Promised update.....

     We went to see a new GI doctor because J's pediatrician has been managing his GI stuff since we moved down here.  Which is fine but J developed some Granulation Tissue (GT) by his button.  We tried to treat it with topical steroids but it really didn't do anything except make his whole button area very angry.  We we to see Dr. Meyers in Atlanta.  He was very nice and very patient with J.  He was very friendly and asked a lot of questions so he could have J's complete picture.  He said the GT was not that bad and to try the steroids again but if his button got angry to send him pictures...too cool, no trip to doc if he has issues with it !!  Loved this.  He was fine with J's diet.  I asked about his constipation issues and he said the dose of Miralax was very small so we could go up to keep things "moving".  He is a bit constipated now, had to have 2 enemas but is acting fine so I am at a loss.....  He is down to one can of formula per day.  The rest is food and juice calories.  Today we are doing very thin stuff till his bottom gets rid of some poo. 

     The next day we went to the CRS Seating clinic.  Since J will always have endurance issues we are looking to get him a wheelchair.  He is quickly approaching 40 pounds and getting to big to carry.  Also we want him to have more freedom and independence.  So we had to decide if we wanted him in a power chair or a manual chair.  Both have their issues.  With only one arm that functions normally he would have to learn to use that arm to manipulate the chair.  And then there is power....He is 3 1/2 half, has no fear....do you see where I am going with this.  While I think he could learn to use it we also feared it would make him "lazy" and more dependent on the chair.  So we decided to go manual.  He will use the wheel on the left to steer and maneuver it.  They explained how it works but I am still unsure...lol.  This is a pic of a chair like he is getting....

     It is very low to the ground so he will learn how to get in and out of it.  I think that will happen fast because he has become a pro getting up and down off the couch.  It will take about 45 days to get everything submitted.....We can't wait to get it for him..... 

     We go to see the cardiologist on Sept 7th.  Nerves are already starting...Please.pray that his heart is unchanged....