Make a Wish

We just received a letter today that Brayden is eligible to receive a wish!

The next step is to meet with volunteers for an interview and determine an appropriate wish.

In case you are not familiar with Make-A-Wish Foundation

Since 1980, the Make-A-Wish Foundation® has enriched the lives of children with life-threatening medical conditions through its wish-granting work. The Foundation's mission reflects the life-changing impact that a Make-A-Wish® experience has on children, families, referral sources, donors, sponsors, and entire communities.

Wanna know what we will more than likely be wishing for?

Take a guess.

Why all the crying?

For the past week or so Brayden has not been happy. He would be calm and then burst out with a scream/cry. Inconsolable at times. We tried so many things to help him.

One afternoon after many attempts at consoling him, we rolled him outside to "play" with Carter and Luke. He fussed still. He only stopped when they pushed him around for a congo line.

They stopped, he started crying again. So congo line again!

We were at the doctor this week for Carter. Asked to see Brayden's doctor while we were there. Describing he was miserable and we did not know what to do for him. Could he be sick? We checked typical symptoms at home...no fever, etc.

After unsuccessful attempts at getting bloodwork and urine, they sent him for a kidney ultrasound...looking for possible kidney stones (we have been waiting for an ultrasound for this anyway). He does have one kidney stone in his kidney, which should not be causing him pain.

Then last night, I am changing his diaper. It looks like a kidney stone. He passed one. I have it in a ziploc bag. Not really sure what we are supposed to do now but I have phone calls into the doctor.

This is not how summer was going to go

All the boys have finished up school.

Plans for the summer include:

A trip to the beach (only a week away).

Lots of sports camps for Carter and Luke.

I get to go to NYC with a friend (so excited for that).

Lots of adventures and pool time.

This is how our summer started...

Jeremy cut his leg. He cannot move much and he cannot drive at all. For the full story check out the family blog.

But guess who is loving it? Brayden, because he can snuggle with his daddy for hours and hours. The dog loves it too, she can lay around with them.

We love hospitals and medical gear at our house (serious sarcasm).

Here's to an incident free summer...

Last day of school

Today is Brayden's last day of school.

I cannot believe it.

He went to school.

He made it through the year.

Going Monday, Tuesday, Thursday mornings.

He rode the bus to and from.

I cried this morning. I am crying as I type. Not exactly sure why...happy, sad, all of the above. Kind of overwhelmed that this is his life.

This school year he has grown up a lot. While he did not meet all of his IEP (Individualized Education Program), he went to school and rode a bus! That is enough for me.

The teachers, classroom aids, therapists have all been amazing. They love the children and work so hard to bring out the best in them.

Brayden spent many days in the classroom grouchy, seemingly overwhelmed with everything. But he did have good days. He loved circle time, which included songs, switches and fun. He would sleep in school but be awake for circle.

He really got the hang of the routine for school. Most mornings he was awake and ready to go. Although he does not like getting dressed, face washed, hair brushed etc (but what boy does). By the time he made it to his wheelchair for the bus, he was usually sporting quite the grouchy face (like the picture from today). I have been assured that once on the bus he was content and sometimes happy.

Several items that he used in school are being sent home with him for the summer (and he will be ready for next school year!).

I cannot believe he went to school.

Happy last day of school big boy!

If the shoe fits...

Brayden's AFOs. I am not a fan. Brayden does not mind them at all, in fact I do not think he even notices them. I worry about how they look and what awful shoes we have to get that will fit those braces.
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I like for shoes to match the clothes. Yes my boys have several options for shoes. Trying to find one option for Brayden was a challenge.
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I searched for shoes that would fit. I found some, they are a perfect fit and do not look too bad. Would you believe the shoe is called the Brayden by Stride Rite!?
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How do we handle AFOs in the summer? It seems so hot to have on big socks, the AFOs and shoes.

Stander and Park

Two separate topics...one busy week.

Stander

Brayden has been working on being in a stander. About 10 minutes once a week and that seems to be enough for him right now. Over the summer we will borrow the stander to have at home. The goal is to have him in it a few times a week for longer periods of time and even "play" a bit while in it.

Jeremy and I (with Luke since he is done with preschool) came in to the class this week to observe Brayden in the stander. I was learning about it, Jeremy and Luke were comforting and talking to Brayden.

Park

This park idea has been mulling around my thoughts since last spring. I cannot believe that it is actually happening and it is much, much bigger than I ever imagined. So many acres filled with so many things to do. We presented to our local county parks and rec. They liked all of the ideas, they were pleased at how much work we have done and answered their questions before they even had to ask. Now we wait to find out what they need us to do. I will be back with more information soon! And ways you can show your support!

All good! Really good!

Brayden in the stander this week.

The park presentation.

I will be back with more details.

A dream park

I have been dreaming big. Dreaming of a big park that would accommodate all three of my boys, meaning accessibility for Brayden.

This week we are presenting to our local Parks and Rec. We hope to get some sort of approval so we can continue with design and start our fundraising plan.

Myself and a few others have been working the past several months: researching, calling, gathering any and all information about accessible parks. Surprisingly, so much support for the community.

We have dreamed big, bigger than most parks.

We formed our own non-profit.

The shape of the playground is our county (like the blue image above). In different sections of the county we plan to have items to reflect its unique characteristics. A large part of the county is involved in the equestrian lifestyle, what could show this better than a CAROUSEL! The western part of the county is rural so we plan for a large barn play structure. The eastern has the Dulles airport. And oh so much more!

Here are some some draft concepts.

Around the outside of the playground will be a nature path. That serves for a trackless TRACTOR RIDE (like a trackless train). The NATURE PATH will also have many niches with nature play opportunities like a sensory garden or labyrinth maze.

So exciting! If you think about it, please pray for our presentation, this Wednesday.

Storytime in our House

Carter and Luke love Brayden's new bed. Not only for the features of raising the head and feet but they can crawl into bed with him.

Brayden loves it.

Many, many times Carter brings in a book to read. Carter on one side of Brayden, Luke on the other and they read.

Everytime Brayden nestles right up to Carter and listens.

Back to the regularly scheduled programming

Did you know life does not stop when you are in the hospital?

Even though Brayden was in the hospital last week, literally giving us a scare for his life, our life and activities kept on going.

Laundry still piled up and piled up some more.

Carter and Luke still had school. Some how we managed to squeeze in all of Carter's homework one evening between the chaos.

Jeremy coached Carter and Luke's soccer.

Luke had his last day of preschool.

Planning for the park (which I will talk about later) was in full swing.

Jeremy still worked everyday.

Dog needed her medicine, food, water and love.

Birthday party.

Shop for birthday present.

Camping for the weekend, Brayden and I stayed home to catch up on laundry or something like that.

Shop to replace old camping gear.

Sleep. Catch up on sleep.

Today Brayden and Carter back at school. Luke at camp. And I am attempting to get my mind back to the regularly scheduled programming.