Getting to the beach

The Outer Banks of NC is not the most accessible beaches.  The Outer Banks is very protective of the dunes.  For the vast majority of house, hotels, etc. there are a lot of steps to climb up and down to reach the beaches.

This location was no different.  We were also very protective of Brayden's chair.  While it may look just like a jogger stroller, it is really a special needs jogger (technically in the wheelchair category)...which makes it a very "special" price.  It is several thousand dollars for this chair, of course insurance helps pay for it.

We tried to minimize the beach exposure to the chair, trying to not let it touch the water or the sand.  Jeremy and I would take turns carrying down his chair, putting it on a mat and then carrying down Brayden.  This carrying will not work much in the future since Brayden is constantly getting bigger.

A bit of a task but Brayden does love the beach.

At the beach

Probably one of Brayden's favorite places to be is on the beach.  The sound of the ocean, the breeze and having his family around.  He is so peaceful...so peaceful he falls right to sleep.

At the beach with a cast is a challenge but it did not bother him.

Need RCF...mild food panic

Brayden is on a ketogenic diet.  Several items are measured very precisely to create his food, a formula to go into his j-tube.  This diet put him into ketosis...kind of like medicine for seizure control.  Before he started this diet, he would experience 12+ major seizures a day.  On the diet, he had 1-3 seizures a day.  Dramatic difference.

Part of Brayden's formula mixture is something called RCF carbohydrate free soy formula.  This is like liquid gold in our house...and insurance seems to treat it that way to.  We cannot order it ahead of time because it is a prescription.  We depend upon Brayden's medical supply company to get us this formula, as well as his other feeding needs.

I ordered his food supplies, in plenty of time for our vacation.  It did not show up.  So I called...I called for 5 days straight.  All days that it was supposed to be delivered but never came.

Finally, I was told that it was "out for delivery".  It was on the truck and would be at our house any time that day.  It was Friday.  We are leaving for vacation Saturday.

Our UPS and FedEx guys tend to be at our house around the middle of the day.  By 1:00 and no feeding supplies.  I call every hour to make sure it was coming. Every time I was told, it was on the truck to our house.  At my 5:00 hour, I am starting to panic...still NO delivery.  I must have the RCF carbohydrate free soy formula.  We didn't even have enough for the weekend, let alone for our vacation.

By 6:00, the medical supply company discovered that part of Brayden's delivery was damaged and being returned to them.  All I really need immediately is the RCF and thankfully that was not damaged and still on the way.  By 7:00, it is discovered that all the packages were damaged and being sent back.

We have no food for Brayden.  I try to overnight some by ordering online...cannot work because it is medical supplies.  I try to call the medical supply company but it is now Friday night and I only get the on call service...they are not helpful.  I start calling the hospitals and Brayden's doctors to see if they can get some at the hospital.

Did I mention we are supposed to leave for vacation in the morning and I don't even have enough food for the weekend, let alone our vacation?!

One doctor suggested we admit Brayden to the hospital so he can get the food until the medical supply company can get the food to us...um, no way.

Finally, Brayden's nutritionist contacted the hospital and put some aside for Brayden.

The only problem, it is put aside at Children's in DC.  We are not heading that direction.  Carter had a soccer tournament an hour south of DC and we planned to leave for the beach from soccer.  Instead, I had to leave soccer, drive into DC (DC in the summer with all the tourist traffic is torture, it was a looooong drive to the hospital) and the drive south again.

We headed to DC, Luke (my 8 yr old), Brayden and I.  I did not park the car, left the car with lights flashing to run inside.  I could not get Brayden's wheelchair out because it was packed in the car with our gear for vacation.  So Luke and I had to carry him (cast and all) to run inside to get the food.

Cans were waiting for us, we grabbed them and headed for the beach.

After that mess I was ready for vacation.

Neon Green

Brayden has been much, much more comfortable with the splint on so we knew the fracture was really bothering him.  The splint provided him stability and comfort.  So we headed back to the ortho doctor...a 4:45 p.m. appt on the other side of the beltway.

The splint came off.  Brayden had more x rays, still showing the fractures.  So he was put in a cast, the choices of colors...and we picked neon green, something bright for summer.

The cast will be on for a couple of weeks.  Unfortunately he will have it for our beach trip.  At least he is much more comfortable.  Oh the fun.

Botox and a Bonus

We know Brayden's right leg has been bothering him.  He has been very sensitive about that leg.  He flinches in pain when we change his clothes or diaper, he cries in the car seat, etc.

He was scheduled for Botox to help his leg.  The ortho doctor came in to the pre-op room, she saw something more significant was going on so while he was under for the Botox they took a picture.

 The picture is showing a fracture in his femur.  That could be causing him pain.

Brayden had the Botox in both his legs and his right leg was put in a temporary splint.  The splint is to see if he is more comfortable and if that fracture is the cause of his discomfort.

So far, he is much, much more comfortable so we will be going to the othro's office to get a cast put on...right before our trip to the beach.

And the day did not end there.  After getting home to put Brayden straight to bed for the night, Brayden's nurse tried to leave but her brand new car would not start...a call to AAA and a tow (thankfully it was fixed the next day).

Jill's House

This week we had a couple of meetings for Brayden to start using Jill's House.

Photo from Jill's House

Jill's House is one-of-a-kind an overnight respite facility in McLean, VA.  We try to explain it to Carter and Luke by describing it like combination of a camp and hospital.  A camp that Brayden can go to for the weekend.

The staff at Jill's House is incredibly kind and thoughtful.  Lots of paperwork and lots of questions.  But they asked all the right questions.

It looks like Brayden may able to start in August and be able to use it throughout the year.  One entire weekend he stays (yikes).  But we know he will learn to love it...expecting an adjustment for him since he tends to have a hard time adjusting to new places.

We know he will love the music time and the indoor pool...and being spoiled rotten, he really likes attention.

Photo from Jill's House

Preschool Graduation

Brayden has moved up from preschool.  I cannot believe he has been in this classroom for 4 years!  He was sooo little when he started.  I have watched him mature more than ever expected.  This classroom has been so special.  The staff is so loving and have been with him since the beginning.

School has been hard work for Brayden.  Getting him ready in the morning (some years to catch the bus by 6:45 a.m.), the long days for him, lots of activity, trying new activities, therapies, loud noises, mommy adjusting...it has been work.  And he has improved over the years.  I joke that his first IEP (school goals and plan) just needed to say:  Ride the bus and Go to school.  Any goals after that were a bonus.  Now he has matured so much.  His head control and posture is much better.  He can use switches.  He can use the stander for a long time (and even falls asleep in it).  He communicates his needs.  His ability to look/gaze at things has improved.  And so much more.

Brayden was given the "traditional" cap and certificate.

As part of the graduation ceremony, the class put together a slide show of pictures.  Jeremy and I barely made it through, more emotional than both of us expected.  But thinking back on the last four years...so much has happened.

Brayden was not in the best of moods for his graduation, perhaps a little too much excitement.  I think he does not know what to do when his home world crosses over with his school world...and we were all in one room

For the graduation, Jeremy and I attended.  We pulled Carter and Luke out of school and Brayden's grandmother's were able to join us.

Then Brayden has a very special little friend.  This little guy was with Brayden in class and he loved to hold his hand...could not be more precious.

Brayden was exhausted when he finally arrived home and he slept for the night.