Wednesday, May 23, 2012

Seattle Trip

We went to Seattle a while back and it was a quick trip jammed packed with fun! When we first got to Seattle we went straight to the tourist attractions because we knew we wouldn't have another chance to go. We saw the "Spacing Niddle" as Reese liked to call it. 




The boys got a kick out of the gum wall!


Visiting all these places took me back to when I first went to Seattle with my college roommates. That was an awesome trip! Ryan and I had just started dating and I would spend hours talking to him on the phone when we weren't out having fun. That was when he told me that he thought we would get married some day. He even said that he was thinking like sometime in October. It was March and we had been dating for a month. :) But it all worked out and we ended up getting married in August! Eight years this August! 

Anyway... After we saw most of the fun stuff, we went to Ivar's. 

We were too late to go to the Pier but the boys (and Gwen) did get their picture taken on the famous pig. 

The next day was Grandma Dorene's surprise 80th birthday party. It was quite the shindig! There was a lot of singing and dancing and that's about all I can really put into words. It was awesome and I doubt there's another family out there that can compare. Here's the extended family but I think there's still quite a few missing.


The boy sang "I'm an Old Cow Hand." The video says it all!


The next day was Sunday and we got to go to Ryan's cousin's mission farewell and then the rest of the family headed home. We stayed an extra day so we could take Carson to the Craniofacial surgeon at Seattle Children's Hospital. We met with a bunch of different doctors and surgeons all that deal with Carson's deformity. They told us that they deal with this birth defect all the time and that we were really lucky that Carson's case was so mild. Usually kids don't even have an ear but Carson has a normal-looking, fully functioning ear. They said that his teeth were still lining up well and his bite was normal. Which is fine for now, at least it's not ruining his teeth, but that means he'll have to have surgery on both his lower and upper jaw later on after he's fully developed, around 18 years old. At this this point, since he can eat and communicate normally and it doesn't cause him pain, it's just cosmetic so there's nothing to do. I'm not really interested in giving my 5 year old a bone graft. So we were all set to just go home and come back in two years for another check up when another doctor came in and noticed that he kept pulling and leaning to one side. I thought it was just Carson playing the shy card but the doctor said that he wanted to do an xray of his neck just to make sure and that it was probably nothing, just muscle weakness which is another issue with HFMS. So we did the xray and headed home. A couple of days later the doctor called saying that they noticed "something" was wrong with his neck that they didn't anticipate and that we needed to get him in for an MRI. He said that it was an emergency but it's definitely something we needed to follow up with.

At this point, I'm not sure if it's related to his HFMS or if it's something completely different. Doing research on HFMS it says that there can be problems with his c-spine so I'm not sure why the doctor was surprised. I did find one website that said kids with HFMS have a 10-15% chance of having problems with their neck so maybe that why he was surprised. He's the one in a hundred. That even with all the cases he sees, neck problems are still really rare. So from what we can find on the internet, we think it might be Atlantoaxial Instability. But we have his MRI scheduled for next week so we'll find out more then. But man, this just really sucks. I hate not knowing. The doctor asked if he played sports and I told him he plays soccer twice a week and he said that as long as he wasn't in gymnastics or anything then he should be fine. I guess that since his vertebrae isn't formed right any wrong movement could make him a quadriplegic. So the last couple of weeks we've been living on pins and needles not knowing if we need to put Carson in a bubble or what. It's hard to think that's something's wrong though because he's just a normal kid. Hopefully we'll have more answers next week.

4 comments:

Kayleen said...

What darling pictures and the video is priceless! I'm glad you were able to get Carson in to see doctors who specialize in HFMS. It's hard not knowing what the next step will be, but that is where faith comes in. We'll keep the little man in our prayers.

Becca Bingham said...

Wow crazy to wonder so much! You always think things like this won't ever come your way. Hope all goes well. Keep us updated here on the blog!

Melissa said...

What a fun and informative and crazy trip Jen.
I'm glad you had a blast with you family and that video is a crack up.
I hope things work out.
Like Becca said, keep us up to date with the latest and greatest.
Love you guys.

Jessica Clawson said...

Cute pictures jen! And it goes without saying to please keep me updated with any news as to what's going on with Carson. Love you guys!