Sometimes he looks angelic....

Fun with Cousins

Medical Update

There's really nothing new. Jack saw Dr. Cogen Tuesday afternoon. Dr. Cogen says Jack's optic nerves are flat and pale. This is the same report we've been getting. There is currently no known way to regenerate the optic nerve.

The only new thing he added at this visit was that Jack has an issue with "overcrowding". Dr. Cogen explained that Jack can easily see one object or letter presented in isolation but if he is shown a row of letters or objects, they tend to superimpose upon one another and he cannot make out the individual letters or objects. It makes perfect sense. It's another one of those slap your forehead "I knew that" kind of things.

The report did not bother Jack a bit. He's known longer than any of us that he doesn't see well.

We're going to go back to his vision rehabilitation doctor to see what kind of things she recommends now that he's older. We previously discussed a CCTV for enlarging print but she felt that it was too early. I'm hoping that she help us figure out which kind to get. Jack is VERY interested in letters, spelling, and reading. We'll keep you posted.

Getting It Done

As I mentioned in yesterday's post, we've been busy busy busy around here. Jack is home schooled and David and I both work full-time jobs. You may wonder how we manage to get everything done.

We have a secret. We multi-task EVERYTHING. For instance, the weather has warmed up here and Jack likes to play outside in the pool a lot. So we've taught him to do his own laundry and get himself cleaned up in the process.

First, you enter the wash.

Make sure to soak well.

Ensure that body as well as clothing are fully washed.

Rinse well.

Remove from the wash.

Lay out to dry.

Playing in the Basement

It's crazy how stuff just piles up around you when you are just treading to keep your head above water.

We moved into our house in a pretty big hurry. We returned home from Jack's first cranial surgery to find our apartment flooded and unlivable. We had planned on buying a house when "life settled down a bit" but our plan sped up.

We were fortunate to find our house quickly. One of our main reasons for buying this house was the basement. In the years since we've bought the house, we've been rather busy with surgery, recovery, testing, surgery, rinse, repeat. We crammed all kinds of stuff in the basement to be dealt with later.

Over the past couple of years, the medical stuff has slowed down. We're finally actually working on cleaning up the basement.

It's actually safe to play in now.

Thomas the Train 2012

This weekend, we headed to the local railroad museum for our annual Thomas the Train event.
We always enjoy the short ride on the smaller train before our "big" train ride.

Jack really likes that he gets both Mama and Daddy for these events now that David is not at work every weekend.
Of course, the ride on the big train is for riding with "Unka NO-uh".

*sigh* My "little" brother is growing into a young man and my "baby" keeps getting bigger too.
This year, Jack's cousin, Ethan, joined us again along with their cousin, Seth, too!

Apparently, we ordered our tickets so early this year that they did not know our car would be out of order and not be part of the ride. We were moved to a double decker car. David and Noah got to go check out the upper level.

And we were able to get a group shot of all of us.

After the train ride, we had one of my favorite moments of the day...

Dad (Opa) playing "I'm gonna getcha" with Jack.

Cuddly Kitty

Before Jack was born, our cats were all cuddle, all the time with me. Everytime I sat down, a cat jumped into my lap. As Jack grew, the cats would sort of snuggle against my pregnant belly like it was a nice pillow. Here's Dusty, Jack, and me in December of 2004 (Jack was born at the end of May 2005).

Since Jack's birth, Jack has pretty much taken over my lap and I don't sit nearly as often as I used to. It's taken nearly 7 years but Jack and Dusty have worked out their own way to cuddle. Jack has only recently gotten gentle enough and Dusty has learned to tolerate the squeezing.

Our neighbor calls our house and yard "Jack's Adventureland." Everybody seems to have fun at our house.

Crash Compromise

Sometimes little boy needs and Mama needs don't match. At those times, I try to ask myself if there isn't some way to meet every one's needs. Jack jumped on his skateboard one evening and began crashing into our laundry room door over and over and over again. I was pretty sure that "Safety Dave" would not approve since it would be pretty easy for Jack to lose his balance and whack his head on the wall or the molding. Also, I did not think it would take long before I had a hole or at least some kind of ding in my laundry room door. So what's a Mama to do? I grabbed some pillows and

Couch to 5K!

I'm on week 4 of a "Couch to 5K" program. I actually started with The Runner's World 8-Week Beginning Runner's Training Program. I was about 2 1/2 weeks in when I realized that there was a blackberry app for the "Couch to 5K" program. I downloaded the app and switched over to the 9 week "Couch to 5K". I happily posted to twitter and facebook that Jack and I are already reaping the benefits of my increased energy levels. A friend asked if Jack was doing it with me. Well, no, I had been doing the program on my treadmill after Jack went to bed or was otherwise occupied (usually playing with Daddy) in the evenings. But Steve's question got me thinking, Why not? We've got a nice trail nearby and Jack can safely ride his bike while I run and walk.

How'd it go? Jack loves the app. It boldly announces "Get ready to walk" (or jog as appropriate) and then "Walk" (or jog). Jack found this hilarious and kept repeating whatever the app said while giving that infectious giggle of his. Unfortunately, he wasn't very good at following the instructions. When the app guy announced "Run", Jack did this

When the app said "Walk", Jack did this

So I jogged circles around him and would give him a little push to get him going when he stopped and I'd go ahead and run to catch to up with him when I was supposed to be walking. When the program said, "You're finished", we were still on the other end of the trail so we walked/jogged back at Jack's pace. Overall, it was a good workout! He pushes me further and harder than any app could.

