Thursday, July 30, 2009

Non-accomodating Water Park?

I just got off the phone with a local water park, that just opened this year. I thought it would be fun to go there as a family before summer came to an end. I called to find out about wheelchair accessibility.
Here are the questions I asked and the responses...

Is there an entrance that can be used for wheelchairs?
Well, you will have to get someone to let you in at the different entrance. We are busy and it might take some one awhile to help you.

Can we arrive a few minutes early so that someone can help us?
So, you are asking us to make an exception? Well, I don't think so. If you really have to, you can try but we will not guarantee that.

Is there an easy place to park a wheel chair once inside?
The water park is more of a place to play, so there are children everywhere. This might not be a place for you to bring your child.

Yes, I am frustrated by the responses. Especially the last one. They do not have any idea about my son other than a wheelchair (not his age or development). We take Brayden to other pools with not much of a problem other than jockeying for an umbrella.


My hope is that the person I was talking to did not know much and I am trying to give her the benefit of doubt. I might try to swing by there and talk to someone in person (or complain).

Wednesday, July 29, 2009

Crossing the Great Divide

One of Brayden's brain abnormalities is Agnesis of the Corpus Callosum, ACC. The Corpus Callosum is the matter between the two halves of the brain, the communication between the sides. Brayden has no Corpus Callosum, notta, nothing; in addition to all of his other brain abnormalities. His body operates on two sides, not making contact with the other side, bringing things to mid-line does happen without assistance or sometimes not even tolerating us putting his hands together or legs together.

Usually Brayden's arms and hands are by his side. Just this past weekend, I noticed his little hand stroking his other arm...amazing. His eyes were big, like he was surprised to find he had two arms. He sat quietly and did this for several minutes. Since then he has done a little bit each day and each time it seems like he is discovering something new.
Oh and this picture is from the pool, when he lasted 45 minutes in the pool and even kicked his legs in the water.

Monday, July 27, 2009

Finally Vacation Photos and little lessons

OBX, our destination. If you do not know OBX, then you do not live on the east coast. The outer banks of North Carolina was the place of our vacation this year. It was wonderful, wonderful, wonderful.

First lesson.
The Lord provides. How?
The friends that we vacationed with, we have known before children. We all live in NoVA but not very close. Over the years and having children, we have always loved their friendship. The Lord paved the way for us to be friends. Not only for friendship but support. They have four children, we have three. They have one with special needs and so do we. Our special needs children are extremely different in terms of their needs but so many of our feelings, emotions, change in life,...are much the same.

Provided great friends.

As I was preparing to pack for our vacation, I became concerned about accessing the beach. Anyone who has been to OBX knows the dunes divide your house and the beach. To get to the beach you must, at most places, climb a flight of stairs up and down to get to the beach. Hmmm, how was this going to work with Brayden and all of the beach gear. I called the realty company to ask about how best to get our son to the beach. They offered no insight. I was prepared to haul gear and children up and over the dunes, probably several trips back and forth, being hot and ready to jump in the ocean. When we arrived Jeremy rented a jogging stroller, which Brayden loved. And then we explored the community where we were staying...gorgeous homes, a community pool, quiet neighborhood...and wait what was that?! The community had all handicap ramps to the beach, no flights of stairs to climb!

Provided a ramp. Path much easier than I expected.

Second lesson.
We move even when we do not realize it.

I was sitting on the beach with Brayden watching all of our crew play in the ocean. Some were jumping the waves, others boogie boarding and they were slowly drifting down the beach. They did not realize it until they looked up to see where they had been, they had moved more than they realized.

We just completed Brayden's annual review for his early intervention (occupational and vision therapy). We go over the goals written about six months ago. I did not expect much. Brayden seems to be about the same to me, overall. As the therapist was reading through the goals, we realized Brayden met most of tolerating sitting in a bigger chair for a period of time, looking at something for longer then 3 seconds and several others. I did not realize how mush Brayden had done until I looked at where we had been.

Reflect, you might be surprised at how far you have come.

All that to say, the beach was nice. The time with friends, the relaxation and everything was nice. For more photos (an awesome picture of Brayden smiling), check out the family blog.

Saturday, July 25, 2009

Brayden and the Lawyer

Brayden met with a lawyer.

Well, not really him. Jeremy and I did, Brayden tagged along.

We are in the process of setting up a Special Needs Trust for him.

