Home Again

Greyson's visit with Dr. Spaeth went well yesterday morning especially since he didn't tell her that he didn't like her. He told her that Thursday when she came to visit after surgery. He knew she was responsible for the splint.

By Ronald (or as G calls him "Donald")

She checked out the stitches and took out the drain tube. She re-wrapped it all and gave us instructions on how to care for it all. He won't have any OT or PT for now but just be encouraged to use both hands. We will follow up to check the healing with his pediatrician in a couple of weeks. He is going to talk with Dr. Shiels to decide when a follow up MRI will be and when we will take G back for follow-up treatment. He is good to go for now.

We hung out with Tralaine and Andy in German Village at Katzinger's Deli and the coolest bookstore ever. Before leaving them at their hotel heading to the airport for their flight home.

Candy Buckeye (chocolate and peanut butter is AWESOME)

Katzinger's Deli (it's famous...has even been on Food Network)

Cruising German Village carrying his leftover lunch.

Reading with Uncle Andy - they lost us when we went to get some sweets.

Fun with Aunt Tralaine. Lucky she was there to help clean up the two water spills at lunch.

 
We got home last night around 10pm and he did pretty good on the trip. We read books, played with some borrowed toys, and watched Babar and Monsters Inc. for the 50th time.

The week should be fairly quiet and he will probably go back to the sitter next week. He needs to be able to catch himself if he falls and things are looking promising considering he is wiggling his fingers today.

We will send an update maybe this weekend. He is doing so well there isn't much to report.

Take care,
Brooke, Michael, and Greyson

Whirlwind Weekend

I can't believe it is already 10pm on Sunday night. Since we left the hospital on Friday time has flown by. Greyson has done excellent. He has had some minor pain but the Ibuprofen seems to take care of it. By Friday evening he was dealing with the splint much better and tearing around here like he owned the place. He found the train table in the play room and was hard to tear away from it.

Tralaine and Andy got in Friday night and we met up with the Saturday. We visited the Runners Expo, ate, had Jeni's Ice Cream of course, and hung out at RMH. I was supposed to take a taxi to their hotel this morning but it never showed. Luckily there were some very nice volunteers here to make breakfast and they offered to give me a ride (only 5 minutes). Michael and Greyson got to meet him at breakfast and he even made them a special plate of eggs and french toast.

The race was great. So well put together and supported. There were 18,000 runners with both the 1/2 and full marathons being sold out. I have never seen so many bathrooms and water stops...the important stuff for runners. Since we raised so much money (thanks to so many of you, we hit our goal of $1500 on Saturday and went over - yipeeee!)we had access to a special VIP tent at the beginning and end with some special food and more port-potties.

Running 26.2 miles is a challenge but we got it done. My legs wouldn't say it was a fun day but spending the day running with Tralaine and Andy is always worth it. I owe my finish time once again to Tralaine. She seems to have turned into my personal pacer and pulled me through many miles making sure I got a PR (personal record). Thanks Sis! And of course it was great to see Michael and Greyson at the end having fun at the after party. Of course G didn't want to leave.

Greyson goes to see Dr. Spaeth in the morning. We expect she will send us on our way after the visit. She said he may or may not come home with the drain but I am betting not...it really isn't putting out much. She will also take the splint off tomorrow and we will get a good look at the incisions. He has one at his elbow, one at his wrist, and one on each of 3 fingers.

I will send an update once we get on the road to let everyone know the plan. What a trip it has been...Michael and I will be glad when we are finally home.

Have a great evening. Pictures to come hopefully tomorrow.
Brooke, Michael, and Greyson

Friday Morning Update (10/19)

Greyson had a pretty good night's sleep. He fell asleep around 7pm and woke for about 30 minutes at 11:30pm, then was awake again from 4am-6am, and finally woke up about 8am. He hasn't complained about much pain. He really doesn't like the splint that Dr. Spaeth made special for him. We told her it might be an issue so she wrapped the splint in blue tape with cars on it. He still isn't much of a fan. We found that if we covered it up along with the IV and other monitor with a blanket he didn't worry much about it as much. He even started covering them up.

Playing Peek-a-boo!

He has been unhooked from all monitors now and seems to be dealing with the splint better since he is now mobile. He just finished up breakfast and is playing here in the room. We are getting ready to head down to the new play room and let him have some fun before we check out.

The plan is to go to RMH by noon today and just hang out for a couple of days. Tralaine and Andy will get here tonight and we will meet up with them tomorrow. The Runners Expo is tomorrow and then the marathon on Sunday. I will make another post sometime after the run Sunday.

