Meet & Greet and Prep

First off, we must say thanks to Matt, our cousin that lives in Louisville. He opened his new home to us and cooked us two wonderful meals. With many meals out in our future, home cooking was just what we needed. Also, thanks to Kelly Avise and family...they packed us a "travel bag" stuffed with snacks, drinks, and puzzle books to help with the trip. And of course to Aunt Bobbie and Slick & Sandy, our neighbors, for holding down the fort at home keeping an eye on things.

Greyson met both Dr. Shiels and Dr. Spaeth earlier today for short appointments to prepare for tomorrow's procedure. It was very close to lunch, and he was tired, but he did great. The hospital is huge, but we seemed to find the radiology and plastics departments fairly easily.

  First Dr. Shiels did an ultra sound to check out the area looking for large cysts he will be able to sclerosis to help Dr. Spaeth when she does surgery next week....That is the primary purpose in doing sclero this trip. He thinks that he found at least 6 larger cysts (1cm or bigger) that he can treat.

Treating them will make it easier for Dr. Spaeth to remove the tissue. In the future he will treat the smaller cysts and he thinks he can help take care of the 100's of very small cysts and the 1000's of tiny ones. Treating the smaller stuff will create scar tissue which would make surgery more difficult if he did that now.

We will arrive at 6am tomorrow for an 8am procedure. He will be put out for 1 1/2 hours and will probably have 6 drain tubes. The plan now is to keep him overnight to get antibiotics in him and make sure all is well.

Dr. Spaeth was pleased to meet Greyson and to see/hear that there have been improvements in his ability to use his wrist and hand. She watched Greyson and took some pictures, and we talked about the surgery that will take place next Tuesday. She is predicting that surgery will take up to10 hours but possibly not that long.... It really depends on what she runs into. She is going to work on the new growth in his shoulder (around the nerves) and the original growth site as well as maybe in the top of his arm.

.....there is your anatomy lesson for the day :) please ask if you ever have questions about what is going on. We have learned so much going through all of this with Greyson and learn more with every conversation. We really like these two new doctors and feel like we are in the right place.

Take care and I will update tomorrow after we get settled in his room following sclerosis.
Brooke

On The Road

Off to Columbus....

It seems like we have packed up the entire house and I think we are ready to hit the road. We found that it is hard to pack for such a long trip when we really don't know how long we will be gone. But it is even harder to pack clothes for a trip when we are between seasons.

We are leaving today and planning on driving to Louisville, KY to stay with Matt, our cousin. Greyson has doctors appointments on Tuesday morning for a meet and greet and ultrasound to plan the sclero.

Sclero will be Wednesday morning and we have been told Greyson will have to stay overnight in the hospital. Our friends, the Newland's are hosting us over the weekend. They live in Indianapolis and are planning to keep us busy for a few days. Then we we'll go back to Columbus and be ready for Greyson's surgery on Tuesday, October 11.

Through this journey we will send updates to let you know how Greyson is doing. Wish us luck on these hours in the car and everything else. Thanks for all your support.

Brooke, Michael, & Greyson

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

Still Waiting for Second Opinions - Update

It seems that second opinions don't come quickly and we are practicing our patients. We have in requests to the Vascular Anomalies clinic at Boston Children's Hospital and Waner Children's Vascular Anomalies Foundation in New York. We also hope to get a request into a group of doctors at Nationwide Children's Hospital in Columbus, Ohio. With all of these doctors looking at Greyson's case we hope that someone will have a plan that is best for him.

In the mean time, Greyson's arm is improving little by little. He can now push off with his right arm and tries to use it most of the time. His wrist is still not working for him and his fingers don't have much strength but he can grab onto things and it doesn't slow him now much.

We are waiting for an appointment for Greyson with the Brachial Plexis Clinic (a group of doctors that work with kids who have nerve damage in their arm) in KC on Sept. 1. We took him to the lake today and he loved it. Next week Greyson and I will be going on his first plane ride to New Mexico to spend some time with Grandparents.

Take care. We will share more when we have more information. Thanks for the support.
Brooke (Michael & Greyson)

Monday Appointment

We just met with Dr. Jiang and have decided that sclerosis isn't going to be the plan of action today. Because Greyson hasn't had considerable improvement in his ability to use his arm/hand it isn't a great idea to cause more inflammation to the area and possibly cause more problems. Dr. Jiang feels that getting the second opinions from Boston and New York will help decide the plan of action. He is going to have the drain tube taken out in a few minutes and then we will go home. Now we wait and hope he is able to use his hand more each day. Greyson has an appointment with a nerve clinic on September 1. We hope to learn more soon.

Greyson doesn't seem to be in any pain. If you saw his smiling face you wouldn't think anything was wrong. His arm and chest area are a little swollen but not too bad. He is as happy as ever (has been the whole time) and has figured out how to work around his arm issue. He can use his shoulder but he can't lift his wrist or extend his fingers. He can grip with his whole hand but cannot touch his fingers and thumb together. His arm seems weak in general. What we have been told is that when nerves get damaged it takes time for them to fix themselves. We hope that will be less than more.

We will post as we learn more. While this is a surprise it is not unexpected for Greyson's condition. There is no way to fix what he has but we will deal with things as he grows. We do look forward to the day when he can tell us what is going on.

Thanks for everything.
Brooke, Michael, & Greyson

Home for the Weekend

The doctors have all been in for rounds this morning and here is where we sit...

We are breaking Greyson out sometime this afternoon. Dr. Jiang and the radiologist are good with us going home for the weekend since we have experience with drain tubes. We will monitor his use of his arm/hand and come back Monday for sclerosis if all is good. If not then we will come up with plan B.

In the meantime, Dr. Jiang is looking to get a second opinion from the Boston group and we are trying to get a third opinion from a doctor in New York. With the new growth inside the shoulder/collarbone area being so close to other things like nerves then they need to see what other interventions might be available.

We are waiting on one last consult from neuro and tons of paperwork so might me out of town before rush hour traffic. Greyson is in a great mood and ate like a horse this morning and is napping now. We will update as things happen but hopefully that means when his mobility is back and after sclera on Monday.

Take care of yourselves. Thanks again.
Brooke & Michael