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Strength to Care

Lessons from Matthew & Isaac – Our CHARGE Syndrome Journey

What’s in CHARGE in Matthew?

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

Matthew has colobomas in both of his eyes. A coloboma is like a cleft that goes through the eye…like removing a segment of an orange. How that affects the eye is different in most every case. Matthews pupils are off-center and elongated. In his left eye the coloboma appears to graze the maclea and therefore might immensely affect his vision. In the right eye it has just missed the maclea which creates a little window of decent vision, it seems to be down and to the right of him. Although he is vision impaired, many people do not notice as he compensates very well.

Matthew is also hearing impaired and has issues with the inner parts of his ears. He has a profound hearing loss in his left ear and a mild to moderate loss in his right. Matthew has hearing aids but he does not enjoy wearing them. The underdeveloped parts of his ears have to do with his semi-circular canals…this is where we get our sense of balance. Even though Matthew should have extreme difficulties with walking and balance, he does quite well.

Some of the other “C’s” in CHARGE have to do with cranial nerve issues. the cranial nerves aid in the ability to have facial expressions, smile and to effectively swallow. Matthew has a weak swallow and because of that he has been tube fed all of his life. He refuses to take any food by mouth even after years of feeding therapy. He possesses the ability to eat, he just has to convince himself that he can.

One of the more serious parts the Matthews CHARGE is of the condition of his heart. Matthew had a repair done at 3 months old to close a valve (PDA). What he is dealing with now is an enlarged heart due to a leaking mitral valve. There is a cleft in that valve and as he grows, his heart can grow weaker as he deals with this leak. We pray for discernment and wisdom as we face decisions on what would be best for Matthew, a repair, replacement or do nothing. As an update…we decided to do sometting about it. You can read about that journey here A Matter of Heart and the results (you can scroll back in time from this post) A shift in prayer

He has had surgeries to put tubes in his ears, on his nose to repair choanal atresia (a blockage/narrowing of one side) as well as an attempt to fix his un-descended testes.

The things above all have to do with his physical make-up. They all have an integral part of his mental make-up as well. According to statistics with people who deal with combined vision and hearing loss they are already at an 85% disadvantage to learn the way the general population does. It goes without saying that Matthew is delayed in his learning. Our largest barrier with Matthew is in the area of communication. Matthew is non-verbal. Not that he does not make sounds…he is a loud 11 year old who makes a lot of noise! He may not use words but he is very vocal and likes to make noise as he bangs things together. We are fortunate that he is extremely intrigued with sign language and we have been able to use that as our primary means of communication, along with him guiding us by the hand to what he wants. We are very excited with his recent interest in words and letters. We have been able to work with him on reading books and him copying the words from the books onto the floor with his letters. He will also sign any random word that we write on his chalkboard.

Other common issues that Matthew 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.