If anyone is interested in donating to our team for the marathon I think you still can. We are $225 away from our $1500 goal. Click and drag over this address then copy and paste it into your web browser if you are interested in giving: http://www.nationwidechildrens.org.kintera.org/faf/r.asp?t=4&i=1011247&u=1011247-364784818&e=5979548072  Tralaine, Andy and I raised more than anyone else on the Plastics Department Team and we owe that all to those of you that donated :) Many Thanks!

Take care and thanks for everything,
Brooke, Michael, and Greyson

Surgery Done & In Recovery

We got here bright and early and surgery started about 7:50am. Greyson was given some medicine to relax him and he was quite silly when we left him with the nurses. The surgery went as planned and just finished at 2ish. It took a bit longer then planned due to his growth tissue being wrapped around veins and major nerves but that is what Dr. Spaeth specializes in so he was in good hands. She shared a lot about what she did and even showed us some pictures and is very pleased with the outcome.

We are waiting now to get to go back and see him and then head to his room here at the new hospital for the evening. Dr. Spaeth doesn't think there should be any major problems and he should be able to go back to RMH tomorrow.

Take care and we will share more later.
Brooke

On The Road to Columbus, OH

We left for Columbus this morning a bit later than planned but the only appointment to keep today is dinner with Matt (cousin in Louisville). He is hosting us this evening and is making a yummy pot roast with potatoes and carrots and Mac-n-Cheese cause he knows G is a big fan. We are so lucky to have such great family to lean on...an friends of course. 

 

We will arrive at Ronald McDonald House tomorrow afternoon with a big bag of shampoos, soaps, etc to share with them. Between all of Michael's travel with work and from my awesome eMINTS family travels we have a lot of toiletries to give. We are lucky to have a "schedule" with G's stuff but so many family's find themselves there unexpectedly with nothing and these items may take away one minor worry while they are there.

Greyson's schedule is as follows:

10/17/12 (Wed.) Sclero with Dr. Shiels - arrive at 6am for 8am-9:30am sclero. He will treat chest and shoulder area. We will take him back with us and then a late afternoon appointment to check in with Dr. Spaeth.

10/18/12 (Thurs.) Surgery with Dr. Spaeth - arrive at 5:45am for 7:30am surgery. Should be 5 or less hours. She will work on his elbow, wrist, and hand. He will stay overnight in the hospital and hopefully get released early Friday to go back to RMH.

10/20/12 (Sat.) Get ready for Marathon with Tralaine and Andy. Go to Runner's Expo and chill.

10/21/12 (Sun.) Marathon and recover!

10/22/12 (Mon.) Follow-up Appt. with Dr. Spaeth and hopefully head home.

We will post updates as time provides (at least one a day) and will hopefully get to put up a picture or two. Thanks for all of your support and love.

Brooke, Michael, and Greyson

Friday Appointments and More

Entertained in the waiting room (yes he lined up the "dogs")

So sorry it took me so long to get this posted today. It was a longer day than expected at the hospital and then I thought we were headed to the room for a nap and Greyson decided he didn't need one ;)

Waiting for his turn with the iPad (iGuy) and Daddy.

Sclero went well. Dr. Shields treated a lot of small cysts in his chest, behind his collar bone, and upper are. There is really only one larger cyst left in his elbow that will be taken care of in October when Dr. Spaeth works on his elbow, wrist, and hand. Greyson was a bit upset when he woke up and really wanted something to drink but he got through that fairly quickly.

We saw Dr. Spaeth later this afternoon to talk about progress and future plans. We should have dates for October sclero and surgery soon. Everyone is very pleased with Greyson's progress and how great his scar looks. He was a great patient and had fun picking out 2 stickers.

Chloe and Greyson - Sorry he is blurry...this boy never sits still.

We made friends with a family I had friended on Facebook (there daughter's LM is VERY similar to Greyson's and she is just a year older). We had a nice time visiting with them while the kids played here at RMH and we sat by them at dinner.

one of many wooden animals in the new hospital

Such an amazing place.

After dinner we toured the new hospital lobby which is awesome. Then we headed to get some ice cream and walked around a park in German Village.

Jeni's is the BEST!

We are heading out tomorrow afternoon and should be home tomorrow night. Thanks for all the well wishes.

