It’s been a while since we last posted anything! Life got really hectic for a while but things are settling down again. Andrea graduated from UIC on Mother’s Day with her BA in Political Science! This was a HUGE undertaking and and ever HUGE-ER (hee heee) accomplishment. Now that she doesn’t have to think about school for awhile, I can move ahead on my “terminal” (if it doesn’t kill me it’ll be my last one) degree and hopefully finish and graduate by 2011.
Jake has had a busy time too. On the day after Mother’s Day, he had surgery to remove a thyroglossal duct cyst that he had in the base of his tongue. We found out about the cyst rather accidentially when the surgeon from Cincinnati Children’s asked for a 3D CT scan of his head and neck. So, for the past year, we’ve figured that it’s just a little cyst that has a tendency to get infected and needs to come out before the trach does. Boy, were we wrong! The doc who removed it described its size to be about the size of a lens from a pair of glasses! There’s NO WAY that could not be interfering with things like swallowing. Now that he’s healed up (it’s really a beautiful scar!) we have to wait about a month for all the swelling to go down. We go see his regular ENT on June 22 where we’ll hopefully schedule the trach removal!
Jake got his new stander about a month ago and he LOVES it! Seriously, he stands in it with no complaints for at least an hour at a time, sometimes longer. This new stander has 4 wheels on it currently and we’ve ordered the “wheelchair” wheels that attach to it as well. Once the big wheels are on it, Jake will have more balance on the un-level sidewalks and he will hopefully figure out how to move himself…without wiggling like he currently does.
In July we’re going for the first time to the AMC Support Conference. We’ll finally get to meet all sorts of folks and families who live with arthrogryposis. We’re all really looking forward to the trip…I think Jake just wants to go to Sesame Place!
As soon as get new pics off the camera, I’ll post some new pics too!
5 Comments 
Hi Guys!
I can't believe how big Jake is getting. He is so cute. Can't wait for that trach to come..........
Love
Auntie JoAnn
I can't believe how big Jake is getting. He is so cute. Can't wait for that trach to come..........
Love
Auntie JoAnn
Monday, June 15, 2009 - 09:08 PM
Thanks for the update Betsy! Sounds like a stroke of good luck the way they found & removed that cyst, that is sure to be helpful with the swallowing business. You guys sure are the surgery experts by now, you should get a teaching gig at the medical school!
So glad to hear you will get the chance to go to the AMC support conference!! What a great opportunity to get to know folks who have some of the same experiences, share stories, find resources, etc! Very cool, have a blast.
See you some time soon! Josh & Julie
So glad to hear you will get the chance to go to the AMC support conference!! What a great opportunity to get to know folks who have some of the same experiences, share stories, find resources, etc! Very cool, have a blast.
See you some time soon! Josh & Julie
Tuesday, June 16, 2009 - 07:13 AM
Thanks for the update Betz! I lost the link and everything. I am so glad to see you're all trucking along. I can't wait to see you all again!
Tuesday, June 16, 2009 - 07:53 AM
So glad to hear my little boyfriend is doing GREAT!!!!! I can't wait to see him when you guys get out here!!! And Sesame Place is an awesome place for him to experience in PA.
Luv ya guys,
Jan
Luv ya guys,
Jan
Tuesday, June 16, 2009 - 11:48 AM
Nice going Rambo! Must be the Greek blood you inherited from me, that's speeding up your healing. Wait till I give you some Greek food! Then your moms will be upset with me because of all the gas you'll be getting!
Tuesday, June 16, 2009 - 05:57 PM
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