Mr. Personality

Brayden made it through a week of school.  His first time going Mon-Fri.  He first time going to school 10:30 a.m. - 2:30 p.m.  First time bus pick ups are at 10:00 a.m. and drop off after 3:00 p.m.

It is a long day for him.  It was a long week for him.

Mon - First day, he did really well
Tues - He made a two day streak of doing really well
Wed - He realized that the school things was not a fluke and he was really going all the time.  He was not a happy camper this day.
Thurs - He surrendered to the idea of school and did pretty well.  But still protested in his own way.
Giving such a look (during his PT time).  Such a look that they snapped a picture and sent it to me.

What a stinker!

Fri - A great day...actually fantastic from beginning to end.  He seems so grown up this week.

I think Mon-Fri will work for him.

First Day of School 2012

You would think Brayden may sleep in since he did not have to catch the bus until 10:00 a.m., unlike his previous years of being ready before 7:00 a.m.  He was up this morning, awake with all of the action/noise of Carter and Luke.  Maybe he was excited for his first day of school?

We let him relax all morning until it was time to get ready for school.  Loaded him in his wheelchair about 9:45 a.m. and the bus came shortly after.  All the while, I was anticipating his not-so-favorable reaction to all things school but he was very content all morning.  Although he would not open his eyes for pictures.

Once he was on the bus, he seemed to know where he was...and he was not upset.

In fact, he did great all day.  Report from school said he had a fantastic day.  He arrived home on the bus around 3:00 p.m. still in a good mood.

It was a great start to the school year (unlike last year).

Oh how I missed him today.  He will be at school Mon-Fri, I cannot believe it!

School Open House

It is almost time for school.  Brayden had his open house.

Same school, same room, same teacher.  He is continuing preschool special ed.

The big difference this year...he will be going 10:30 a.m. - 2:30 p.m, considered to be afternoon.  Last year (and years past) he was in the morning 7:30 a.m. - 11:30 a.m.
This year the bus comes at 10:00 a.m.
Last year the came at 7:00 a.m. (earlier in the years before).

The open house.  Brayden was not thrilled to be back in the building.  Moments after arriving, he started fussing and would only fuss more if anyone from the school talked to him.  He was not pleased he was back at school.  But he will adjust and hopefully enjoy it more this year.

The other change this year...he will be going Mon-Fri.  That's right, he will be going everyday.  In the past he started Mon, Tues, Thurs.  Then progressed to Mon-Thurs.  This year, everyday.

Could Brayden be a Spy?

We headed into DC for the International Spy Museum.

Brayden was thrilled, not really, he slept through most of the museum.  Even got a picture with him (had to take him out of his wheelchair with his nurse) and did not wake him up.

Then we headed to Sprinkles cupcake in Georgetown.  Brayden was fussing, perhaps from his bumpy ride on the brick and/or cobble stone walks.

But I cheered him up with a little taste of frosting (smacking his lips from tasting it).

School Shoes

Brayden is ready to head back to school (although we have not convinced him of that yet).

We had to find shoes that would actually fit him.  And this is a task.  We have traumatized a few ladies at Stride Rite and Nordstrom over the years, who try so hard get his very round, very fat feet into a shoe...not to mention making it fit with his AFO braces on.

The Shoe Train in Potomac, Maryland seems to be the only place in the DC Metro area that can custom fit shoes.  So we loaded the car to head over the river for Shoe Train.

Shoe Train is one hot spot.  The place was full of people and kids running all around.  I neglected to realize that it was back-to-school shopping time and this week happened to be tax-free week in Maryland...needless to say the shoe store was busy.  A two-hour wait busy.

The owner approached us with Brayden asking if we wanted to come back over the weekend before the store opened so it would be better for Brayden.  Very thoughtful but impossible for us.  It was this day or no day, so we waited it out.  Did I mention I had Carter and Luke with me as well?

We ate lunch, some pizza and subs.  Played in a toy store (taking kids into a toy store is torture, they want everything and I do not plan to buy anything; but we did buy a couple of small games they could play while they waited).

Finally, shoe time.  Brayden needed a pair with his AFOs on and a pair without his AFOs on.

His feet measured about a size 8.  The shoes for the AFOs are a size 11, double extra-wide, insole taken out and they cut parts of the shoe to make it fit.  

Brayden was pretty patient trying on the shoes.  We did get two pairs as well as a pair for Carter and Luke. Getting shoes for Brayden has proven to not be a simple (or cheap) task.

Benefits that come with Brayden

Like Handicap parking, small thing for having Brayden in the car.

But sometimes there are greater benefits, without even knowing what is happening.
Take this past weekend for example.  We headed to Baltimore to visit my brother and sister-in-law for an Orioles game.

My brother arranged for the tickets in the main section.  Good seats and a great place to park Brayden.  It did end up being a bit hot but Brayden was covered (too many times that he was looking pasty) with sunscreen, had his fan and an umbrella. As the afternoon went on, our seats were in the shade.