Brooke, Michael, and Greyson

(I forgot to post this on Friday here - originally posted on Carepages 8/10/11)

Sclero Tomorrow

We are finally here after some delays, diversions, and circling all thanks to Mother Nature. We plan to head from the Columbus airport to RMD house and settle in.

Greyson's sclero is at 10:30am tomorrow and should only take an hour. He has an appointment with Dr. Spaeth at 1pm. We will update everyone then. Hope getting off this plane goes quickly. ;)

Brooke

(I forgot to post this on Thursday here - originally posted on Carepages 8/9/11)

August 10th is Around the Corner

The date is set, the room is reserved (Ronald McDonald House), and the flights have been booked (thanks Papa Charlie). We will be heading back to Columbus, OH in just about a month for Greyson's next round of Sclero. We are expecting a very short procedure (1 hour) with no drains (yipeeee) and no need to stay the night in the hospital. Dr. Spaeth and Dr. Shiels have a plan for Sclero now and then in mid to late October followed by a much shorter surgery a week later. I love a good plan and this one seems to be making the most sense right now.

Greyson has been doing GREAT and we are excited that no issues have popped up with his Lymphatic Malformation since last October. His chest/shoulder look AMAZING and no where close to what it looked like when he was born. Many people have asked why we are doing more procedures since he looks so good so I thought I would explain it here if more of you are wondering the same thing.

First off, the tissue in his chest (and there is still more even though we can't see it) that is malformed is very unpredictable and no two LM act alike. It can sit and do nothing or grow at any time "unprovoked" and there is a good chance it will get bigger if he gets sick (like an upper respiratory infection) which wouldn't be good because the tissue in there could get infected. The LM doesn't cause him to have a weakened immune system but if he were to get sick it can cause his LM to get angry and react. :)

The doctors we are working with believe that the more of the tissue you treat, and/or get out, the less of the possibility of it filling up or growing...especially if it is connected. So our goal is to treat/get out what we can in hopes that it deters future flare ups or growth. Dr. Spaeth thinks that these two round of Sclero and surgery this fall may contain it enough so that Greyson won't have to continue having MRI's, sclero, etc. possibly until he hits puberty. Some LM are affected by hormonal changes. And getting it done this early means he probably won't remember it :)

I have said it before and I will say it again...Greyson is doing great and is having no problems with his LM and we are very grateful for that. We have learned a lot throughout this journey and continue to learn more each day. We hope that being proactive now will make the future a more enjoyable time when we can spend our future vacation time on actual vacations and not traveling to hospitals :)
Thanks again to everyone for all of the support and love. I wish you all could spend some time with Greyson these days. He is such a sweet, loving, energetic, happy, funny little guy and he keeps us hopping minute to minute.

Brooke (Michael and Greyson)

Doctor Report on 4/6/12 MRI

We heard from Dr. Spaeth (who has consulted with Dr. Shiels) both in Columbus, OH. They were very pleased to find that the growth in Greyson's chest cavity has shrunk since Dr. Spaeth did surgery. We are excited to hear this news and hope that is stays that way. They confirmed that there is a small amount of regrowth in his shoulder (behind his clavicle) and the larger cyst in his elbow area has gotten a bit larger. Dr. Spaeth said that is expected since his lymphatic system "above" it has been removed since it was part of the growth. She also noted that there is some micro-cyst regrowth in his lower chest area by the incision.

They feel like treating the larger cysts with sclero in the next couple of months will discourage it from regrowing. She also feels like a follow up surgery, possibly in the fall, to remove the tissue in his elbow and wrist could take care of things for a while. What we have learned is that lymphatic malformations have a mind of their own and doing everything that we can to discourage regrowth is a good idea but will never have a guarantee. We don't want regrowth to cause issues like it did last August so staying on top of things is important.

For now we are figuring out when a trip to Columbus this summer will make the most sense and when Dr. Shiels can treat him. We will keep you posted when decisions have been made.

Have a great week,
Brooke

Post MRI/Ultrasound

***originally posted on CarePages

Today went well. We got to the hospital at 6am and Greyson was in a great mood. He had the waiting room and the sedation area all to himself including all the nurses, and by the time we left the room for his MRI, they were wrapped.

The MRI was scheduled to take 2 hours and only took a little over an hour and the Ultrasound lasted just over an hour so he was done a bit quicker than we expected. While we were waiting both Dr. Jiang (plastics) and Dr. Rivard (interventional radiologist) stopped in to talk about how great Greyson's chest looked. They each took a quick look at the MRI and agree that there is a some of the cysts growing back in his shoulder area (behind his clavicle) and the area around his elbow has gotten a bit bigger.

