Wednesday, June 20, 2012

Brayden on vacation

This trip was a quick one.  Drive to Outer Banks Monday and drive home on Thursday.  We were invited to stay with our friends during their vacation.  I loaded up the car with Luke (my middle boy) and Brayden.

Brayden has been at a really good place, medically.  No major issues, no emergencies, etc.  I felt pretty comfortable going away (without the help of Jeremy or the nurse) for this quick trip.  For any previous trip that we have taken, I make lists.  Lists of everything Brayden needs.  I meticulously pack everything and check things off the lists one by one.  A few times in the past, I have emailed a couple of Brayden's doctors to let them know we will be heading out of town, in case they get a call of random hospital.  I usually find the location of the nearest hospital...just in case.

This trip, I packed quickly...not from lists, just from memory.  I also made no plan for any emergencies.

Brayden did like the ocean.  Very relaxed on the beach.
Loved the king sized bed and lots of kids climbing in bed with him (he loves attention).  Loved laying bed, with the door open listening to the sounds of the ocean.
One night, he was upset and I could not calm him.  I tried to snuggle him but he was thrashing around.  I thought he did not want to snuggle and he was trying (in his own way) to push me away.  He continued to be awake through the night.  Luke and I left him in bed and headed for the living room couches to get some sleep.

I checked on him in the early morning and realized that he was having a seizure and was probably having one since the middle of the night.  I gave him all of his morning medications, hoping that they would take effect and help control this seizure.  The seizure continued.  I needed more medication, that I did not have and did not pack.  I called one of Brayden's doctors.  She called in a prescription to a pharmacy.  I left Brayden at the house (watched by a few adults who care for another special needs child).  I drove 40 minutes to a pharmacy that did not have the medication.  I spent more minutes calling pharmacies to find one that did have the medication.  Then I followed the GPS to the wrong location (I wanted CVS and it kept taking me to Rite Aids).  I finally got the medication and drove back the 40 minutes to the house.  I was not taking him to the little Outer Bank hospital.

When I arrived back to the beach house, it seemed as though the seizure was stopping.  I still gave him the medication.

We had planed to drive home that afternoon (and my friend ride with us).  Brayden SCREAMED for the first couple hours of the trip.  Then he went into another long seizure.  We had to stop and give him yet another medication.  I was bordering on giving him too much medication but I did not want to go to a hospital that was not one of his normal ones (Inova Loudoun, Fairfax or Childrens).  The medication did work and he passed out asleep/snowed by medication.

I gave myself a headache and some new/deeper wrinkles from the stress.  We finally arrived home.  I HATE seizures.  Really, really hate them.  I hate what they do to his body.  I hate that he looks trapped and sometimes it seems like he is screaming for help.  I hate that I cannot do enough to help him.

We did have a nice time at the beach.  Just not a nice ending.

Tuesday, June 19, 2012

Tooth Fairy?

We have been on a little vacation with friends (but more about that adventure later).

The big news from the trip is that Brayden lost his first tooth.
I saw all of his teeth that morning.  Later that afternoon, I saw a missing tooth.  I have no idea where the tooth landed...perhaps in his belly (that later became part of a diaper, I am sure).  We will just tell the boys the tooth fairy got it.

The funny thing is, he was fascinated with the hole.  He would push his tongue over and over it.  Then he managed to get his finger right there to check it out (shocking that he could pull this off).

Thursday, June 7, 2012

Last day of School

Brayden loaded the bus for his last day of school.
Later in the morning, his class had a party for a boy graduating out of the preschool program.
I promise everyone is much happier than they look in this picture.  They really are adorable kids.
How about those cheeks and double chin?!

Tuesday, June 5, 2012

Field Day

Brayden was able to participate in his school's field day!  He had a t-shirt made (by someone at school) for field day.  He went around the playground, walked the therapy dog and even got a hat.

When he got home, he was wiped out!