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

In A New Room

We are finally in a regular room. Greyson has been doing good all day but we had to wait for a room to open. He has been in some pain but his meds kick in quickly and don't zone him out. He is getting more active and has sat up a handful of times. He really likes to roll onto his stomach to sleep. He fights the sling a bit and wants to mess with the tubes and IV ports. He is finally free of his "tethers" so I am sure he will get more active by the minute.

We are very tired and are heading to bed early. I am going to Ronald McDonald to sleep since there is very little room here. They told us again about how nice the new hospital rooms are going to be when it opens in January. I am sure Michael and Greyson will be great without me.

Take care,
Brooke

Wednesday Morning

So, we didn't make it to a regular room last night after all :( We finally got back to see Greyson in recovery around 10:30 or 11:00pm and he was having some problems getting enough oxygen, he had a deep and raspy cough, and they were trying to get his pain evened out. He was VERY puffy from all of the fluids they had to give him and they also wanting to keep an eye on that.

Around 1am the Anesthesiologist made the call that he would have to go ahead and move to the PICU for the night so that he could get one on one care. We got him settled in and asleep by 2:30am and then got some sleep ourselves.

All of the doctors came in this morning and decided he is good to go to a regular floor room so now we are just waiting for a room to open. It is a busy place so we may be waiting a while. In the mean time he is drinking lots of juice and has eaten a little. He watched a little TV and has snuggled with us a bit.

Today I have taken advantage of The Blue Jackets Room (like the Ronald McDonald House Room in Children's Mercy in KC). This family hospitality room has a library/computer lab, sitting room with TV, kitchen, laundry, showers, treadmill, and complimentary chair massages. I headed down while Greyson was sleeping this morning and ran a bit, showered, and even signed up for a 15 minute massage (which was heaven). After all that sitting yesterday all three were great. Michael is going to get his massage tomorrow but I doubt he takes advantage of the treadmill ;)

As always thanks to all of you. And to Mrs. Irwin's class...I gave Greyson your message and he is on the mend.
Brooke

Finally Finished

13 hours later but all is well. The doctor said all of the nerves are working and she was able to get out almost all of the growth. It took a long time because the growth was intertwined with nerves, blood vessels, and muscles. He has two drains and a sling holding his arm down.

The incision follows his original surgery scar and goes up around his shoulder plus a small section by his neck. He is breathing on his own so will go to a regular room and will possibly stay until Friday then we will hang around to see Dr. Spaeth in clinic.

Glad to be done with this for sure. It's been a long day and we are anxious to see Greyson. Thanks for everything. We will share more in the morning.

Brooke & Michael

Another Update

Still in surgery... It's been 9 1/2 hours since we handed him
over. They have called a couple of times to let us know things are
still going well. Greyson did get a blood transfusion due to low
hemoglobin but they feel like he is doing good. The doctor was
still working on the chest wall and they expect to be done by 7pm.
FYI - it is 5:40pm now.

Brooke

Surgery Update

We have heard from the doctor a couple of times. Greyson is
doing well and all is going as planned. The doctor feels she might
get done earlier than originally estimated. We are patiently
waiting and keeping busy. It has been 6 hours since we handed him
over.

On a sad note my laptop has decided to quite working so I won't
be able to post any pictures :(

More updates to come.

Brooke & Michael

Surgery Has Started

We got here bright and early this morning. Greyson was sleepy but happy especially after they game him something to calm him down. He has started realizing that he may not like being messed with so the nurse that got to check his vitals found some bubbles and they did the trick. The drug kind of made him "drunk" which was pretty funny. At one point he was in the crib looking out at the nurses smiling and licking the bars.

The doctors came in to talk about everything and a nurse practitioner did a once over and said he was all good. She even checked Eli (the elephant) and my ears and he then seemed to be ok with her looking in his. He even showed her his tongue so she could take a look at his throat.

We handed him over at 8:10am and they called us right after 9am to let us know they had started surgery. It took them some time to get him set up for a long surgery (IV's etc) but they said that was normal and all was well.

Adrian is the waiting room hostess and she is that for sure. She knew even before we got here that we are going to be around all day. She made sure she knew where we were and that she had our cell number in case we leave.