We hope to get a full report from Children's Mercy next week. Before leaving the hospital we requested the images be sent to Dr. Spaeth in Columbus and we hope that it gets to them by the middle to end of next week. After they review them they will weigh in as well and we will decide what (if anything) should be done.

Greyson woke up pretty quickly and we headed to the Keck's house so Greyson could play with Leo and Rachel and I could catch up. We went to lunch but Greyson started getting fussy and acted very tired. Within an hour he was burning up and his breathing was a bit labored. We called Dr. Jiang and he suggested we go back to the hospital and get him checked out. The doctor in the ER decided that it was a reaction in his lungs to the anesthesia and that ibuprofen should help with his fever and feeling bad. Within 30 minutes he was happy and eating a Popsicle and ice and saying hi and bye to the doctors and nurses going in and out of his room.

The day was a bit longer than planned and we are tired but all is well and he is sleeping like a log right now. Thanks for all and take care,

Brooke

MRI Tomorrow

Originally posted on CarePages 4/4/12

Finally April 6 is almost here. We will head to KC tonight for an early morning at the hospital for Greyson's MRI and Ultrasound. He has to be there at 6am and we hope he's done by 10 or 11am. He will be sedated since he can't sit still for that long :) (or even for a minute). We probably won't get any results that day but hope to hear back from the doctors soon after. We are sending the imaging to the doctors in Columbus.

It's been 6 months since surgery in Columbus and this will let us know what is happening inside and if anything is regrowing. We know that is the nature of this condition and if it is growing back then we will work with the doctors to figure out the next steps. He is still doing great and can use his right arm completely so even if it is growing it isn't causing any issues and that is a good thing.

 I will make an update when he is done on Friday and then when we get some results.

Thanks to all,
Brooke

Welcome to This Boy's Adventures

For our CarePages followers, we are excited that you have decided to check out Greyson's new blog. As I mentioned in the last CarePages update, I have been looking for another option that is more flexible and allows  bit more creativity and control and a Blogger blog seems to be the answer for now.

There are a few changes I thought I might point out... The most important one to me was that Blogger allows visitors to subscribe by email. This is different because instead of just being told their is a new Update (what a new story is called in CarePages) in an email it will actually email you the new Post (what a new story is called in Blogger). All you have to do is find the "Follow By Email" text field in the top right corner and enter your email address.


Other cool things you may want to look for are the Blog Archive, Picasa Photostream, and a search feature (top left corner). I will tag all health related posts with an LM so if that is what you are interested in reading then all you would have to search for would be the initials LM and that should bring up all posts related to Greyson's Lymphatic Malformation.

All 96 Carepages posts have been transferred to here but due to constraints on the CarePages site we can not transfer comments. All updates, comments, and Gallery items will stay on the Carepages site and I will not be deleting any of the content.

The goal for this blog is to add more posts and pictures about ALL things Greyson and not just the health related happenings. If you are interested in keeping up with us then we invite you to come back as often as you like. If not we understand and thank you for all your support up to now.

The Higgins

Happy New Year 2012

Greetings to all of our friends and family that follow Greyson's Carepages site. We hope that you had a wonderful holiday filled with relaxation and good times and wish you a happy 2012.

Things are still going great here with Greyson. He is doing quite well and was even dismissed from Occupational Therapy right before Christmas. The OT said that if she didn't know what to look for she wouldn't know that anything was any different with him than any other kid.

Greyson is growing like a weed and doing so much these days. He has lots of words in his vocabulary (his favorite today is Bubba, my dad's horses name) and he has also started repeating lots of words that we say. I figured that out one day when I said "crap". Guess we have to watch that now. He is on the run most of the time and likes to spin, "dance", and do somersaults (with help from us). One of his favorite things to do now is to hide. He got some tents for Christmas that we have set up in his room and he runs and hides in them and then calls to "Mommy" or "Daddy" to come find him.

He is scheduled for an MRI and Ultrasound on Feb. 8. They are checking to see if anything has come back. We will send the images to his doctors at Nationwide Hospital. We are hopeful, but if needed we will head back to Columbus and take care of things. He will still have another surgery to take care of the spots of lymphatic tissue in his hand and arm, but that won't be until maybe late next year.

Thank you again for all the support. We will send an update after we get the results of the tests in February. Take care.

Brooke, Michael, and Greyson

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