Tuesday, September 2, 2014

Start of School and Perhaps a little Denial

We have all been talking to Brayden about school.  Letting him know the day was coming...that he was going to be a big boy and behave at school.  Carter and Luke with him talked about it.  Jeremy and I talked with him about it.  His nurse and respite gal talked with him.  All of us hoping he would be happy (well maybe not happy, do not want to expect too much, so at least content) and ready to start school.

Last week, I got a message from Brayden's bus driver; she was with him last year and a couple of years ago.  She called to let me know Brayden was not on her route this year.  I thought, no big deal because they change them around every year but it was sweet of her to check.  She proceeded to tell me that her route was the same and Brayden was not on it so she wanted to make sure he was okay or if he switched schools.  She also called school transportation and found that he was not even on the list...they did not have him for bus transportation.

Brayden has been riding the bus for several years now, from our house to the same school.  Not sure how or why there was a mix up.  I called transportation and the school trying to sort it all out.  It seems as though many special ed kids were without a bus.  And most them, Brayden included, do not live near the school so the bus is important to get them to the school.

The assistant principal worked to find out info and get everyone set.  Brayden does not have bus transportation the first week of school, thus momma will be taking him and picking him up.  He should have a bus next week.  His days will be short because I need to pick him up early to get back to Waterford in time for Luke.

Brayden was ready this morning, we tried to tell him that he would ride with mommy to school and he would be starting school.  Having a bus ride would have really let him know but mom was the ride today.
Well we arrived and the little munchkin refused to open his eyes, perhaps trying to pretend he was not actually there...trying to deny the fact it was school time.  Once inside, he realized it was his time, the fussing started.  He was not thrilled with being there, summer time is his preference.  After lots of attention from the special ed ladies, he settled down.

Praying he does well and the transition going back is smooth (minus the transportation problem but we can handle that).  He will be tired and hopefully not too upset with me.

UPDATE:  Brayden did really well at school.  It did help that his day started in music class.  He even did the stander, without much protest.  It seems as though he put on his big boy pants today and decided to not fight it...although I am not sure he knows this is happening every day now...

Tuesday, August 26, 2014

Just Give him Music - at Ripley's

A quick day trip to Baltimore Inner Harbor to visit Ripley's Believe it or Not.

 Bripleys from Carrie Jenkins on Vimeo.

While the boys and their boys were looking at everything in sight, Brayden spent most of his time enjoying the kaleidoscope room - a room filled with lights, mirrors and loud music.  Then in another dance room that put your movement up on a screen.

Thursday, August 21, 2014

Brayden went a Bowlin' and He did like it, uh-huh

Why not try some bowling for Brayden?
The bowling alley in Leesburg is easier to accommodate Brayden.  They put up a little ramp to get up to bowling allies and gave Brayden a rack for him to push the ball.

Really not sure if he would be up for this.
And wouldn't you know it, he did great.  Watch his little hand give the ball a push, especially in the first clip.

Bbowling from Carrie Jenkins on Vimeo.

Brayden bowled an entire game, without complaint and trying to push it every time (and yes his brothers and some friends are bowling beside him).

See a lot of bowling in our future...

Wednesday, August 20, 2014

Running a 5K with Brayden

I signed Brayden and I up for a 5K, Sept 28 in the local town of Purcellville.

Let me be clear, I loathe running.  I will do just about any workout to avoid actual running.  I get board with running, my mind wanders, then I realize how slow I am going, pick up the pace again and then process starts all over.

However, Brayden loves to be pushed around in his chairs.  It is probably one of his favorite things to do (and he will let you know if he wants to be pushed more...usually in a not-so-nice way).  Jeremy found out about this inaugural race and talked with me about it...why not have a new goal?!

So I signed Brayden up to be a Captain.  He will be pushed by three Angels, myself and two friends.  We will have lots of friends and even two more captains, signing up to race with us.  And you can run with us too!  Send me a message if you are interested.

In the meantime I have been trying to work on my running skills.  Running with Brayden, running without Brayden, trying to increase speed, trying to increase distance.  There is a huge difference when trying to push Brayden.

Him - totally relaxed, enjoying the ride, perhaps catching a nap
Me - totally freaking out, trying to catch my breath and almost hoping for someone I know to come by and give us a ride home.
We are going to do the race and I am determined to do it well...oh and have fun.

