We can’t believe it has been almost a month since our last visit to Children’s Mercy. Greyson is getting better with walking and has learned how to show us what is in his mouth, point to his teeth and tongue, and can follow directions such as taking things to his room. He has perfected throwing food and his sippy cup off his high chair tray and is becoming a bit pickier with his food.
To remind you (or catch you up)…last we learned Greyson developed a new growth in his shoulder behind his collarbone, which is unfortunate because now it is inside his chest cavity where it might (and has) interfere with other things. His right arm had stopped working and after an MRI, the doctors decided that it must be pushing on his Brachial Plexus (set of nerves that come off the neck and go down in the arm controlling all movement in the arm). They decided to drain the largest of the cysts thinking it was the main issue and then we waited for results.
Within the first week he had regained most use of his shoulder and elbow and within two weeks he was partially able to extend his pointer finger but since then his progress has seemed to plateau. He cannot extend his fingers or use his wrist.
We requested second (and third and forth) opinions from doctors at Children’s Hospitals in Boston, Cincinnati, and Columbus and another specialist in New York. Did I say we have been waiting and waiting and waiting….calling and calling and calling…. Trying to be nice and appreciative to any help they can give and see what options there are to help Greyson.
Finally last night, Dr. Spaeth, a doctor with Nationwide Children’s Hospital in Columbus, OH (specializes in Brachial Plexus injury and Lymphatic Malformations – what G has). When we were first contacted by her nurse it seemed like the perfect fit. She has a very positive outlook and we will talk with her in the near future and see what she might be able to do for Greyson. We met with Dr. Jiang, Greyson’s plastic surgeon in KC, and talked about Dr. Spaeth’s ideas as well as some from Dr. Adam’s in Cincinnati, OH Children’s Hospital. She is running a trial with a cancer medication that seems to be working for some with his condition. She is going to get back with Dr. Jiang to let him know if Greyson would be a match for her trial. We found a direct number to a doctor at Boston Children’s and will continue to “bug” them for their opinions.
We took Greyson to the Brachial Plexus Clinic today and met with a Rehab doctor and Occupational Therapist. They did a test to see if his nerves are sending messages to his muscles and determined that they are, but he needs more time to heal. We learned that when nerves get damaged they have to “re-grow” their connections and that rate is 1mm a day. They said for a child his age it could take between 3-6 months for that to happen. Unfortunately the test uses needles and you have to be awake so that your muscles will respond. They told us the sedative should hopefully keep him from remembering what happened.
The Occupational therapist evaluated him and they are giving us strategies to help him regain use of his hand. He has a wrist brace to keep his wrist in a neutral position so that muscles are not damage because his wrist lies limp and so that he doesn’t injure it worse falling on it.
We look forward to hearing from more doctors in the near future and will let you all know what we decide is the best plan for Greyson.
Brooke, Michael, & Greyson
To remind you (or catch you up)…last we learned Greyson developed a new growth in his shoulder behind his collarbone, which is unfortunate because now it is inside his chest cavity where it might (and has) interfere with other things. His right arm had stopped working and after an MRI, the doctors decided that it must be pushing on his Brachial Plexus (set of nerves that come off the neck and go down in the arm controlling all movement in the arm). They decided to drain the largest of the cysts thinking it was the main issue and then we waited for results.
Within the first week he had regained most use of his shoulder and elbow and within two weeks he was partially able to extend his pointer finger but since then his progress has seemed to plateau. He cannot extend his fingers or use his wrist.
We requested second (and third and forth) opinions from doctors at Children’s Hospitals in Boston, Cincinnati, and Columbus and another specialist in New York. Did I say we have been waiting and waiting and waiting….calling and calling and calling…. Trying to be nice and appreciative to any help they can give and see what options there are to help Greyson.
Finally last night, Dr. Spaeth, a doctor with Nationwide Children’s Hospital in Columbus, OH (specializes in Brachial Plexus injury and Lymphatic Malformations – what G has). When we were first contacted by her nurse it seemed like the perfect fit. She has a very positive outlook and we will talk with her in the near future and see what she might be able to do for Greyson. We met with Dr. Jiang, Greyson’s plastic surgeon in KC, and talked about Dr. Spaeth’s ideas as well as some from Dr. Adam’s in Cincinnati, OH Children’s Hospital. She is running a trial with a cancer medication that seems to be working for some with his condition. She is going to get back with Dr. Jiang to let him know if Greyson would be a match for her trial. We found a direct number to a doctor at Boston Children’s and will continue to “bug” them for their opinions.
We took Greyson to the Brachial Plexus Clinic today and met with a Rehab doctor and Occupational Therapist. They did a test to see if his nerves are sending messages to his muscles and determined that they are, but he needs more time to heal. We learned that when nerves get damaged they have to “re-grow” their connections and that rate is 1mm a day. They said for a child his age it could take between 3-6 months for that to happen. Unfortunately the test uses needles and you have to be awake so that your muscles will respond. They told us the sedative should hopefully keep him from remembering what happened.
The Occupational therapist evaluated him and they are giving us strategies to help him regain use of his hand. He has a wrist brace to keep his wrist in a neutral position so that muscles are not damage because his wrist lies limp and so that he doesn’t injure it worse falling on it.
We look forward to hearing from more doctors in the near future and will let you all know what we decide is the best plan for Greyson.
Brooke, Michael, & Greyson
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