Greyson's Great

Well, thanks to a couple of Greyson's followers, I am finally getting to the update I should have posted last week. Sorry for the delay. Along with this post I plan to put up a couple of pictures so you can see how well he is doing.

It has been exactly one week since we traveled to Kansas City to see Dr. Jiang. Dr. Spaeth decided that the drainage had declined enough and he had been in the sling long enough that it all could be removed. We visited Dr. Jiang to make sure all was well. They were very impressed with how things have improved and how good the incision and his chest look. Monday was perfect timing with Halloween and he made the cutest garden gnome with two arms :)

Greyson has been using his fingers, wrist, and arm pretty well. He will get a bit of therapy to help get back full range of motion. Since his arm was in the sling for so long he still holds it down a lot and bent at the elbow but it doesn't seem to hurt at all and he can straighten it out when encouraged.

We will go back to see Dr. Jiang this Friday for hopefully the last doctors appointment for a long while. We will take him back for an MRI and ultrasound sometime in January.

In the mean time we hope you all have a wonderful Thanksgiving and Christmas. We will be in touch.
Brooke, Michael, & Greyson

Check in From Dr.

Dr. Spaeth called the other night to visit about how Greyson is doing. She continues to be happy with his great recovery. She said we could start reducing the amount of ibuprofen he is getting but she thinks the sling and drain need to stay in/on until next week. We will talk with her again on Friday to share the drainage amounts and maybe set a day to get the stuff taken out. Dr. Jiang will be taking care of the post op stuff for Dr. Spaeth so we will travel to KC to see him. Hope you are all having a lovely Halloween and Fall.

Take Care,
Brooke

YIPEEEE - Home Again

We made it to Carthage last night around 6pm. How nice it was to walk into our own home and to be able to sleep in our own beds with our own pillows. Greyson is doing great and loving playing with all of his toys.

Since things are going so well we probably won't make any updates until we go to KC to get the drain out next week. Dr. Spaeth will touch base with us on Monday or Tuesday to check in and see how things are going.

I am trying to get my laptop up and running again and hopefully will get to post more pictures soon.

Take care,
Brooke, Michael, & Greyson

On the Road (finally)

Greyson saw Dr.Spaeth again today. She said his blood work was fine but since the drain was still going fairly strong she decided to leave it in and will have Dr. Jiang in KC take it out in the next week to two weeks. He will wear the sling for two more weeks while the muscles in shoulder heal. She gave us some supplies, prescriptions, and a hug and we were out the door. Some quick packing and cleaning of our room and we were on the road by 3pm heading to Louisville for the night. Hope to be home Wednesday sometime.

Thanks for all your support.
Brooke, Michael, & Greyson

Another Day

Greyson went to see Dr. Spaeth today. Both drains had been slowing down considerably since Friday but #2 (they are labeled), which is the one behind his peck muscle, decided to pick back up this morning. she decided to leave that one in to see what it does but took the other out. She had his blood checked (just a finger poke) and she will let us know his hemoglobin level when we see her tomorrow at noon. We will find out then what comes next... Could be sent home with drain, could hang around and have ultrasound to see what's going on, or could take the drain out and wait one more day to make sure all is well.

Greyson is active as ever and she thinks it could be just that movement has gotten things moving around. He is doing great with the sling and doesnt fight it at all. He has been falling down some mostly because he can't catch himself with both arms and he is going 90 to nothin. He does have a hard time getting up from the ground but he still thinks he can crawl into his stroller on his own. He still gets ibuprofen 4 times a day for inflammation but we don't feel like he is in pain.

We spent a good part of the day on Saturday window shopping and filled Sunday with a trip to COSI, the science museum. They had a Dora exhibit that encouraged kids to learn while being active. There is also a very nice play are for kids under 5 that had a very nice water table among tons of other things to climb on and play in. Most of the other exhibits we cool for Michael and I to see and he just hung out in the stroller for those.

Hope you saw the pictures I posted this weekend. Took me forever to figure out how to do that since my computer is still dead and it is hard to use the computers here at RMH since they are pretty locked down.

Will post again after the appointment tomorrow. I am heading downstairs to do some scrapbooking (a volunteer brought all there stuff for guests to use).
Brooke

Back at RMH

Greyson was discharged at noon today and we headed back to Ronald McDonald House to hang out for the rest of the day. We napped, played, did laundry, and enjoyed two meals here. We also walked a block down to the CVS to get some ibuprofen for Greyson. That and an antibiotic are all he is taking.
Tomorrow we may go to the Science Center and do a bit of shopping. Nothing major on our to-do list for the weekend. Greyson does need a few button down shirts since we can't put regular t-shirts on right now.

We are hanging out here until at least Tuesday morning. He has an appointment to get the two drain tubes out Monday at 2:30pm. Dr. Spaeth doesn't want us to leave before Tuesday morning to make sure everything is fine before getting on the road.

Thanks for everything. Enjoy your weekend.
Brooke, Michael, & Greyson

Thursday - 2 days after

I know, I know....there should have been an update before now but Greyson is doing so great that it turned back into a two man show. He is keeping us hopping and we are trying to find thing to keep him busy. We went on two walks (in stroller) and also went to the toddler playroom. We took him outside to enjoy the fresh air as well.

We knew he was getting back to himself when he was standing in his bed first thing this morning. He has been going strong since then running around the room, hiding in the curtain, and climbing around and over anything he can. He has already figured out how to work around one arm being tied down. Since the doctor had to detach 2 of his muscles to clean out all of the growth and then sewed them back in place he isn't allowed to raise his right arm. She feels like it should heal in a few weeks and then he will get to use it again. You are going to be amazed when you see what it all looks like.
Dr. Spaeth and her resident came in to change the dressings and make a new sling. She callsthe sling a pretzel and thinks I will be able to recreate it when we go home. I plan to take pictures and video as she does it next time for future reference. I hope to post some pictures tomorrow from the computer lab at RMH.

Dr. Spaeth plans to discharge him tomorrow. She may take drains out tomorrow or maybe next week. We will stay around either way until next week. She doesn't want to send him home too soon and then have there be problems. She also had us bring in the car seat to plan how we well cushion parts so the straps don't hurt him. His incision at his neck is going to be close to the straps as well as the shoulder incision. He doesn't act like anything hurts now. He hasn't had any morphine since Wednesday night at 8pm only Motrin. It's amazing how tuff he is. What we learned is that it is because he has no perceived perception of pain so his brain doesn't tell him he should hurt like we adults tend to do ;)
Michael and I are split again tonight and hopefully will each get a good nights sleep. Michael headed to Ronald McDonald before 10pm and that gave me some time to post this update. Today we each took advantage of Greyson's nap times taking turns on the couch but are still a bit tired. The room is so small that only the coach, crib and tray fit in the room. We even fold up the stroller to have more room. We saw pictures of the new hospital rooms; they are beautiful and big. We will be making sure to schedule future visits here after it opens.

Sleep well...I know we will ;)
Brooke