Update...Update...Update....

I was recently reminded I needed to post an update on here......

Zach's x-rays came back clear - no pneumonia (which I knew) the biggest relief was that all the views of his heart came back fine.

This week was also a big week as far as appointments go as well.....Zach had his monthly follow up with his dietitian where we heard "he is no longer labeled as FFT" and "that his g-tube is his life saver" He is now 26lbs 5oz and 34in -- This is HUGE all of this growth in only 4 months with his tube. The most weight he had ever gained in 3 months was not even a full 2lbs and height forget it most of the time he didn't even gain a full inch. We are to continue on the feeds the way we have them and the best news of all is we don't go back for 3 months -- another real big deal because we have had to be there monthly for the last 6 months.

He also had an appointment with his pediatric endocrinologist. He discharged Zachary. I have mixed emotions about this because of the things he said...like "yeah the g-tube could be masking another issue" and "his growth could only be because of the tube" and "when he turns 10-12 and his height is still an issue come back and we will discuss HGH" after being asked if RSS was a possibility he replied "Yes, it is but the geneticist will tell you more" and me saying to him "well if it is diagnosed shouldn't we start HGH?" -- "no, I don't believe you need to start them until 10-12" All of this contradicts all of the reading I have done on RSS and treatment, which states to start as soon as a diagnosis is given. Looks like we'll be finding a new endocrinologist - if we get the diagnosis on March 4th.

Zachary has also started all his re-evaluations for OT, PT, and ST. I should have all the information on those in the next couple of weeks.

Next week will be a week of rest (besides therapy of course ;-) and a nice visit from Tanya, Scott, and baby Ben. Then the following week will be crazy, with 3 different Dr appointments on top of the normal week of therapy.

Thank you all so very much for the positive thoughts and prayers!