We went down and ate breakfast a few minutes ago and are staying busy. We have good cell signals and are checking the CarePage and emails often. Thanks for the messages and so much more...

Brooke

Surgery in Morning

First, everything has gone great since they took out the drains Friday. The original "Buddy" site is quite swollen and red but he doesn't seem to care. We were finally able to give him a bath last night which he loved. The weekend with Adelaide, Jeremy, and Eleanna was wonderful. We went on a hayrack ride, ate, shopped, ran, and played at the park. We got back to Columbus this afternoon, checked into Ronald McDonald House, went geocaching, and had dinner out thanks to Chet & Charlie.

I am sure you all remember that surgery is tomorrow but thought we might give some additional details:
1. Surgery starts at 8am Eastern.
2. We should get updates from the doctor every 1-2 hours.
3. Surgery could last up to 10 hours.
4. Dr. Spaeth is going to be working in his shoulder/neck area, original chest site, and possibly in his arm depending on how things are connected.

We will put up a few posts tomorrow as we get information but will let you know for sure when all is done.

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

Drain Free

First...there are new pictures. Sorry for the delay but we are keeping very busy.

We started the day today with visit to the Columbus Zoo and Aquarium. This zoo is associated with Jack Hanna and he often tapes his wildlife shows there. We really enjoyed the visit and only wish we had more time there. The coolest thing (besides the animals and their habitats) was that Michael had found 50% off coupons and Greyson was free...and did I mention the beautiful weather (sunny, no wind and 70-80's).

After the zoo we headed back to Nationwide Children's (yes that is Nationwide the insurance company). Greyson got his 3 drain tubes out today with no problems. Two of the three were basically not draining at all and the other wasn't draining much by today. The worst part about the whole process of having drain tubes removed is having to hold Greyson still, which he hates, and peeling the tape off.

After the hospital, we stopped by The Ronald McDonald House (RMH) and got a tour. We have decided to get a room there on Monday night and probably as long as we are here after surgery. The RMH here is across the street from the hospital and is practically brand new. They ask for a $20 donation per night and ask families to help with small chores like starting the dishwasher or take out the trash. It is a beautiful facility and we will share more when we check in.

We hope you all have a wonderful weekend. We will start updating on Tuesday.
Brooke, Michael, & Greyson

Getting Out Soon

We are close to being discharged...actually just waiting on Greyson to wake up from his morning nap.
He/We slept through the night and woke up bright and early (6:30am). He ate a great breakfast and has been VERY active. He got his IV out and other monitors off so he is mobile again. We took a trip to the kids play room for a while and wore him out. He loved all of the toys there and activities going on.

The OT department helped to get the velcro on his wrist brace fixed and Dr. Shiels has been in touch to give some guidance on how to tend to his drains (especially the one that won't hold suction which is not that big of a deal may just be messy). The nurse has fixed us up with lots of supplies to change the dressings, we have a script for an antibiotic.... and we think we are good to go.

I hope to have some time to put some pictures up later today or tonight. We may even see about taking Greyson to the zoo/aquarium later today to keep him entertained.

Thanks for everything.
Brooke, Michael, & Greyson

Out of Sclero and All is Well

Again, I have to tell you all how much we love Dr. Shiels....he is so positive about how he can help Greyson and knowledgeable about Lymphatic Malformations (LM). He gave us his pager number and told us to make sure and keep track of it so that we can contact him in the future.

He came out a few minutes ago and told us all about what he did. He drained and treated 6 cysts that were sort of inter-connected so there are only 3 drain tubes. He also drained a few others to help Dr. Spaeth's surgery next week.

We talked a lot about the life cycle of LM and how to respond when they "flare up". He shared his positive outlook about what he can do to help get rid of what is there and how he can work with plastic surgery in the future.

He said that Greyson shouldn't be in any pain but that they want to keep him overnight to make sure he gets 3 doses of antibiotics before we leave. Greyson will be on antibiotics orally after that. We will come back Friday afternoon for the drains to be taken out.

Take care,
Brooke & Michael

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

Time for Sleep

Greyson just fell asleep after a fun night with food and a set of grandparents to entertain. This gave Michael and I some time to go pick up some clothes and have a good meal. The cafeteria wasn't cutting it today.

