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