids on this summer. The kids had a blast holding signs and giving people their lemonade. A professional cycling team came to the house today to hang out with the kids and their sponsors provided lunch for the house. It was sooo good! If you don't want to know details about Anton poop skip the next paragraph :) Anton's stool issues weren't improving but I remembered in the hospital it didn't get better until they stopped his tube feeds for 24 hours. I told the doctors this in clinic on Monday but they didn't really say anything either way. Out of desperation and sleep deprivation I decided to give it a try. I withheld Anton's tube feeds for 36 hours (36 ish). I restarted his feeds very slowly last night and I am happy to report he finally didn't wake up in the middle of the night and his poop is back to normal. He went twice today and it was soft but formed. I don't know what it is about withholding feeds but I think it gave his stomach enough of a rest and let the steroids kick in. It doesn't make since but for whatever reason it worked and I am thrilled!!! We went to clinic and got to see Kiira Kinkle!! That baby is sooo cute and she did great today when they placed her central line. I think that's my update for today, y'all have a good night! - June 17, 2015 at 10:35PM

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