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.

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.

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.

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.

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.

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.

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 feeling...like 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...

Therapy for Haircuts

There needs to be therapy for haircuts...for the special needs kids...and for the parents.

Now, I have never enjoyed haircuts for my boys.  Some how with each haircut they grow up, they look older.  And I would like slow down that growing up process as much as possible.  Now lets toss in a haircut for a special needs child and that seems to be a recipe for high stress and sometimes disaster.

Haircuts for Brayden have been a journey.  When he was a wee little one, Jeremy and I would attempt to cut his hair at home.  Jeremy with the clippers and I was holding Brayden.  Brayden would scream, cry and wiggle.  Then Jeremy and I would scream and cry and try to wiggle our way out of giving him a haircut.  It was a tense situation.  We learned that it would be best to see a professional (not a professional therapist, but a professional barber).

It requires a great deal of patience to cut Brayden's hair.  I usually sit in the chair with Brayden in my lap.  The barber goes to work. Snipping when he is leaning one way, cutting when he leans another and trying the best to hold his head still for those clippers.  A sensory battle like no other.

Brayden screams like some one is torturing him.  As he has gotten older, he just sounds like a terrible temper tantrum.  Amazingly the barber (gals from Micky's Barber shop in Purcellville) have always been able to handle it and Brayden gets an actual haircut; scissors, clippers and all...looking good.  Meanwhile I have that "parent-sweat"...you know that sweat you get as parent when trying to look and remain as cool and calm as possible on the outside, all the while on the inside you are really anxious, stressed and pitting out.

This picture is Brayden after his haircut.  Still pretty steamed that we tortured him, thus the little scowl, with some residual tears from the trauma.  We like short haircuts...leaving lots of time for growing before we have to get a haircut.

He likes the Lake

Brayden has been my get-out-of-camping card for quite a while.  Camping and Brayden don't mix (medical things and all)...camping and Carrie don't mix (at least not the well for anything exceeding a night or so).  Part of camping has typically been days on the lake with boats, wave runners and lots of toys.

Jeremy has taken Carter and Luke camping and/or to Lake Anna for fun.  Brayden has not been in several years.  This year we made an attempt for the entire family to join Jeremy's parents, siblings and their families for a day on the lake.

After a long drive...long because Brayden cried the ENTIRE drive...we arrived at the lake.  Is there anything more draining than a child screaming and crying in the car?!  Thankfully that was not a sign for things to come.

Brayden relaxed on the boat for a while then we changed him to his swimsuit, greased him up to loads of sunscreen and then to the water.  The lake water was warm.

Brayden was not too sure about it at first.  It takes him a moment to adjust to new environments.

Then he settled in quite nicely.

And then settled in even more.

So settled he had a nap.  He was in the water for a couple of hours.

Cast is off

Brayden had a visit with his ortho doctor.

The cast came off (they put ear protection on him to minimize the sawing noise).  The femur is healing from the couple of small fractures.

Brayden had the cast on for our beach trips...apparently he has some tan lines.  No, he toes are not dirty, it is his tan line (from being under the canopy of his jogger and the beach umbrella, the boy still gets sun).

His is incredibly sensitive about his leg now that the cast is off...kind of a sensory issue, going from having a cast to not having a cast feels weird for him and he doesn't know how to handle it.  Hopefully he will adjust in the next few days.  And I have to admit, I am sensitive about his leg too.  In a way the cast with a comfort for me as well.  It protected that leg, the leg that always seems to give him trouble and discomfort.

The plan for his leg:  just watch it and he will continue to have Botox every few months.  And we will work on putting him back in his braces at home, hopefully working up to putting him in the stander.

Boy was she happy

Yes, I said she...in my house full of boys.

I am talking about the dog.  She was kenneled for our trip to Outer Banks and kenneled for most of my trip with the boys to Myrtle Beach since Jeremy was traveling for work.  I know the kennel spoils her with lots of treats, love and other dogs.  But this dog loves for everyone to be home with her.  I just did not realize how much.

We have trained her to not get on the furniture or to go into the bedrooms.  She can go into Brayden's bedroom since it is on the main floor but she really only goes in when following Jeremy or I.

We just arrived home from Myrtle Beach and the dog was beside herself with excitement that the boys were home.  As I was unpacking things in the kitchen, I turned to Gander and said with big enthusiam, "Let's go check on Brayden!", with a big gesture pointing to Brayden's room.

Well the dog took off towards his room and before I could speak, I see her taking a flying leap into Brayden's bed!!!

She has never, ever been in Brayden's bed.  I did not think it has ever even occurred to her.

Well, it scared me.  It looked like she was going to land right on top of him...and he was hooked up to a couple of things.  It only scared Brayden for a moment then he was pretty content with her being in his bed.

