Hemispherectomy Reunion 2009

On July 7th Tyson and I were able to go to the Hemispherectomy Reunion in Baltimore, Maryland. I have been planning on going since last year after we went to the HME (hemimegalencephaly) Gathering in Kansas last year. I wish I could write down everything that went on during the 5 days we were there, but it would take pages and pages to do. It was amazing. So, I'll try to keep this short and only write what I have to :)

First off..my parents used their SkyMiles for me and Tyson to fly out there...which was a HUGE help. Thank you mom and dad! My mother-in-law, Susan, was also able to go with me, which was a lot of fun and a lot of help. Thanks Susan for coming with me. She worked it out where she was able to sit next to me and Tyson on the plane both ways and help me with him.

We left Tuesday morning to fly out to Baltimore. Luckily it was a straight shot there and we didn't have any layovers. That made it a lot easier, especially with Tyson.

One of the most touching and amazing experiences that week started when we got to the airport. Let me just say that I was an emotional mess before we even got there :) Before we got onto the plane I was walking Tyson around because I knew he would get restless sitting for 4 hours and I didn't want him scooting on his bum in the plane in between the isles. As we were getting ready to stand in line to board, a cute young mom came up to me and was asking me about Tyson, about his splint, how old he was and so I gave her the short story of how he has right-sided weakness. She pointed to her daughter in a stroller and said that her daughter Addy has left-sided weakness and that she might have to have a hemispherectomy. At that point I was so overcome with emotion that I just started crying. I still get emotional when I think about it. I only know of 3 other kids in Utah who have had a hemispherectomy and to actually run into a family who is dealing with the same things we were dealing with 2 years ago in the airport on the way to a Hemispherectomy Reunion...it was unbelievable. I know for a fact that this did not happen by coincidence. It's just amazing how things come about.

Anyway, they both grew up in Orem and live in Baltimore. I told them we were going to Balitmore for a Hemispherectomy Reunion and that they should come, especially if that is something they are considering for their little Addy. We talked some more after we got off the plane in Balitmore, got their phone number to give them a call to give them more info on the conference, which they did end up coming the whole time.

So on the plane ride there Tyson did great for about 30 minutes or so. I pulled out every hat in the bag and he wasn't having it. I had woken him up at 6:00 a.m. to get ready...thinking that the earlier I woke him up the more tired he would be and would just fall asleep. I walked him up and down the isle once because I couldn't get him to settle down, which was really a pain because they were trying to serve drinks. Let me just say my emotions got to me again and we were both a mess...but soon Tyson was fast asleep on me. Thank goodness.

Tyson's first plane ride

The next 2 days were spent with our HME families, some we met in Kansas last year and some we hadn't met last year. Wednesday we sat by the pool and hung out for awhile and then we went to the National Aquarium in Baltimore. It was a lot of fun. We took the hotel shuttle to the train, then the train dropped us off about 7 blocks away from Inner Harbor. It was a beautiful walk. It was so fun being in a different city and Inner Harbor was gorgeous. I wish we could have spent more time there. We had lunch at the Aquarium eatery and then walked around the aquarium. It was huge. Afterwards we had to stop by the Cheesecake Factory and grab a slice of cheesecake to take back...yummy! Here are a few pictures I took.

Chris (Noah's dad) offered to carry Tyson in a backpack instead of using the stoller. Let me just say that I LOVE the Jones' family :)

Nick, Kody, Tyson and Noah...I loved the bum scooting they all did!

Jen & Noah, Sunshine & Tyson, and me and Jayna...I love these ladies.

This is Lakshmi and Srikar from Texas. He just had his hemispherectomy about 2 months ago I think. We have been writing over email for the last little bit. THE nicest family.

This is Brendalyn and Addy, the cute family I met in the airport in SLC.

This is a REALLY bad picture, but on the far right is Dr. Carson, the legend in hemispherectomy surgeries. There was a special on TNT in April "Gifted Hands: The Ben Carson Story" played by Cuba Gooding Jr. It is a remarkable story. He showed up for 10 minutes to sit on the medical panel, which was a surprise to everyone...everyone pulled their camera's out. I wish I could have gotten a better picture.

Nick, Tyson and Mandy (who came from Australia with her daughter Keeley and family). Love them!

This is Caren. She is the most giving person I know. She doesn't not have a hemi child, but has dedicated her life this last year in doing everything for these children. Amazing.

Here is the group of Hemi children. I think there were over 60 families that showed up. Each one has their own unique and amazing story.

Tyson had to get a tattoo :)

Catherine, Kody, Tyson and Noah at the Friday night PJ party.

Here is a picture of the HME kiddos who were there, except for Srikar is missing.

And the HME mom's and kids....LOVE these ladies! There is no one else out there who knows what you are going through and is there for you 100%. My forever HME family.

This is Gabby...she LOVED hanging around Tyson. She said he was the cutest baby she had ever seen :)
She had a left hemi like Tyson and is the cutest girl ever!

This is Brian and Tyson. Another cute family we met from Tennessee.
This little boy is amazing.

Angie and Brian with me and Tyson.


The last day they had a lot of the hemi kids and adults/parents sing this beautiful song to everyone. I don't think there was a dry eye in the room. Here are the lyrics that I just can't help posting:

What would I do, if I knew that I could not fail?
If I believed, would the wind always fill up my sail?
How far would I go? What could I achieve,
trusting the hero in me?

If I were brave, I’d walk the razor’s edge,
where fools and dreamers dare to tread.
I'd never lose faith, even when losing my way.
What step would I take today, if I were brave?

What would I do today, if I were brave?
What would I do today, if I were brave?

What if we’re all meant to do what we secretly dream?
What would you ask, if you knew you could have anything?
Like the mighty oak sleeps, in the heart of a seed,
are there miracles in you and me?

If I were brave, I’d walk the razor’s edge,
where fools and dreamers dare to tread.
I'd never lose faith, even when losing my way.
What step would I take today, if I were brave?

What would I do today, if I were brave?
What would I do today, if I were brave?

If I refuse to listen to the voice of fear,
would the voice of courage whisper in my ear?

If I were brave, I’d walk the razor’s edge,
where fools and dreamers dare to tread.
I'd never lose faith, even when losing my way.
What step would I take today, if I were brave?

What would I do today, if I were brave?
What would I do today, if I were brave?