Bryson's Blog

Living with Trisomy 13

Tuesday, August 26, 2008

The unconquerable Mr. BEAN




Well every one, this is a new and exciting update from BEAN's ever-lovin momma. We are still in the heat of summer down in the hell pit of Texas. The A/C has been broken in the car for a few months now, so we've been mostly grounded to the confines of our chilly house for the entire season. Not that I'm complaining, the traffic here is more bumper cars than bumper to bumper. I still have a ways to go on car payments but the wear on the car says its more upside down than what its worth. I know some of you are devote readers who check in here to know the buzz on us than to give a call. I haven't always got a moment to sit and illustrate the life and times of the Naults, because Mr. BEAN, my boss, hasn't the patience to understand that I need time for myself. I have the time right now because he is enjoying his morning nap. I love it when you call me, I can juggle a phone, a child, and a few chores at the same time, but sitting isn't a luxury I have for long.




But in other developing stories I have to report, Bryson calls me by my name now. He knows his momma can come quicker when she is properly addressed, and in the right tone!! He is practicing his Dad words but for a kid who's had so many oral issues that's a tough one to say. We get the idea of when he's saying dadda by the hint of playful growl he babbles when he wants dad to scoop him up and throw him around. My momma word comes with a hint of whine and longing for a cuddle buddy. He is also sitting well on his own and can do a somersault all by himself. We think it's too hard right now for his mind to coordinate crawling, but with all his strength, will, and stubbornness, it's just a matter of time and for it to be his idea. We've been working with his therapists for a whole year to get him to crawl, but Bryson's in charge of what he will and will not do. He's a lot like his Dad in that regard, when he's good and ready he has the skills to do what he wants, but it can be frustrating waiting for that time to come.




For those of you that remember that glorious night at the pier, Our 3rd wedding anniversary is coming up next Wednesday on the 3rd. It would have been nice to make something special of the day, but it feels like 30 years instead of 3rd. We (Travis and I) are likely going to stay in and comfort Bean because on the 2nd he will have some major dental work done.




Bryson has an early AM appointment to be sedated for dental cleaning X-rays and fillings for a lot of cavities and even possibly a tooth extraction. Unfortunately, his teeth are really bad and the problems are exacerbated by lack of pediatric dentists at the military hospital, being directed every which way to dentists who refer us to other DDS's, and well we've spoiled the sugar baby rotten. The fact that his has a slight refluxing issue may also be a factor as well as maybe his teeth aren't as strong as they could be if he didn't make crazy weird cells with the Trisomy 13 code in every single particle.




It's so hard to judge what's normal stuff and what Trisomy 13 has got to do with what happens with our little guy. I cant bring myself to look at him as a kid with a syndrome, he just feels so normal to me. I wouldn't have a clue what being with a "normal" child might be like, because I don't have any experience with "normal". I never really have...... Bryson is just the way he should be and maybe even better than that, he has exceeded every expectation Travis and I were able to imagine for him, with the trisomy diagnosis. We couldn't have guessed any part of our lives would have taken us where we are today or where we'll be even tomorrow. He's got his moments of genius, where Travis and I are both stunned at how capable he is, given his abilities and setbacks. Some days we swear he's made a bunch of suckers of us when he shows he's outsmarted and manipulated us again for giving into his master plan for familial domination. It's hard to say no to a kid that makes you so sure you ought to say yes we can and will make this family life great. As adorable and cute as he is right now, it's too hard to resist his charms!!!

7 Comments:

Blogger sherry said...

hello this is sherry--(Bryson's respite worker from copenhagen NY) just popping in to say hi and see how things are going. he sure looks like quite the little man in his photos. Hope all is going well. email is sherrylynn362@yahoo.com

7:59 PM  
Blogger Dori said...

Sherry,

So glad to hear from you and also happy to see you still keep up with my grandson! We are so thankful to you and all the folks back in Copenhagen that helped us along in our journey with Bryson. He is doing well and is quite the animated little character! You would be amazed how much he's changed from the little baby he was back in NY! So much personality. He loves to eat! He loves the sunshine. He loves breezy cool days (rare in Texas) Again, thanks for checking in!

9:31 AM  
Blogger connie said...

I saw updates about Bryson ages ago on the Living With Trisomy 13 site. I'm so glad to see he is doing so well!

10:03 PM  
Blogger Amanda said...

Update some pics please... love you baby bean. Auntie, uncle, and cousins

7:41 PM  
Blogger Amanda said...

new pics please of my beanie weanie!

12:21 AM  
Blogger Tamy said...

Hello everyone! I am from Lewis County NY and came in contact with Bryson. I like to here updates so when I saw there has been no updates since August I was disappointed. I remember when the Dr.'s thought Bryson was not going to live past 6 month and you prooved them wrong. Hope everything is going well. Happy Holidays from the cold and blustery North Country of upstate NY!!!! Tammy

9:20 AM  
Blogger sherry said...

Hello this is Sherry from N.Y. just checking in to see how everyone is. Hope everything is going ok for everyone, I havent seen any updates, but I hope that is due to everyone being busy from the holidays.Hope everyone is doing ok.

7:53 PM  

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