Greyson had the procedure this afternoon and the radiologist was very happy with the results. They put Greyson under and then, using ultrasound, found the large cyst under/behind his collarbone and drained it. They put in a drain tube and now we wait. They feel like due to the position of the cyst the likelyhood that it was compressing nerves is pretty good. It could take between 24-48 hours for his hand to start working again if that was the problem.

We will see all the doctors again in the morning and will hear what they think. If this works then the plan now is to sclerosis it on Monday but we know how best laid plans go :) and we will continue to be flexible.

Good night to you all.
Brooke & Michael
PS- pictures coming tonight.

The Plan

We have seen all the doctors today, including the close to 10 med students this morning, and we now have a short term plan. They all showed up when i was hanging out holding a napping Greyson in his bed/crib. Pretty funny - ;) pictures to come I promise.

Sooooooo.......Dr. Jiang and the radiologist have identified what the think is the problem. They believe based on the MRI results that there is new growth to Greyson's Lymphatic Malformation since the last MRI in October. They think that the new growth is putting pressure on nerves and that that might be the reason his arm/hand is not working like it should (it is limp and weak from the elbow down).

The good news is that it is largely macro-cystic, meaning it has many large cysts, which could possibly be treated with sclerosing (what he had done twice before his January surgery). Both of those treatments were successful in shrinking buddy so this could be good.

The unfortunate news is that the new growth is inside his chest wall intermingling with nerves and touching stuff like part of his lung. Dr Jiang says that that means this new growth area can't be operated on. It has also grown fairly quickly.

The plan today is to go in and put a drain in the new large cysts and drain them to see if his arm/hand control comes back. This could take between 24-48 hours since nerves don't just bounce back. If it works the will go back in the drains and do sclerosis to make it more "permanent". If it doesn't have any affect then there will be a plan B.

In the mean time dr. Jiang is trying to get a second opinion from the Vascular Anomalies group in Boston and we are trying to get a second opinion from a group in New York.

Thanks for all your support. We appreciate it all. I will send out another update after this afternoon's procedure. Take care.

Brooke & Michael

Calling it a Night

Greyson came out of the MRI around 10 pm with no problems. He was wide awake and happy of course.

We got back to the room and got him some cheese, apple sauce, crackers, and pudding. The nurses all thought I was crazy when I got into bed with him to help him relax but I think he likes it. One nurse even laughed as she said she had never seen a mom do that before.

After much coaxing he is finally resting (although I don't think he is actually asleep yet) and Michael is snoring. Dr Jiang and the other doctors are supposed to have some results for us in the morning. I better see about getting some sleep. More updates and hopefully some pictures in the morning.

Brooke

Waiting

So we finally made it to the room around 4:15. Everyone in the ER were so helpful but we basically were simply waiting on a room to open. Greyson finally napped a bit and even slept through the ride up to the room in the wagon (picture to follow).... It was tooooooo cute. Of course all the nurses love him and he gives the tons of smiles.

He is all settled with an IV, toys, and a Big Bird movie. Now we wait again for his MRI. They tell us it will be tonight (late) but who really knows. We are keeping our fingers crossed that this will give us some answers.

More later,
Brooke

Getting Admitted

The doctor called us this morning to let us know that there were no openings for outpatient MRI this week and he wants it done this week. Sooooo we are at Children's Mercy Emergency Room waiting to get admitted so they can do the test this evening.

Looks like another night in the hospital for the three of us. Greyson seems happy for all the new thing to look at and play with. Besides not being able to use his right arm he is as happy as ever. He is running around the gurney now holding Michael's finger and yelling.

We will stay in touch.
Brooke

The Unexpected

Not sure what else to call this....it seems that Greyson is having some sort of "flare up". His growth area seems to be swelling a bit and for some unknown reason he is not able to use his right hand. He seems to be a bit tender in his armpit area. He has some blood vessels in his shoulder area and on his back and under the incision area showing through his skin as well.

We took him to KC to see Dr. Jiang at 1pm today (after texting him at bedtime Monday night). He ordered an ultrasound today to rule out artery/vein issues and we are in the process of scheduling an MRI for later this week.

