Well I am writing this posting after Arin and I have returned home from her first hospital admission for the start of her NG tube feedings. Her GI doc did not like how little she was actually taking in a day- enough to sustain life but not enough for good growth and development so he wanted the NG tube and hopes to progress to the G tube and the niesson fundulplication this fall. She is on the pump 18 hours a day getting 17 ml a hour of a 24 calorie formula. She is tolerating this well and we hope that she starts gaining weight and growing as she is only in the 10th percentile for even WHS kids.
Arin this morning hanging out in the hospital
On a good note, Arin’s PT is very happy with how well she is holding and moving her hands and legs and working on holding her head. She turns heads every where we go including AI duPont hospital for kids where all her doctors are. So far at 3 months we have no signs of seizures and are praying that it stays that way. Arin also will see her orthopedic doc on Monday for her conjoined fingers and a surgeon on thurs of next week for the g tube and neisson fundiplication. Otherwise no new developments. Will post more as more develops.
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It’s amazing what good feeding will do for Arin, once the calories start sticking. She’ll be progressing quickly once her intake picks up!