It's Scheduled - Columbus, OH...Here We Come

The nerve damage to Greyson's arm/wrist/hand has made some small improvements and we know that it can/will continue to heal up to 6 months after the initial injury. Besides his arm issues he is doing awesome. This past weekend it seems like he is trying to "talk" to us often blurting out what seem like full sentences in some other language even pointing and changing inflection in his tone. His walking is almost mastered and he seems to think he is ready to run. He still loves the lake and being outside. We took him to the park for the first time last weekend and he couldn't get enough. I had to travel this week for work and we FaceTimed on the iPad so that we could see each other. When he saw me talking on the screen he got excited, smiled, waved, blew me a kiss and even tried to hug and kiss the iPad. It was SOOO cute and made me want to rush home but work called.

But because there is still lymphatic tissue inside his shoulder area that can "flare-up" at any time, the new growth needs to be dealt with. We have a plan!!! In the last couple of weeks we have talked multiple times with Dr. Spaeth, the plastic surgeon that specializes in Lymphatic Malformations and Brachial Plexus injuries. She and Dr. Shiels, an Interventional Radiologist, from Nationwide Children's Hospital in Columbus, OH have collaborated and come up with a plan to help Greyson.
Our hope in sending Greyson's records to Nationwide Children's Hospital was with that Dr. Shiels would review the case and have some sort of suggestion. We feel like Greyson got even better than what we had hoped for when Dr. Spaeth got on board. Even though we have not officially heard back from Boston Children's yet, she attended a conference this past weekend and was able to share Greyson's case with other plastic surgeons that specialize in the same field, including one of the doctors from Boston. She said that no one had an alternate idea but all agreed she had a very challenging case on her hands.

In talking with her we are pleased with how comprehensive, overly cautious, and knowledgeable she is as well as her experience in doing surgery in this area and her concern for Greyson's well-being.
We will be driving to Columbus, OH for an appointment to meet Dr. Spaeth on Tuesday, Oct. 4. Greyson will have a round of sclero therapy with Dr. Shiels on Oct. 5. He could possibly have to stay the night in the hospital. On Tuesday, Oct. 11, Dr. Spaeth will do the complicated surgery on his shoulder and also do some work on the original growth site to remove more tissue. She hopes that Greyson will be ready to go home in 2-3 days but won't let us go until she is sure that he is doing well. Dr. Jiang with support Dr. Spaeth and continue to care for Greyson when we return home.
This seems like it is still so far away but we realize it is just around the corner. Thanks for all your support. We will continue to make updates to keep you in the loop.

Take care,
Brooke, Michael, & Greyson

Nerve Clinic Appt. & Second Opinions Successes

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