Hopefully we will figure this problem out soon. We will keep you all posted. On a happy note...he is walking. :)
Brooke and Michael

June 2011 Follow-Up Appointment

We met with the plastic surgeon and radiologist at Children's Mercy today for a follow-up appointment for Greyson. They are very pleased with his progress and how the compression garment is working. Our main goal for the appointment was to talk about when his next surgery would be and Dr. Jiang said he felt like December would be good. His plan is to keep working on contouring the part of "Buddy" they left and possibly see if the can fix the spot in Greyson's middle finger.

Dr. Rivard suggested we go ahead and take Greyson down for ultrasound so that we wouldn't need to come back for that in the near future. They were able to fit him in and found that there were no large cysts. This means Greyson won't need any additional sclerosis (which was what we were hoping for).
While we were there we stopped by the OT/PT clinic and picked up another Under Armour. This one is fitting much better than the green tie-dyed one. The fingers on the green one are way too long. They are going to get that fixed and hopefully get that to us soon.

Greyson is doing so great. He has mastered crawling and found a new independence and perspective. He now seems to know what he wants and gets frustrated quickly when he realizes he can't get it. He really wants to walk but it is still a bit off. He hasn't quite figured out balancing yet.

I believe I have found a blog option to change Greyson's stuff over to and will only be posting "medical" updates here after I get that set up. There should be a way that you can subscribe by email (much like CarePages) if you want. I will make a post to give you all the details soon.

Take care,
Brooke, Michael & Greyson

1st Birthday Celebrations

Last Saturday was Greyson's 1st Birthday. He had a GREAT day and enjoyed his first bit of cake and ice cream. We had a few people over to celebrate and our friend, Allison Rogers, took some awesome pictures so I thought I would share. She is so talented and it was nice to have someone else worry about getting all the perfect shots. Check out the Gallery for some party pics.

It has been such a whirlwind of a year and more fun than we ever dreamed. It hasn't been without challenges, but with the support of all of you things have been much better than we ever thought. Greyson has been through a lot but you would never know it. He is so happy and laid back. He keeps us busy and we enjoy every minute.

We hope this finds you well. We are thinking of those of you that the flooding has touched and hope that it recedes soon. Take care.

Brooke

New UnderArmour

Greyson is growing like crazy now and has already grown so much that it is time for a new set of compression suits. So many of you asked about how they make the suits fit so well so we thought we would share a couple of pictures of the measurement process (they measure his torso and hand along with both arms). Take a look in the Gallery for a couple of shots of Tracey, the OT at Children's that helps G out.

This visit we learned that the company in Ohio creates a pattern and a computer cuts it out. Then someone sews it together. The suit and glove are completely custom fit and I am amazed at the quality every time I tug and pull on it to get it on him and especially when he chews and bites at the glove. The first set has held up well but we are looking forward to the new suit to come in soon. This one has gotten so small that it is causing diaper leaking issues and rides up on his belly.

We will be celebrating G's Birthday on Saturday and so I will post some pictures of him soon after. We will also post an update after his next appointment with Dr. Jiang, the plastic surgeon on June 3. We hope to discuss next surgery plans for later in the year and then hopefully not have to return until then.

I am thinking of migrating his CarePages site to a blog where I have more control over the content and could add videos and more. I am looking for a blog site that will allow me to set it up to have email updates like CarePages so that those of you that want to know when I make updates will get an email. I will let you know if and when that happens.

Enjoy our spring....and stay in touch.

Brooke

A Special Thanks

It's been such a long time since our last post simply because Greyson is doing so great and we haven't really felt like there was much to say. He has more teeth coming in, he's scooting around, has gained a bit of weight, and is getting ready to turn the BIG 1 quite soon!

But yesterday we got some sad news about one of Greyson's supporters, Richard Campbell, and all I have been thinking about is how we need to take a moment to say thanks and to let his family know we are thinking about them, we send them our love, and we are sharing their sadness.

I don't claim that I knew him well, but I know that he was a loving husband, dad, grandfather, brother, son, uncle, friend, and more. I know that people say he was a very caring person. I know that as people have talked about him I haven't heard anyone say anything more than how much he will be missed.
And even though I didn't know him well I know that he cared for our son. I know he visited Greyson's page every time we posted an update and even sometimes more than that. I know that he waved at me every time he saw me out running and he got a kick out of telling me that Greyson was always beating me when I push him around town. I know that the first time we took Greyson to Michael's work, he took time out of his day to meet Greyson and make sure he was doing well. I didn't know him well, but what I did know I will miss.