A Special Needs Trust similiar to a will but a holds money specifically for Brayden. In order for Brayden to always be eligible for government aid (like his waiver and Medicaid) he can not have more than $2000 to his or years from now. This may not sound like a big deal to someone that has no idea how important government aid is to someone with serious special needs, it not only helps take some of the financial burden (picking up the slack of what insurance does not cover) but opens many more doors to lots of programs and services.

As part of this trust, we will appoint a Trustee to oversee Brayden's care. Then down the road, Carter or Luke can take over if they would like. The trust will give guidelines on what the money should be used for to ensure Brayden's care.

The trust is something that other's can give towards...not something that someone has to do but could be a nice option for him for Christmas or birthday. I mean he is our third boy...he has clothes and toys, well we are working on him playing with toys.

Attached to the Special Needs Trust, Jeremy and I are going to add a Letter of Intent. This letter will contain information on the quality of life that we would like Brayden to have in the future, so that others will know how to make decisions for him. Such as, Brayden continuing with school until the proper time, not to be part in a home/institution, activities, things we would like he to be a part of...

Kind of overwhelming to think about but important to do.

Of course Jeremy and I will be taking care of Brayden...just preparing for the future, whatever it may hold.

Wednesday, July 22, 2009

Weddings are fun right?

My brother's wedding was July 11. Luke was the ring bearer.

We all headed to MD for the rehearsal. Everyone dressed nicely...and attempting to behave nicely.

The moment that we arrived. Brayden screamed. He screamed some more and then more. Jeremy worked so hard to calm him. I felt like everyone there was hoping that Brayden would not be disruptive on the wedding day. Then somewhere in the midst of taking him in and out of his KidKart, his feeding tube came out (the tube from the food bag to his tube became detached). We did not notice until he was soaked. He was dripping in formula. We were only a little bit into the rehearsal and then we had the dinner.

In case you do not know me, I am a planner. I have bags for all road trips, day trips and any kind of trip...all for the just in case and things for the kids to do. Since we were leaving on vacation shortly after the wedding I cleaned out the car to have it ready to load for the trip. I took out the bag with Brayden's just in case a change of clothes.

I determined not to miss a moment of my brother's wedding celebrations, prayed that Brayden would be okay in formula soaked clothes.

On to the dinner. Brayden seemed to be doing a bit better. Then the tube came loose again. Formula dripping again. I was stressed and grouchy (so was Jeremy).

Hmmm, how was the wedding day going to go?

To help with Brayden we taped those tubes together so much that I needed scissors to get it apart and we medicated him to help with whatever was bothering him.

The wedding was beautiful. Luke did great as the ring bearer. Brayden enjoyed the music and sang along, thankfully was quite when the music stopped.

For more wedding pictures check out the family blog.

Give me a lift

We went to the Frederick Keys baseball game as part of Carter's camp, a couple of weeks ago.

Brayden comes with some nice perks. Like front section seating for those in wheelchairs and their party. To get to the front section, Brayden (and Jeremy) rode a lift...Brayden's first lift ride. I think the lift was new to the Keys stadium because the staff seemed excited and over eager to use it!

We sat and enjoyed the game with the kids and friends, right by first base.

Tuesday, July 21, 2009

A leak

Yesterday morning we realized that Brayden's G-J tube had a slit on the side. Hmmm...
The food was coming out, stomach/intestinal juices were coming out...not good.

Since the G-J tube is the only way he gets nutrition and fluids, a leaking tube presents an urgent situation.

I spoke with Brayden's GI specialist and he wanted us to come to the ER. I did not. I asked if we could make it through the night then could we come in the morning? The doctor said that it was fine but if at any time he was not getting enough fluids we were to bring him in.

The tube made it through the night (do not even ask how we made it work...the doctor would not be happy with us). Left the house this morning and headed downtown to Children's. We waited in Radiology for the doctor and a room to open up.

We waited over three hours.


The radiologist that works with Brayden's GI team, knows us by now as well as his techs. So we got to bypass the usual shpeal. Brayden was strapped to the table. Out with the old tube...this time it was a bit more difficult than the past several times. The tube seemed stuck and the doctor had to give it several good tugs to come out...if you do not remember Brayden is awake for this procedure. Brayden was mad and hurting. The old tube was out and the new one put in. Looking and working good.

I even snapped a picture. Since we know these people by now, it does not bother me to take a picture. This time with my I may bring the big camera!

Sunday, July 19, 2009

Still here

We are still here.
Just been busy with camps, my brother's wedding and vacation. I will be updating soon with too many pictures and hopefully some nice stories.