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 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 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.

Thursday, June 26, 2014

Official Ride for Jill's House

Pictures and the video posted all about the ride and I wanted to share.  It is really an amazing event.  Over 220 motorcycles on the road with police escort, a trailer and team to help the motorcyclists, and roads closed down for this ride.

You can see Stephanie at 1:57 and 2:19 in the video (big yellow Harley, with Team el Tortuga flag on the back)

We are so thankful to those who gave and Stephanie for setting up the Team el Tortuga Brayden!

Tuesday, June 24, 2014

Checking those Bad Bones

A long morning to check his bones.  Headed into DC for the Children's bone health clinic.

Traffic was miserable and there is still that awful detour to get to the hospital.

Before meeting the doctors and having tests, it was time for height and weight, just like any other time.  For quite awhile Brayden has been at 42 and 42.  42 pounds and 42 inches long.  I was expecting some growth but when the nurse said his weight, I asked her to repeat it.  He weighed in at 54 pounds...that is one chunk of love.  He also grew 3 inches.

After that, came the waiting for Brayden's turn with the dexascan to check his bone density.  Then off to take x-rays to get another look and make sure there were no new breaks or fractures.  It was finally his turn for the scans and x-rays, Brayden did a pretty good job cooperating with the awkward positions and being completely still (with the nurse and I holding him still...he is one strong little thing) for the dexascan.  Then to x-rays, and had to sit him up against the about a workout for all.

Back to the room and we wait for the doctors.  They finally arrived and came in to tell us the first round of dexascans and x-rays did not give them the best pictures so we had to go back for another try.  Thankfully the second round provided better pictures/view (cause there was no way Brayden was going to do those again in those awful awkward positions).  But he was wiped out and ready to be done with everyone.
Hours since we arrived, the team of doctors reviewed the results and Brayden's bone health is still extremely poor, still not-the-chart poor.  Thankfully there has been some improvement
since coming off the keto diet but more needs to be done.  And thankfully no new breaks.

In a few weeks, the team wants to admit Brayden for the day (should not need overnight) to start an infusion, Pamidronate.  After the initial infusion, he will go back every few months for another infusion...which is outpatient after the first infusion.  They do not know how long he will need the infusions, he still has many more years to grow and a long way to improve his bone health.  Each time he gets the infusion, the actual infusion takes 4 hours.

In addition to the infusion, it looks like they will be adding a couple of medications as well, but they haven't prescribed those yet.

We go back to the bone health clinic every 6 six months for repeat dexascans and x-rays.

After meeting with the doctors, we were still not done (while I am frantically trying to find people to pick up Carter and Luke at their camps because I did not think we would be at the hospital for the entire day).  The doctor handed us a lab sheet, we needed to go get if Brayden has not been tortured enough, lets add a blood draw.

The lab in the hospital was packed, standing room only.  Brayden was finally called and the tech got him in one stick (so thankful for the one stick).

On our way out, we ran into a sweet little girl from Brayden's school (adorable thing that I just want to squeeze).  And would you believe she is starting the exact same infusion process in a few weeks as well.  I know that mom and I will be talking...

But in the meantime, we just wanted to head home. 

Sunday, June 15, 2014

Needed Respite

After a long and hectic last week of school Brayden was ready to head to Jill's House.  I, on the other hand, did not plan this one quite so well.  Jeremy was out of town all week, Carter had 5th grade something many nights, I helped with the carnival and hosted all of the 3rd grade for a pool party...then had to load Brayden and all of his gear to head to Jill's House.  I was hot and sweaty and stressed.

Thankfully Jeremy made it home, literally jumped from his truck into my car to head to Jill's House with Brayden.  Carter at his pool party with friends and Luke hanging with his friends.

Headed in and I got Brayden ready for bed with all his meds and food.  Hugs and kisses goodbye and he was exhausted from the week and his eyes could barely stay open any longer.

The weekend went well except for a call concerning his seizures.  Apparently he had two small episodes of not breathing seizures.  Thankfully only lasting a matter of seconds, not turning blue but enough to alarm the staff and give us a call.  And thankfully no more episodes.
As always, Brayden loved the pool (asleep again), outside walks and music.

One of our favorite parts of his Jill's House stay, is picking him up.  We miss him so much but that is not all.  He "talks" all the way home, very enthusiastically telling us all about his weekend.  It is the best thing.