I never know what to say in these sort of times, but I had to say something. Our hearts goes out to everyone that loved Richard and we will miss seeing his name show up every time we make new Greyson updates.

Brooke

Recovery Update

It has been 6 weeks since Greyson's surgery and he is doing great (although he was sick last week when I was out of town). His incision has healed up very well and most of the swelling has gone down. Dr. Jiang is extremely happy with the results and thinks that Dr. Rivard, the radiologist, may or may not have some larger cysts to scleros sometime after summer. Dr. Jiang and Dr. Rast will do another surgery in a year or so to work to get more of the tissue out and contour the front of his shoulder.

Greyson had an appointment today to pick up and check the fitting on his compression suit and glove (we are calling it his "Under Armour"). The Occupational Therapist was very happy with the fit and will make some minor adjustments and order another set on Monday if we are happy with it after a couple of days. The fit is very snug and a challenge to pull on (think putting on pantyhose right after getting out of the pool) but as long as he will tolerate it we will keep it on 24/7. He doesn't seem to be bothered by it but we have noticed that he is using his right hand a bit less as he is getting used to it.

See the Gallery for some new pictures from the last month.
Brooke

A Check on Some Minor Swelling

This morning we took Greyson over to St. John's to have an ultrasound on what I am calling "mini buddy" for lack of a better name. We noticed some swelling starting on Sunday morning and have been taking pictures of it since then. I sent Dr. Jiang an email at noon yesterday and he responded within 15 minutes. By 2pm he had talked with me on the phone, through email, and text. He called our pediatrician and the pharmacy and got Greyson lined up to have the ultrasound this morning at 7:30am and prescribed an antibiotic.
Greyson did a great job at the ultrasound and let the technician do her job with very little fussing. Think he thought her screen was a TV just for him again. On our way home from the appointment (9:00am) Michael and I were making bets on how quickly we would hear from someone - Michael bet 11am and I said 10:15am. Dr. Jiang had the results called us back by 9:15am. Wow, he is amazing - he is all about keeping lines of communication open. We are so lucky to have great doctors like him on Greyson's team.
So all is well. There are some cysts filling up with fluid (always a possibility) but nothing major now so no need to do anything. We will see Dr. Jiang when we take Greyson back to KC for his compression garment fitting most likely next week. Looking forward to seeing how they helps with the swelling in his chest but also in his hand and arm. Pictures to come.
Brooke

Another Friday, Another Appointment

Michael and I are starting to think we might need a timeshare in KC. Looks like we will be coming back in a week or two for another set of visits. Good thng is that we always have a yummy lunch and do some shopping.

Today Dr. Jiang took out the second tube. It wasn't working properly anymore so it was doing no good. We hope that the drainage subsides and all will be well. We talked with him about Greyson having sclero in May or after summer to possibly treat another large cyst or two. Besides that, all is well.

The second appointment was with PT/OT to measure him for a compression vest/sleeve and glove. It will be custom made and should be here in a week or two. If it fits he will get another and will wear them 24/7 (that's why we will get 2). We ordered one in blue tie-die and can get them in about any color we would like. They will have to replace it every couple of months since he will just keep growing.
Someday Greyson will get to pick the colors. Hopefully this will help with the swelling/drainage issues he has especially in his right arm.

All in all a good visit with docs again. Will update as things progress. Happy weekend.
Brooke

9 Month Check-Up

We took Greyson to see the pediatrician today for his 9 month check up. The appointment went great with only one surprise.....he didn't have to get any immunizations.... YIPEEE! The doctor was very pleased with Greyson's growth and development. His hemaglobin was a bit low but we already knew that since he had it checked last Friday. It is on the rise so we are not overly concerned about it now. So here are the stats:
Weight: 30th percentile - 19 lbs. 8 oz (with dressings and drains)
Height: 40th percentile - 28 inches
Head Circumference: 25th percentile - 44.5 cm
Besides this, things have been almost normal; you wouldn't think that he had surgery a little over a week and a half ago except for the dressing changes each morning (I am getting pretty good with the wrapping - even Dr. Jiang said it was very nice) and having to change out the drain tubes twice a day. The drainage was at it's highest on Friday and Saturday but seems to be slowing a bit now and isn't it near as red as it was. Very happy to see that.
We have another appointment with Dr. Jiang on Friday at 11am. I plan to update you all after that. Keep your fingers crossed that the drainage continues to get slower and slower each day. Once it's almost stopped he will take the drains out.
Hoping for no more snow ;-)
Brooke

