We recently had an appointment with almost all 21 doctors and therapists of Isaac's.  I must say our family is extremely blessed to have so many intelligent minds working with us.  They discussed different procedures they want to go through with in August if we still can't get Isaac off of oxygen during the day time.  Isaac's diagnosis is in question right now but for now he is still said to have Cornelia de Lange Syndrome (CdLS) until proven differently.  We are enrolling Isaac in a medical study for a newly discovered syndrome called CHOPS. CHOPS was discovered by a genetic specialist named Dr Kranz, in Philadelphia. There are currently only 3 people in the US who have been diagnosed with CHOPS. If Isaac does have it he will be the youngest person to be diagnosed and would prove a great resource for the study. We will be going to Philadelphia soon to have Dr Kranz examine Isaac and do some genetic tests. Dr. Kranz is world renowned for his knowledge in CdLS and is considered the foremost authority on the syndrome. People are referred to him from all over the country by geneticists who suspect CdLS to diagnose their children. Because of that he had also become a foremost authority in things that look like CdLS but aren't. That is how he discovered CHOPS. So, even if Isaac does not have CHOPS or CdLS Dr. Kranz will be the best person in the world to tell us what he does have.
Isaac's walker has proven to help him developmentally in more areas than we could have imagined.  Since he started walking with his walker, he is babbling more, he is much more physically active, and he seems to be more curious about everything around him.  He puts a lot of objects in his mouth, unfortunately food is not included in those objects. He does not like eating and usually gags  or does a little head shaking dance to say "no thank you".  In order to help him have more of a desire to eat we let him play with as much food as possible.   He is completely off of fructose so his diet is very limited between the texture and the content of food he is aloud to eat.  Non the less, with his new blenderized diet that he eats through his G-tube, he has started gaining weight again which makes everyone happy.
Also, it seems as though Isaac does not have 3 teeth. He has all of his teeth that he should have for his age except for the lateral Incisor and Canine on the bottom right and the Canine on the bottom left.  There are no signs of these teeth even starting to come in. They will be doing x-rays soon to see if these teeth are not there or have simply not come in yet.  That's all we have for now.  Till next time, we hope all our family and friends are doing well.