I did not yell at her since I did not want her to freak out and then scare Brayden so I gently coaxed her out of the bed.

Yikes.  She was a little too excited to have him home.

Just the hotel was an adventure

Brayden and I...a Myrtle Beach hotel room just to ourselves.  Jeremy traveling for work.  Carter and Luke with their cousins, papa and great-grandpa elsewhere in Myrtle Beach.

Sounds relaxing and for the most part it was...

Except one night Brayden and I were leaving to meet the family for dinner and a massive storm was coming through.  Power in the hotel was going on and off...no way was I getting on an elevator to be stuck.  So we waited it out.

Loading Brayden and his wheelchair in and out of the car was a task in all of this nasty weather.  Thankfully the valet guys at our hotel were a huge help.  They even comp'ed the valet parking, which meant I did not have to pay for them to park my car, not even once at the hotel and they pulled it around under the covering for us to load.

And there was more fun.

The hotel fire alarm went off a few times.  The first morning an announcement said the problem was identified and everything was fine.  The next morning the fire alarm went off pretty early, followed by the same announcement.  An hour later, the fire alarm went off with an announcement to evacuate the hotel. Umm...the elevators get shut down (obviously).  So to the stairs Brayden and I go, I did grab a few of Brayden's essentials in case this was the real deal.  I have to carry him, with his big cast, down a few flights of stairs.  Now I understand why they put accessible rooms on the bottom floors.  And wouldn't you know it, by the time we make it outside, everyone was allowed back in...at least I got a little work out.

For most of our vacations, we have rented a house on the beach.  We have not really stayed at a big beach hotel except in Myrtle Beach.  Pool chairs and a spot on the beach are HOT items.  People wake up at pre-dawn hours to "save" their spots.  Which made it impossible for Brayden and I to find a place to sit, since I could not get down there to save chairs.  One morning, I wandered and wandered...not a place to be found. So I "borrowed" a spot.  A large family group saved several tables and tons of lounge chairs at the pool...and most of them were at the beach never to even use their pool spots.  Another day I was unable to find a place to sit.  A woman told me about another pool across the property that usually had chairs.  The pool was a part of the timeshares not the hotel.  The valet guys and the concierge tried to find Brayden and I bracelets to use that pool.  In the meantime, the concierge set Brayden and I up with the posh chairs, the ones available for rent (except he did not charge us).

And let me tell you, Brayden could get used to this kind of pampering.  The lounge chairs, came with cold bottles of water and full service.

Those lounge chairs only last for a short time, another storm came rolling in.  Brayden and I quickly relocated to the hotel lobby, where the concierge gave Brayden and I some complementary t-shirts.  Made it back to our room and found a message that the valet guys got bracelets for us to use the timeshare pool.

Either I was looking incredibly pitful and like I needed some serious help or this hotel had incredibly kind and thoughtful staff.

On to another beach

The original plan was to head home from the Outer Banks.  Shortly after getting home, Carter and Luke were to be picked up by their papa for another beach trip with their cousins...all of them heading to Myrtle Beach to visit their great-grandpa.  Brayden and I would be home alone, Jeremy out of town for work and Brayden's nurse out of town as well.

Plans changed, Jeremy booked Brayden and I at a great hotel in Myrtle Beach.  So I loaded up all the boys and we headed from the Outer Banks of North Carolina for Myrtle Beach while Jeremy headed home for a business trip.  Not to bad of a road trip, the boys all did pretty well...although the drive was much more back roads in comparison to the 95 route that we would normally take to get to Myrtle Beach from North Carolina...back roads makes it hard to find those all important pit stops.  Once we arrived in MB, I dropped off Carter and Luke with my dad and their cousins (Carter and Luke did not want me around, this was supposed to be their big trip with out parents and be spoiled by their papa). Brayden and I headed towards our hotel.

Did I mention the insanely storms that were blowing through the area?!

I pulled up to the hotel.  This would really be the first time I have traveled alone with Brayden.  No one around to help (not even Carter and Luke to help).  Back to the storms...how was I going to unload all of Brayden's gear, Brayden's wheelchair, my stuff, oh and Brayden!?

Oh how I love valet.  If in Washington DC, I will choose valet over a parking garage any day and especially night.  This hotel had valet and not just the park your car kind of valet.  The kind that took care of all your bags and gave you a refreshing drink while they did so.

What a relief and huge help.

The hotel was great.  Brayden and I ended up sharing a king size bed.  Kind of nice waking up to this cutie.

The weather was horrible the first several days.  Lots and lots of terrible rain and storms...the kind that weather alerts were flashing on TV and coming across phones.  So Brayden and I stayed in the hotel for the most part and meet up with the others for dinner.