1st Check Up - No Surprises

I say 1st because as we learn with each new meeting with the doctors, Greyson will be a patient with them for some time to come.

Dr. Jiang met us at the desk when we got there to check the drains and let us know we would be having blood work done. We then went to the room for the complete check-up. He was pleased with the incision and did say there was quite a bit of drainage but that it was not excessive. We talked about what to expect with the site in the coming weeks and we made plans to see him next Friday. The drains will stay in for a few weeks possibly and the swelling will continue to go down. The blood work was all good and the results of the tissue biopsy were good as well. Basically we will keep doing what we have been doing and hopefully the drainage will stop soon. It is really hard to keep a 9 month old from playing with the tubes and bulbs he thinks they are a new toy.

The best part of the day was returning the car bed. Greyson seemed to like the regular car seat but did let us know that he can melt down in the car seat as well. Better go, we are in the car and it has started snowing again. Better to have 4 eyes on the road than two.

Stay warm,
Brooke

Snowed In

Like most people in this area, we got about 20 inches of snow over the last 36 hours and are currently snowed in. Michael is out shoveling the driveway to to get the truck out as we speak - getting his workout for the week I think. Greyson has an appointment tomorrow in KC for follow up but if the roads aren't clear we will put it off until Friday or Monday. We talked to Dr. Jiang today about how Greyson is progressing and he is happy. We even emailed him some pictures of the drains so he could make sure they are doing well and he replied back very quickly. It is so nice having such great doctors!!! Greyson continues to only have pain meds at night and less than was originally prescribed. He is so happy and playful only crying when we make him sit or lay down instead of standing (which is what he always wants to do).

Stay safe!
Brooke

Nothing New to Report

Greyson had another great day today so nothing new to report...he is still in a great mood with lots of smiles and laughing, he is only needing pain meds at night and we are lowering the dose starting tonight, his drains are still putting out about the same amount (they won't take them out until all drainage stops), and his follow up appointment is set for 10:45am on Thursday (hope all the snow we are supposed to get is cleaned up quickly).
Stay warm and safe.
Brooke

Home and Doing GREAT!

We got home yesterday about 6:30pm. Greyson slept the entire way home and had a nice evening at the house playing with his toys and entertaining a set of Grandparents. We continued to give him his scheduled pain killers to keep him happy and put him down around 9pm. He slept great and only woke one time around 4am. He seemed a little uncomfortable so I gave him more pain medicine and fed him and then he slept until 8am. Was VERY nice to get some sleep in our own beds.
Since Greyson woke up happy we decided to wait on meds until he seemed like he needed it and so far we haven't had to give him any (and it's 3:20pm now). He is so amazing...he is sitting on his own and playing with toys, wanting to stand all the time, and is full of smiles and laughs. He has eaten well today (sitting in the highchair) and has taken his two normal naps.
Greyson was happy to let us change the dressings on his incision which took some time and 3 people to figure out. Wish the wrapping looked as nice as when Dr. Jiang did it (on his own). There is quite a lot of swelling in the front of his shoulder area where they brought a bunch of skin together when taking Buddy off and his right arm is still a bit swollen depending on how we have everything else wrapped. He has two drains in as well and they will stay in until there is nothing draining out of them. We clean those out once a day and measure the output to make sure it is decreasing. He is also taking an antibiotic to keep infection at bay and LOVES it. So nice that he doesn't fight us on any of that.
Michael and I will be here with him this week and will venture back to KC on Thursday (weather permitting) for a check up. We hope to learn what the next steps will be knowing that he will probably have drainage issues for life. We know they will do another surgery to continue working to get his chest a little more "normal" looking and we also need to figure out how they can address the cysts in his arm.
I am going to post more pictures (including one of the incision) in a few minutes. It looks pretty gruesome but know that Greyson doesn't seem to even be bothered by it. Remember, he has had no pain medication since 4am and is being very active. Wow....Kids are so resilient.
Thanks for all the wonderful comments. We will keep in touch throughout his recovery.
Brooke, Michael, and Greyson

