reflux is out of control and we decided to take her to Birmingham
Children's hospital as she can not keep any fluids down at all now.
After 7 long weeks in Birmingham Children's hospital Evie-Anne is now
stable and currently taking 25mils of feed per hour continuous 24/7
until she can have a fundoplication and a gastrostomy.
During fundoplication surgery, the upper
curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower
portion of the esophagus passes through a small tunnel of stomach muscle. This
surgery strengthens the valve between the esophagus and stomach, which stops acid from
backing up into the esophagus as easily and prevents constant pain and vomiting. This also allows the esophagus to
A gastrostomy feeding tube insertion is the placement of a feeding tube
through the skin and the stomach wall, directly into the stomach. Both
are surgical procedures which have to be done under general anesthesia,
and can both be done at the same time, taking approx 2 hours in theatre.
9 long weeks spent in Birmingham's children's hospital Evie-Anne
finally got her fundoplication and gastostromy surgery and was in
theatre for 4.5 hours. After a tough first few days, Evie-Anne recovered
well & quickly and came home just 5 days after surgery, she is now
slowly having her feed intake increased until she is on a suitable
amount, and hopefully gain some weight, be much more healthy and be in
We travelled to Southampton, to attend the 1st Annual 1p36 U.K & Ireland Deletion Syndrome Conference.
met the most amazing children & there family's, it was amazing
& inspiring to meet older 1p36 children & see what they have
achieved, and more importantly what Evie-Anne can achieve x
Today we celebrated Evie-Anne's
2nd birthday in style! We had a huge party at home, complete with
bouncy castle, music, face painting, even Minnie & Micky Mouse came
to wish Evie-Anne a happy 2nd birthday!!