Brayden enjoyed being outside and having all of the family around him.  Although he screamed on the way to Baltimore, feel asleep, and cried for too long when we unloaded him from the car but he finally settled down.  I did worry that he may not be cut out for a baseball game, which could have made a disastrous family outing.

We had planned to stay after game because it was a night the children could run the bases.  I inquired about wheeling Brayden around the bases.  Close to the end of the game we headed to the location for children waiting to run the bases.  The line was long and seemed to wrap around the outside of the stadium.  We were told to find an Orioles attendant that could help us with Brayden.  After going through a sea of people, we were told to head to a little room with a desk.  This desk was for the family and friends of the baseball players.  Everyone was getting passes to head down to the locker room area/family waiting area.

An attendant was there waiting for us and told us to the follow.  We loaded an elevator, down we went and into the halls of the baseball stadium.  Parts of the stadium that looked too official for us to be there.  We passed the press room, locker room and family waiting room.  Apparently we passed some players too (I had no idea who they were because they were not in their uniform).  The Orioles attendant opened the door and we were right behind home plate.  We waited there briefly and then they called us onto the field.  Carter and Luke (cousins too) were the first to run the bases.  Brayden wheels were not allowed in the finely manicured field so he watched from the side.

We finished running the bases and watched some players come out to the field with their friends and family and then we were ushered off the field (I did try to get pictures but there was not enough time).

Oh the life of Brayden.

My true life

Do any of you groupon, livingsocial, etc?
I do.  And I have realized that I probably should avoid those email deals all together.  Discounts for exotic vacations, fabulous restaurants, events, spas, etc.

All things that are a part of my pretend life.  The life I pretend I could have in my head.  A life filled with dining at sophisticated restaurants before Jeremy and I headed off to an island far away...with my perfectly pedicured toes and botox filled face (I do not really want botox, needles to my face terrifies me).

I need to stop torturing myself with reading those deals and imagining...

My true life is not about cruises but being the cruise director for my children's lives; coordinating all of their activities and needs.  My life will not change drastically where I will jet off at a moments notice or be able to spend countless hours getting a massage and facial.  My life is about my family.

I thought I did realistically imagine my family differently.  I did think we would be more adventurous or that we would have more time to just do or go some place different (just even to a different restaurant).  I did not think we would be continually stuck in a rut...a parenting rut where our world revolves around the boys, living little time for much else.

This week has been about the start to football season, prepping for the start of school (the boys just got their class assignments and are thrilled).  I have been watching Brayden's seizures increase.  Talk to the doctors.  Have appointments, blood work, trading in equipment, making calls, etc.

Brayden's life can be all consuming.  His seizures have increased way too much this summer.  Leaving the DC metro area, is not something that we are comfortable with...earlier the summer I drove from the outer banks of North Carolina with Brayden seizing because I did not want him to be in the OBX hospital.  Brayden also does like to be out of the house much, changing his routine has proven to be harder the older he gets.

Jeremy and I have had some long hard talks the past couple weeks.  While our world revolves around our boys, it cannot be an excuse.  Brayden's needs cannot be an excuse.  We both fully acknowledge that but not sure how to make it work...yet.  We have to make it happen within our circumstances, not wait for some fabulous groupon deal to come.

Home

Brayden made it for 24 hours without pain medications, his pancreas numbers were down and we were able to take him home.

When he entered the hospital, his lipase levels were 3000.  A normal level could be around 7-160 (depending on which doctor says is normal).  Brayden's pancreas has been a question for over 4 years.  His lipase (and amylase) is checked most times he has any blood work.  His levels have been as high as 1300-1500 but never reaching 3000 like this time.

The questions: What is going on with Brayden's pancreas?  Is it causing him pain?  Does it cause problems for him?

While we know that his lipase levels have been high several times in the past, we do not know if it really causes him problems.  We do know that he has insufficient pancreatic enzymes and we add enzymes capsules to his food.  In 2009, Brayden had an ultrasound of his pancreas and a MRCP (like an MRI).  Things looked good then.

The doctors do not know much more than that.

We do know that during this hospital stay, Brayden entered with numbers of 3000, well over the normal range and he was screaming in pain.  Screaming and screaming like Jeremy and I have not often heard from him and it was terrible. Only finding respite when he seemed to exhaust himself and sleep for 10-20 minutes then waking right into a scream.

And me trying to comfort him in any way possible.

The next day Brayden was much more comfortable and his lipase had already decreased to 600.

Yesterday afternoon, he was feeling much better so we wandered the halls of the peds wing, the playroom and the courtyard.  He was happy to be outside and playing with the fancy lights.

We arrived home this morning.  Actually discharged early this morning...in time to hit the morning DC rush hour but taking him home made the bit of traffic very bearable.

We will check blood work again next week.  If Brayden has another episode like this (high numbers and pain) then we may do more imaging.

For now, we rest.