Going Home Today

Yes, you read it correctly, we are going home in a little while. We have spent the day seeing that we can manage Greyson's pain, that he can be moved around comfortably, that he can sit up, and that he can eat. All of his vitals have been great since we got here so that isn't an issue at all. Pain medication and anibiotics have been ordered from the pharmacy and Michael is packing the car now.

Nurse Brandy is working on the paperwork and doing all the stuff she is responsible for. Dr. Jiang went through the short list of things to watch for and showed us how to change the dressings and how to take care of the drains. We will come back on Thursday for a check in to see that everything is progressing as planned.

We are excited to get on the road and hope that Greyson can relax and rest during the trip. We'll continue to make updates (although probably one one a day) as he recovers.

Thanks to you all for everything. Love you all,
Brooke, Michael, and Greyson

New Photos in the Gallery

I had a chance to upload a couple of photos to the gallery. We did get to see the incision this morning but took a picture with my other camera and don't have the cord to transfer those to my computer yet. I will share them later for those that are interested.

There is a chance we may go home today but we are waiting to see how it goes getting Greyson up, getting him food, and playing. Update to come after lunch.
Brooke

Saturday 5:30am

Sleep is good :)

After the last update we talked with the Pain Management doctors about getting Greyson onto oral pain medication to see how he would respond since he seemed to need less and less through the pump. They agreed it might be a good time to transition so we were able to get rid of the IV (although both IV ports are still in just in case).

He had a great evening with visitors getting lots of smiles. He was very active acting like he wanted to get up and go and playing with toys. He took a few naps and eventually fell slept after getting some pain medication. We all slept from 10pm until 4am when the nurses came in to do a vitals check. Unfortunately he woke up a bit distressed and in pain but after some more meds he was comfortable enough for me to try and feed him. With the help of the nurse we moved him to my lap and he hung out for a little while and ate and "talked" with us. The best part was when she moved him back and was changing his diaper and he peed all over her and the bed. He is now back in bed relaxing and hopefully falling back to sleep soon.

Dr. Jiang is coming in around 10am to talk about progress and when we might go home. Greyson is doing so well and the drain is putting off very little drainage that it might be earlier than Michael and I had originally thought. Still, he hasn't sat up or eaten any real food and I would like to see him do that before we even think about going home. The thought of getting home and then having to get back in the car and travel up here if there were problems is not idea. So planning on getting him sitting up and maybe get some real food into him in a bit but for now....back to sleep.

We will keep you all posted.
Brooke

Lazy Friday Afternoon

The day has been filled with visits from many doctors and the nurses all helping Greyson to be as comfortable as possible. We have had some family around and more coming late this afternoon giving us breaks as needed.

Greyson has had a fairly good day. His pain is well under control and he is taking milk and juice from a bottle. The pain medication is making him a bit itchy and so he is getting some Benadryl which then makes him very sleepy. He is spending most of the time sleeping with shorter active periods where he likes to try and pull on tubes and anything else he probably shouldn't be touching. He has a mobile above the bed that plays music and he has his elephant blanket (thanks Carmen) that he holds on to most of the time. We have even gotten one little smile through the pacifier.

Dr. Jiang has been in two times and thinks that Greyson is doing well but wants to leave him flat in the bed for now so no holding or breastfeeding until tomorrow. He is a bit swollen, especially his right arm, but both plastic surgeons assure us that this is expected and will hopefully go down in the coming days.
We may get to go home tomorrow but Michael and I are not hanging our hats on that. When we do go home, Greyson will still have his drain tubes in until there is no more drainage. Right now the drainage is not near what it was last night and Dr. Jiang is happy with it.