Happy Mess

Do you ever wish there was some way to edit a photo that looks like this?

This is the kind of photo that I might crop or not post at all to minimize the amount of my messy home you might see at any one time. You see, my house is not going to be featured in any parade of homes any time soon. My home is not decorated. Really! Well, unless you think early elementary school is a decorating style.

I go to other people's homes and even though they have small children their homes are beautifully decorated and neat and void of dust. And I feel like I'm not enough. I feel like I should be able to do more because these people obviously do more than I do.

Then I read something like this blog post from Power of Moms that made the rounds on Facebook a couple of days ago. And I remember....I AM Jack's mom and darn proud of it! There are lots of people in my community that don't know my name but they know I'm Jack's mom.

I don't know how Jack would like it if our house was posh and dust free but it's not and he's happy. I would still like to have the energy, creativity, and general polish of these other people but all people are not made from the same mold. Isn't that what I want Jack to know?

So there it is, world! Look at the mess all around Jack in the picture. No that's not a playroom in our house, it's the living room and this is how we live. And we're happy!

Determination Defined

Dictionary.com defines determination as "the quality of being resolute; firmness of purpose."
Let me illustrate determination for you. This guy jumped out of the pool and decided to head for a walk.

Notice he has no shoes on.
These little piggies were fused together at birth. Thanks to the skill of Dr. Fearon he has five little sensitive piggies on each foot. He came to the rocks and he kept going.

This is the face of determination. I could tell by the look on his face

and very slow pace that he was in pain BUT he was not going to quit. As he gingerly stepped his way through the rocks, he fell and skinned his knee.

I thought surely he would stop and let me carry him back to the sidewalk.
He persisted.

He made it halfway across the rocks before he asked me to carry him back to the pool.
That's determination.

Tummy Time!

After swimming the other day, Jack said he wanted to lie down and take a nap on the driveway. Of course, I grabbed my camera to prove to the world (well the world of Facebook and Twitter anyway) that he does lie down. He did not lie down long enough for me to snap a picture. Instead, this is what I got. Looking at this picture just reminds me of so many baby pictures that friends post showing their babies joyfully doing "tummy time". We don't have many of those joyful tummy time pictures. As in all things, Jack does things in his own time.....

The Easter Tradition Continues....

I don't know why I didn't do a post of Jack ignoring his Easter basket last year. I'm sure he did....just like 2010 and 2009. Anywho...this year I thought that I might have found the ultimate "hook". I found this big tractor trailer truck complete with two construction vehicles on sale at Publix after Christmas. It was only $5! It would not fit in a basket but that's okay. Who needs a basket when you have three new trucks?!!? I also bought a couple of "Cars" spinning tops and a yoyo ball that always comes back.

Here's the little cutie waking up and staying in bed when I said, "Do you want to go see what you got for Easter?" He actually laid back down and said, "Mama lie down you. Stay bed." [Mama lie down with me. Let's stay in bed.]

We finally coaxed him out of bed. Oh yeah, this was my first year having help to create Easter basket interest. This was the first Easter that David did not have to go to work. It is really hard to get the interest going and take pictures. As you can see, he sort of begrudgingly took a look at our Easter offerings....

and marched off....

"Wait!" said Dave. "It's spinning!" At this announcement, Jack spun around

and watched with much interest

until the tops stopped spinning and then he plopped down on the couch to watch a little YouTube.

"Awwww..." you say, "Did he enjoy anything maybe later in the day?" Why yes he did....his breakfast (his nearly daily waffles and sausage)

and hanging with his favorite peeps.

We took him out bike riding which turned into bike riding, running around, and general happiness.

We hope you had a great Easter!

Mirror, Mirror

A friend's post (http://www.graspingforobjectivity.com/2012/04/unlabeled.html) got me thinking about this again today. When Jack looks in the mirror, he likes what he sees. He likes to look at his reflection in mirrors, in glass, on shiny surfaces. When he washes his hands in the bathroom and glimpses himself in the mirror, he takes a good long look and declares, "so handsome!" Because he still doesn't express himself well enough, I don't know if he says "so handsome" because we've said it so much or because he truly finds himself so nice to look at. Jack's craniofacial surgeon says Jack is old enough and big enough and can have his midface operation. We are trying put it off as long as possible. Dr. Fearon says we can wait as long as Jack does not develop a breathing issue (we've got the Bipap for his sleep apnea already) or when he develops a self esteem issue. I don't think we have a
self esteem issue. Jack seems to like himself a lot and he does not seem very interested in anyone else's opinions except those who are close and love him dearly. But I'm a mom so I worry a little (okay I worry a lot!). I hope that we have given him a firm, loving foundation built on the knowledge that he was designed by God for a special purpose and gifted to us to love and adore and help him. But have we gone overboard in telling him how wonderful we think he is?

What do you mean the water's too cold?

My old phone died. I have a hard time with change but a new phone comes with new software....in this case, photo editing software. And that's been fun!

Here's the story of a warm day and a pool full of cold water....