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
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
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