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

Easter Trail-ride (another 1st)

We were invited to spend Easter Sunday with my dad and his friends at their home for dinner and some horseback riding. 

As many of you know Greyson is OBSESSED with Dad's horses and especially Bubba. 

After spending the weekend with Dad and Beck and all the horses he now knows each horses name and most of the time identifies them each by name correctly. 

Sometimes he does get Bubba and Buddy mixed up but so do I since they are brothers and look very similar. The funniest is that he has renamed Grandpa Roberts' horse Sam who is now known as "Bebe" (baby).

Greyson rode Bubba (his favorite) with my Dad, Michael, and Me in the arena and we took him on his first official trail-ride and he LOVED it.

 Not one complaint except that he wanted to see all the horses behind us.

 After the trail ride he wanted to get on every horse and even did some tricks.

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