St. Louis Through The Eyes Of A 7 Year Old

So busy round here getting ready for the end of school, dealing with sick kids, and getting ready for trips. Here are the photos taken by Matthew from St. Louis last week.

First, just for fun. This was what the squirrels were doing at 6 am.


Hospital waiting room.

Walking to our room.

Our room.


Chairs in the room.

Shoes off.


Matthew's file.


Matthew's...nose.

Exchanging emails.


New friends.


Casting for a new brace.

The newest AFO.




Today is the last day of school. Hoping that means things will get back to a calmer pace. I need to take Matthew's AFO in to the orthotist here for adjustments. And for a discussion of a leaf spring AFO.

No Cast!!

For the past year it has felt like groundhog day. Go to St. Louis, get cast, go home, foot turns, go to St. Louis, get cast, go home, foot turns, go to St. Louis...

This time, it was different. This time, Dr. Dobbs felt his foot and said it felt good. We showed him how Matthew is starting to move his foot to the outside. Dr. Dobbs looked up with a look I had never seen before and said, "that's impressive"

And this time, he recommended no cast.

He also recommended starting E-stim with p/t.

What a different appointment. What a great feeling!

Matthew also got a new AFO made and we are discussing trying a leaf spring AFO like the one below.



Need to discuss this more with Matthew's p/t and orthotist.

It has been a busy week but I hope I can find some time to update more details of the trip including meeting another child with the same problem, and some pictures.

Right now, we are off to Matthew's last baseball game, the one we thought he wouldn't be able to play.

Life is good.

Meet Me In St. Louis

I've met someone...online. Boy, that sounds bad.

Just over a year ago, I found a mom with a little boy (now 2) who has the exact same diagnosis as Matthew. Exactly the same. Clubfoot, nerve damage, leg length discrepancy. It has been a great year of sharing, comparing, asking questions, and trying to figure things out. And now, finally, we are going to meet in St. Louis. Her little boy and Matthew both have appointments with Dr. Dobbs at the same time. Not only that, but we get to fly in Sunday afternoon and visit at Haven House.

I am really excited to see her little guy for many reasons. I want to see another little one with the same issues. I wonder if he has the same gait Matthew had, the same tripping problems, the same look to his foot. He is also sporting a new type of brace that I am very interested in seeing. One that could allow for more calf muscle development.

And I am excited to meet his mom. Talk with someone who is dealing with the same issues of AFO's, shoes, bracing, p/t, etc.

So, Jamie, I am really excited to meet you! If Haven House is funny about leaving messages for each other, we will be in one of two places, crafting in the craft room, or, most likely, running around kicking balls, throwing Frisbees, shooting hoops, in the gym. Oh, or maybe outside hunting for praying mantises. Just follow the noise.

I'll update my blog when I get a chance. Still hoping for no cast, but prepared for one.

Getting Ready

We leave for St. Louis in four days. Trying to get the last things done before we go.

Crossed this one off my list yesterday. New pads for the crutches.

Old pads.



New pads.


I had to raise them up a level as he has grown so tall. Only one more adjustment left on these.

Matthew was actually excited about the new padding. Hoping that means he is coming to terms with the cast possibility. I hope so. He just received another birthday invitation. This one for a pool party the weekend he could be in a cast.

Camping

Boys. Nuff said.

Their latest fascination while camping is fishing. The love to go through their tackle boxes, organize, reorganize, compare, and occasionally sneak a lure from Daddy's tackle box.

This is what happened Saturday morning while organizing...something went wrong I suppose. I call it Fishing - You're Doing It Wrong or Gettin' Jiggy With It.





Such a proud mommy moment.

Things did get back to normal, or as normal as boys can be after trying fishing and deciding the sand was more fun. Notice our friend's little girls so clean. My boys did not stay clean.



I didn't get a picture of Matthew. I was either laughing too hard, or was so unfazed by the filth that I never thought twice about it. Here is Ryan, much cleaner then Matthew ended up.



It was a wonderful weekend in the sun with great friends. Just what we needed on the last weekend before heading back to St. Louis and the possibility of casting again.

Heros

Matthew had physio last week. We talked about the possibility of casting again. Matthew told Steve he didn't want a cast, didn't want to go to his friend's birthday party in a cast because they were going to play floor hockey. He doesn't want anyone to know he has a cast.

Steve told Matthew that if the doctor said he needed a cast, it was important to get it. Then he told a story of when he was in a long leg cast for 6 weeks and played floor hockey in it. Matthew looked disinterested as the story unfolded. He busied himself with his Hot Wheels cars he had brought. But I knew better. He was absorbing and processing every detail Steve shared.

You see, for what ever reason, Matthew doesn't let a lot of people in close. Sure, he is a friendly kid, popular in his class. But when it comes to sharing his thoughts and fears, to being close, there very few. And Steve is one of those lucky enough to have made it into that inner circle. What Steve says is very important to him.

So I wasn't surprised the next morning when he told me he thought he could play floor hockey at his friend's birthday in a cast.

A hero is someone who can be looked up to for their actions. I think this fits.

Thanks yet again Steve.

"I Am Not Going"

We leave for St. Louis in 11 days. I've been trying to prep Matthew for the possibility of a cast. In the past, he has been very easy going about this.

I don't believe in hiding things from kids. I told him that if he gets a cast, he will miss the last week of baseball, and that he will be in a cast for the birthday party of a friend. (the birthday party is at a gym where they will be playing hockey and soccer)

Matthew hid his face and wept quietly.

"then I am not going to St. Louis"

This time, maybe it is too much.
This time, maybe he is missing too many things.
This time, he is very sad.

Makes me a little sad too. I sometimes forget how much he has been through. What a brave face he puts on for the world. That he is only 7 yrs old.

I have 11 days to get him used to the idea.

And maybe, just maybe, this time...there will be no cast. It is my secret hope that I can't share with him.

Baseball

I am really loving baseball, and so are the boys. And they look so cute in their uniforms too.

Matthew wants to be a big hitter



Ryan coming home





I only have one complaint. White pants.

Who ever decided on white pants for little boys baseball obviously never did the laundry.