Looking forward to a calm evening. I will try to put another update up this evening but it may not happen until the morning if there is nothing new to report. Thanks to you all...
Brooke

Out of Surgery #2

Surgery #2 was successful - Dr. Rast repaired a leaking blood vessel and got Greyson in and out of surgery and back to his room within 3 hours. He has lost an ounce or so of blood and his blood count is low but Dr. Rast didn't want to give him a transfusion before giving his body a chance to correct that problem. They will draw blood in the morning so let's all keep our fingers crossed that they send the best lab person available.
All of the doctors and nurses comment on how strong and big he is (and of course how cute that hair is) and how that helps him to recover better. Even though we waited so long (in the short run) for this surgery the chance to grow and get strong has paid off.
Greyson is resting well now and will for hopefully a couple of hours. It's been a very long day and we are going to try and get some rest now as well.
Brooke

Back in Surgery

Unfortunately we are back in the surgery waiting room. Greyson was doing pretty well and got some needed rest this evening but his incision area started swelling and the drain showed that he was bleeding internally so the nurse called one of the plastic surgeons back in. At about 1:45am he decided that it would be best to go back in and take a look so they quickly got Greyson back down to the OR and we are patiently waiting to hear how it went.
Most of you probably won't read this until morning when you are also reading the next update about how he is out of recovery, but I thought some "late-nighter's" might appreciate this plus it gives me something to do.
Sleep well,
Brooke

Sleeping It Off

Greyson is in his room now (Henson Room 2606). He's sleeping well and is on pain medication to keep him comfortable. He was awake when we met up with him after recovery and seemed calm and sleepy. All of the nurses said that he was the sweetest little guy and they just loved his hair.

If anyone needs to get a hold of us they can call the room (816)234-1690. Our cell is getting a signal right now so I think I will be able to get calls and texts.

We are hoping for a quiet night and no pain for our little guy.
Brooke

Out of Surgery

Everything went as planned and Greyson is now in recovery. The doctors were able to remove 80% of the tissue and lots of the skin including most of the red discoloration. For those of you wondering he came into surgery weighing 20 pounds and now weighs 19 pounds :) He lost very little blood so didn't need to have a transfusion. We will see him in a bit less than an hour when they take him to a regular hospital room (ya no ICU).
Our concerns now are how well we can manage his pain. The doctors said that with this large of resection to expect pain but we know they deal with this here all the time and will know what to do for him.
Another surgery will be required at a later date and other procedures to take care of the spots in his arm. We hope to only have to stay here a couple of nights but it all depends on how things progress. So far it's looking pretty good.
I hope to put another update up later today but we will see how things go. Thanks for all the thoughts, prayers, and well wishes.
Brooke

In Surgery

Michael and I just left a happy Greyson with the surgery nurses with the plan that surgery will take around 3 hours followed by an hour in recovery. We will get hourly updates and when the doctors are done they will come down and let us know how things went. We will put up updates as we hear things.

Heading to the Hospital

In a few minutes we are going to the hospital. Everything went well last night except for a melt down in the car bed on the way and then they had to take blood from his head. They tried both arms but they couldn't find a vein in either. Traumatic at the time but he was fine when it was over. Glad they will give him gas before putting in his IV today.

Greyson (and Michael) slept great last night and he has been in a great mood this morning. Just waking up form a nap now to have some apple juice and then nothing more until after surgery.

More updates to come.
Brooke

Surgery Tomorrow

Tomorrow is the big day and to say we aren't getting a little anxious or nervous would probably be a lie but we know that we have a ton of friends and family to support Greyson through this and an EXCELLENT team working with us at the hospital.

We got the call from Surgery today letting us know that we need to check in at 11:45am and surgery is scheduled for 1:15pm and will last somewhere between 2 and 3 hours. My plan is to post an update after he goes into surgery and then one when the doctors come and tell us that everything went great ;) After that we hope to make updates a couple of times a day until we go home and continue to let you know how he is recovering after that.

Michael and I decided to head to KC this afternoon to keep it as low stress tomorrow as possible. Greyson is going to get his lab work done this evening and tomorrow we will go to the Plastics Clinic for a check-in with all the docs before surgery. We are hoping he will be able to sleep tonight and get his fill of milk before 7am. After that let's hope his great disposition gets him through until he gets put under.

We are looking forward to all the supportive comments we can count on all of you to make. Thanks so much.

Brooke, Michael, & Greyson