Friday, August 30, 2013

Back to School Open House

We may not talked too much about school this summer.  So this may have seemed like a surprise attack to Brayden.  We loaded him into the car and headed to his school.  An open house and to see his new room.
He did pretty well but did not want to be bothered.  I have a feeling the first couple of months this school year will be a big adjustment...

Monday, August 26, 2013

Not a fan of Cat in the Hat and Clara Barton?

Taking Brayden out to any new place is always a little gamble, things can pay off or we can loose (sometimes our sanity).

The boys and I headed to Glen Echo Park in MD for the Cat and the Hat production at Adventure Theater.  Brayden has been handling things much better in his mature age.  I was hoping that he would handle the show.  I did not take into account the crowd.  Before the show, they got the theater fired up...meaning shouting "Are you ready for the show?!"  Replied back from the theater, "YES!"  Well that shouting totally freaked Brayden out and there was no recovery.

I tried to calm him down.  I quickly scooped him out of his wheelchair...a little to quickly.  In my hast, his tube got caught in his wheelchair and out popped his mic-key button.  Now things were leaking on him and all over my pants.  I scramble to find the syringe and the button to put everything back in place (amazingly, this causes him no pain...would kind of think a hole big enough to stick a finger in, right in the middle of his stomach would be some discomfort, but no).  A quick clean up and I am back to trying to bring the calm.
Well he didn't calm down.  I already discussed an exit strategy with Carter and Luke in case I needed to leave with Brayden.  Thankfully the theater is small, so I could just go out in the lobby and they could stay in and watch the show.
 Brayden calmed down and we watched the show on the lobby TV.

After the show we wandered through Glen Echo Park, Brayden could not be any happier being outside and with his brothers.   Then we headed to the Clara Barton house.
Brayden was not too impressed with the house, he just wanted to be back outside.

Thursday, August 22, 2013

Ripley's for fun?

We headed to the Baltimore Inner Harbor for a visit with my brother, his wife and new puppy (Brayden was not impressed with the new puppy...and I was secretly hoping he would love it and the puppy would curl up in his lap for a cuddle...that did not happen.  although Luke did not want to leave the puppy).

We headed down to Ripley's Believe it or Not museum.  Surprisingly, it was a great thing for Brayden.  The place was filled with music, Brayden loves music.  There were lights and buttons for him to push.  A great sensory experience...although I did not push him too much because we don't poke the bear, if you get what I am saying.
He loved the kaleidoscope room, lots of music, lights and mirrors.
 Another great room with music and lights.
And fun with the mirrors.

Ripley's was great for the kids and it was very accessible with lots of things for Brayden to try.  And he handled it all (although he only let me try a few buttons for him to push, it made airplane, car, etc. noises).  The lights and the music made him very happy, which makes me happy.

For more pictures you can check out our family blog.

Monday, August 19, 2013

Back in the day

We headed to the Civil War Medical Museum (for Carter's ever growing love of history...he bonus that we live in an area so rich with history).
The boys found braces from back-in-the-day and wanted to compare some of Brayden's.  Not a huge difference.
As we walked around reading about the gruesome truths to medical treatment during the civil war, I kept having to remind myself how far medicine has come.  A child like Brayden would not a lived long during that time. The discoveries of medication, treatments and even just patient care has made huge progress and still there is so much unknown and ways to improve.

Saturday, August 17, 2013

A jeep guy

When I meet Jeremy, he was a jeep guy.  He loved that jeep and it was quite fun (just ask his college friends...on second thought, don't ask...they had too much fun).  We kept that jeep after we got married but with working, starting a family and never driving it, we sold it.  The jeep life is back (well actually it has been back for awhile, I just haven't blogged about it).

The weather in NoVA has been absolutely perfect, like we have to spend every moment outside kind of perfect.  What could be better for a jeep!?
Brayden had not been in the jeep with the top down.  We know he likes the windows down in the car but the top down on the jeep could be sensory overload for him.  We were willing to try and we only had a few miles drive to a local fair.

At first we were all quiet and waiting for his reaction...he loved it, so relaxed.  So after the fair we went for a long country drive.  Brayden was relaxed, closing his eyes, letting the wind blow his hair.
He is a jeep guy, just like his daddy.

Friday, August 16, 2013

To the park

Another day outside to enjoy the weather.
To Baker Park for a kids day, some music, crafts and animals.
Brayden touched a snake, a very wiggly one and he was NOT pleased so we tried a turtle shell.  He was much more happy without any sort of animal.

Thursday, August 15, 2013

An outdoor guy

Brayden is an outdoor guy...really only if the weather is perfect.  And the weather has been amazing here in VA.  For a guy that cannot control his body temperature well, the low 80 degree weather could not have been better.

Off to a local farm with his brothers and new experience for Brayden.

A tractor ride, which could have easily been a disaster with the loud tractor, loud kids, bumpy ride...
But no, this big boy liked the ride.
 Then blackberry picking.
Off for some more fun.

Even down a slide with mommy.
And a little swing time with his nurse.

Wednesday, August 14, 2013

Behavior for a Wedding

Taking Brayden to any new environment always seems like a risk...taking him somewhere he needs to be quiet is even more so.

Back in the day we spent many hours and times in Washington DC at events with my father (times when the President was present or times that included media).  Carter and Luke were little but we found that lollipops were the best solution...they would suck on them, keep them occupied and quiet without the rustling of snacks bags, plus they were thrilled to have a treat.  Not that we wanted or needed them to have more sugar but it was like a big kids version of a pacifier.

But now, what to do with Brayden?  He can go from being content to really upset in just a matter of moments and sometimes we have no clue what may set him off and lollipops are not an option.  Most times we have some sort of exit strategy.

Brayden and I were invited to his nurse's wedding.  Oh boy, Brayden at the wedding, we haven't tried this in awhile.

Would you believe he was on his best behavior?!  Smiling and happy, even content to have many complete strangers talk to and touch him.  He was not bothered by the music or the noise of the people.  He was kicking his feet with joy during the music and even made some of his happy noises when he heard his nurse saying her vows.
A little visit with his preschool teacher and aid at the wedding (he may have been worried he was at school).
He knows how to behave, don't let him fool you.

Tuesday, August 13, 2013

Back online

After a battle with my computer and internet connection...I now have a new computer and new internet connection.  And am ready to blog more about the summer.

The big news (not really so don't get too excited), Jeremy and I had a night away...kinda sorta.

Carter and Luke went to their first sleep away camp in TN.  Jeremy and I drove them to the camp (meeting up with some friends and cousins that went too).  Brayden was not going to handle the 6 hour drive there and turn around to drive another 6 hours home so Brayden stayed at home.  His nurse stayed late that night, my parents spent the night and then the nurse came early in the morning so Brayden was well taken care of while we were on the road.

After dropping the boys off at camp, Jeremy and I started the drive home and stopped for dinner and the hotel. 

Do you hear that?  What nothing?  A silent car?  No sign on children?  This could not be my car.
It was strange to not have any child with me.  I have not left Brayden overnight in about 4 years (even then Jeremy was home with him).  And Jeremy and I have not left Brayden overnight in about 5 years (and even then we put him to bed and made it back first thing in the morning).

A very strange we were forgetting something.  And I am not used to traveling without Brayden...we had sooo much room in the car without all of his gear. 

Maybe this could lead to actual time away for Jeremy and I...