Monday, August 11, 2014

Who doesn't want a little goat?!

A day trip to Great Country Farms.  Brayden enjoying the fresh air, kids all around.  The boys running around the farm with friends.

And Brayden makes his own friends.

Thursday, August 7, 2014

Panic...it is time for the Dentist

Dentist and a haircut.  Two the worst things to do with Brayden.  Maybe he is used to all the doctors, test and needles because those do upset him but nothing like the dentist and haircut...those he puts up a fight.

So you can imagine how "excited" I get to take him to the dentist.

Time for a little cleaning, the tech gave him a taste of the toothpaste.  She let him toss around that taste in his mouth for a moment, enjoying it, before going in. 

He did better than I expected (and my bar is very low).  He did hold his head still, didn't kick.  There was a lot of fussing, as the tech realized and said "I think he may be cursing me out".  The fussing turned in to gagging but amazingly the gagging didn't turn in to vomiting.  He settled down on his own after she finished, which is a big boy accomplishment for him to settle himself down quickly.  She actually cleaned his teeth and got a decent look at them.

Then the dentist came in for a look, Brayden was not having it but did hold still.

He teeth look good, no problems, one of the few benefits of not eating or drinking anything by mouth.  Evidence of some grinding, probably due to the fact that some of his old seizures involved teeth grinding.  And he has a couple of new teeth coming in.

Tuesday, August 5, 2014

The Sweetness of Friendship

A surprise visitor came out to the country, all the way from the city, just to drop off a birthday gift for me.  Not only is it a bit of a drive, then not knowing if we would be home and loading in the kids for the ride.

The Pfaff family has become so close to our hearts.  A friendship truly given by God, given for support, unconditional love and lots of laughter.
Such a sweet birthday surprise, so we attempted a picture of all the boys...not bad for boys and two that are blind.

Saturday, July 12, 2014

He does a Cabana and a Nap

Jeremy rented a cabana several times during the week, right by the ocean, right by the pool.  Plenty of shade for Brayden and a giant place to relax.  Of course the boys (including Jeremy) liked it because it came with a concierge to bring drinks and food.
Only question was, who was coming to be the one to move Brayden...cause he was not going to be happy to leave this spot.

The resort was wonderfully accessible, ramps and paths to get to everything.
It truly was one of best family trips we had, mostly due to the fact that Brayden did really well and had no problem finding sleep when he needed it.

Friday, July 11, 2014

He does the Beach

After much (too much) research on the perfect family vacation spot, we decided on Hilton Head.  We had to surrender the idea of renting a house on the beach any more...trying to find an accessible house, with accessible access to the beach, and not a house of 12 bedrooms (since we only need 2-3), proved to be a impossible task so we looked at resorts.

We found a Marriott resort in Hilton Head but is was 10 hours drive.  We haven't tried that long of trip with Brayden in several years.  In fact we did go to Hilton Head several years ago and Brayden was not a fan, we spent many hours rotating the person who would walk the property pushing Brayden, just to keep him from crying.

So we loaded the car and all of Brayden's gear.  The road trip went smooth (had to make a quick stop on 95 to pick up Carter and Luke from their trip to Myrtle Beach).  It was smooth until that last bit, as most beach goers know.  All of the beach traffic, with huge thunderstorms and flooding...so close but so far.  Then came the noise, an explosive noise.  No we did not blow a tire, Brayden blew his diaper; even the boys begged us to stop and take care of it.  We had to find a place to pull over and pray for a break in the storms.

All was clean and we finally made it.

It was one of our best family vacations, the place was very accessible and Brayden enjoyed every bit of it.

First time really taking him out in the ocean, and he did great!  But we had to ease him in with a start sitting on the boogie board.

 Oh how happy it makes us to see him so content and comfortable!

Saturday, June 28, 2014

Outdoor Adventure

Brayden's big brothers are away at camp.  It can't get too quiet around our house so we had to take Brayden on a little adventure.

Why not strap his car seat into the UTV for a ride around the farm and down to the Potomac.

We have not tried this in several years...last time did not go well for Brayden.  But this time he did great, so relaxed despite how bumpy it can be.

Then at home time to relax in the pool and oh does he know how to relax in the pool.