On September 21st, Max had a GI appointment. At the appointment he weighed 25 pounds and was 2' 11". We were shocked that he was 25 pounds! Usually he hovers around 22-23 pounds. We thought he was feeling a little heavier. At the appointment we talked about removing his G-tube in a year. We are going to see if he can make it though cold and flu season without having to use his tube. We were so excited to hear such great news! When Max had surgery for his G-tube in April of 2007, we never would have thought that he would possibly have it removed before his 5th birthday. We thought he would have it for life! And yes, progress seems slow. But when you look at the big picture, he has accomplished a lot since he was put on a feeding tube at three months old and being NPO. I have to remember this when I get so frustrated with his eating! Currently he gets about 90% of his calories from drinking Kid Essentials Boost formula and he eats about 10% of his calories.
We also tried to take him off his reflux medication. About a week after we took him off the medication, his appetite started to decrease, was extra fussy, and grinding his teeth again. We put him back on his medication and seems to be back to himself!
I married my husband, John, in June of 2002. We have two children, Ava and Max. Max was born on November 15, 2006 with a rare syndrome (Rubinstein-Taybi Syndrome). I hope to educate others about RTS and meet families on the same journey.