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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

What’s in CHARGE in Isaac?

The 4 C’s of CHARGE are explained in a post written a while back 4 C’s of CHARGE

Isaac’s page will be updated frequently as things are changing quickly as he grows and more of the Isaac puzzle is put together.

Isaac has colobomas in each eye. How a coloboma affects the eye is different in almost every case. Isaac’s colobomas are not visible without magnification. We are optimistic that his vision, even though impaired, will be decent. Updated: Isaac’s coloboma’s are present, but very slight. His vision is actually fairly good.

Isaac is hearing impaired, based on early diagnostic BAER testing. He is preliminary tests show a profound hearing loss in his left and a mild to moderate loss in his right. Isaac shows a classic CHARGE pattern in the way his outer ear is formed. We are not sure at this time the make-up of his middle and inner ear. We will know more after testing to take place in the future. What we do know is he responds to our voice and to other noises around him. Update: Isaac is true to how Matthew is with his hearing. Even though he tests bad he hears better than he should.

Isaac has had a TEF/AE repair…a trachealesopagas fistula and a esophageal atresia repair is the correction of an esophagus that begins at the neck like normal but stops in the chest, short of the stomach. The rest of Isaac’s esophagus was attached to his trachea directly between the branch of his two bronchia tubes. The TEF repair consists of removing the esophagus from the trachea and attaching the two ends of the esophagus together. Isaac has had between 15-20 dialtions to keep his esophagus open at the repair site. As he grows these have been fewer and farther between. In the beginning they were weekly. Update: Isaac’s repair site remains to be very good. He is now 3 years old and does not eat by mouth.

At this time we do not have enough information to conclude how his cranial nerves have been effected.

Isaac does have a cleft lip, one side and a cleft palate that begins at the lip on one side but opens up to both sides in the back. He has had the first of 2-3 lip and nose repairs and has had the first repair to a very challenging palate reconstruction. As of this time (5/14) he will have another lip/nose repair sometime during the summer and they will repair a small hole in the palate that did not heal properly. Update: at this time we are done with surgeries until he is older.

We are grateful that Isaac had only the normal issues as a premmie with his heart…all are nearly resolved. He does have a few “plumbing” issues with some vessels but nothing that would warrant any action.

Isaac had a tracheostomy at 6 weeks old to help him breathe easier due to laryngomalcia, tracheomalacia and bronchomalacia…a “floppy” larynx, trachea and bronchia tube.

Isaac has also had a NISSEN wrap done to the top of his stomach to eliminate sever reflux. Update: the first NISSEN failed and he has now had a second one. We are still monitoring that one as there appears to be some leakage.

He continues to have frequent botox injections to his salivary glands to reduce the amount of secretions he produces.

Other common issues Isaac and other CHARGE kids face are sleep disorders, OCD, being harder to sedate, high pain tolerance, inability to regulate body temperature and  autistic like behaviors. Although the behaviors mimic autism, they have been completely isolated and considered CHARGE like behaviors, as they are uniquely different.

Although he has had several setbacks due to hospital stays and surgeries, he continues to thrive and enjoy life. He exudes JOY. He definitely lives up to his namesake…Laughter