Doing What You Love

So I decided to take a few minutes a couple of hours ago to post a few pictures since I am so far behind on posting and I keep hearing, "What's going on? Is everything okay? You haven't posted anything on the blog in a long time." I started going through my pictures and picking some good ones and the more I looked through them and got them ready for posting, the more my mood improved! We have been very busy and blogging is one of my activities that has fallen by the wayside. Well, call me a dork, but I realized today that I really really enjoying blogging. I have missed this so much and I did not even realize it!
It's been a busy summer. It's hard to believe but it's time for school to start soon. Jack begins preschool this Thursday. We've met his new teacher and she seems like a good fit for him. I'll keep you posted on school!
Now back to the pictures....
We took Jack to the toy store on his birthday to see if there was anything he really particularly wanted. He almost never asks for anything so we were not really sure he really wanted anything until he laid eyes on this car....
It's actually meant for a younger child to be pushed by a parent but Jack got right in and started pushing himself around and did not want to leave. Like I said, he hardly ever asks for anything so the car came home with us.
Jack loves water....

He usually catches up on his reading before going to sleep....

Who couldn't love this guy?

Sidney has moved nearby so you will be seeing more pictures of him I'm sure.

We finally took a family vacation. Nobody worked. Nobody saw a doctor. Nobody was recovering from surgery. We all just relaxed but first we had to drive there....

Where else would we go but to see Bill and Lucy at the beach?

Lucky for us, Rob, Bobbie, McCahill, Jeanie, Bob and Ruby were all able to come down to the beach, too. Rob brought his big tent and nobody got sunburned playing on the beach!
Here's a great picture of Rob and Jeanie and McCahill on the beach.

Here's Bobbie looking fabulous in her beach cover-up.

It's scuba McCahill in the pool.

Supermodel Jeanie

Here's Jack on our first full beach day enjoying his lunch after a dip in the ocean.
That first day we were a little more cautious.....


We stayed safe but got a little bold when the ocean was calm...
But the seas got a little rough sometimes...
Sweet McCahill rode to dinner with us and kept Jack company.

Syndactyly release....hundreds of thousands of dollars
Five fingers in the sand....priceless

Last but not least...sometimes I look at Jack and I think, "He's HUGE!" How's this for a little perspective?

Sand and Water on a Grand Scale

Summer Vacation

May "Local" Apert Gathering

One Saturday back in May, Jack and I traveled about 3 hours east to meet up with some other children and adults with Apert syndrome. We had a blast. if you'll remember, last year, Jack was not feeling well when we traveled. This year he was feeling good. He enjoyed wandering around a lot. One of the coolest things was how he really took to Morgan. Well it's not exactly unusual for Jack to like a pretty girl. What was super cool is that Morgan really liked Jack too and she did not seem to mind the "love that tackles." (When Jack hugs other kids, he often knocks them down.)

Here they are....it's Teeter and Cat. Without Teeter, there would be no Teeter's page and the world just would not be the same!

This is apparently how Miss Carmen Rae wished to be remembered....

Jack and Jack meet again with Nicki and Morgan looking on....

I really like this picture of Liz....good job, Carmen!

Susie, Rebecca, and Morgan on the swing....

Let's see now, what am I gonna do about this?

Isn't this a cute picture of Nicki? Swing, swing!

Posers!

This is what love looks like...

Most of the gang.....

King of the Playground!

I am seriously behind on updates and pictures and I promise that I really will post them.....eventually. Anyway, I just had to share about Jack's latest triumphs. We have been taking Jack to our local parks since we moved to our small town. He has always loved being near other kids but other than swinging and kind of walking up and down the ramps a bit he did not really play on the equipment. Not so anymore! Big boy Jack is now climbing the climbing walls. We just help him to get his feet onto the little ledge but he pulls up with his hands and uses his legs to help push up. He is independently walking up and down the stairs holding onto the rails. He independently slides down all but the steepest slides. He climbs the bars with assitance for where to put his hands and feet. I think he could be more independent there but we are a bit cautious. He is also becoming a lot more social saying, "Hey" and waving at people. We were very proud to see how quickly he learned to follow !
playgroun
d "rules" such as no climbing back up the slide.
He is so ready to start "big school". At his summer "school" (therapy program), they are getting the kids used to having group rather than one on one instruction. I was very concerned about how he would do with transitioning from one activity to another. Now I have no idea what I was so worried about! Jack is doing much better with tolerating seated table activities. He still does not LOVE painting and coloring but he will participate long enough to finish the short tasks they are given. He is actually playing with play-doh for short periods. David has started implementing a short "table time" in the afternoons to help Jack increase his ability to stay on task and it's going well.
Oh yeah, talking! I have just taken to randomly asking Jack if he can say certain words and you would be amazed how many things he can say. He is using a little speech to communicate such as "people" for his Little People movie. He still signs quite a bit and has learned a few new ones. It is so adorable to see Jack do the hand motions that go with songs like Wheels on the Bus. It's funny because he'll hear the name of the song and start doing the motions before you start singing so he's a little bit ahead of the song.
Breathing--that's important! With the reflux seemingly under control and careful monitoring to avoid allergen exposure, Jack's congestion has decreased dramatically. We've been able to leave some Puffs Plus at the store for other consumers. More importantly, we've reduced his Bipap pressures and he seems to rest well most nights.
Teeth. He's teething again. Some of the teeth come in and we are surprised to see them. Others, like the ones he is currently getting cause the drooling and the pain.
I'm sure I've left some stuff out....but don't worry, there will be more posts.
Join us in celebrating Jack's continued development.
Sent from my Palm Treo

Yep, He's Three!!!

Persistence...that's how I am going to choose to see this. Jack is very persistent and is trying to order his world the way he would like it to be! At three, he wants activities, food, drink when he wants them and not a minute before or after. At three, he does not want to nap and thinks that sleep itself is just a waste of his time. At three, he wants to live outside outside outside outside!!! Whew! Is it possible that he truly is communicating MORE? Yep, it is. And he is communicating that he wants things a certain way. He's kind of like his Mommy! Pray for us as we try to teach him that the world really does not revolve around him! :)
This is a difficult phase right now but now that I think about it I'm really glad to be here!!!

Birthday Party 2008

This year Jack had a small yet ambitious two part birthday party. Jack loves loves loves a few things--chief among them are water and other children. So our theme this year was water and other small children. The last two years we had really large parties with Children's character themes. David and I had always said that we would not have large parties for the first couple of years of our children's lives but who knew those first few years would be so tough? Anyway, the last couple of years were more about celebrating Jack and not so much about Jack celebrating. This year, since Jack is older, I truly wanted the party to be about him having fun and doing what he likes. It was an unusual party....no children's theme/cartoon/movie character since Jack does not really have a favorite and no singing Happy Birthday because, for some reason, it makes Jack cry. I tried to limit the number of guests because I did not want Jack to be overwhelmed and not be able to enjoy himself. I think it turned out well. I know that he had a good time so that's really all that counts. Special thanks to Oma (Anne) for providing top notch grilling services and Auntie Ninfa for delivering the dairy free birthday cake!


We started the party at our community pool since Jack loves to swim. See that smile?
Opa has a cool underwater camera. I love this picture of my little brother Noah.
Swimming, swimming, in the swimming pool......
After the "big pool", we headed back to the house where Oma grilled some excellent hamburgers and hot dogs. We turned the back yard into a soupy mess with the splash mat going and we filled up our "lounge pool".

When you're dairy free, you get two cakes. Well, you only get to eat one but still....

Jack really loved playing with his family and friends at the party.

It was a great day. And it ended with all the party guests (the adults anyway) cleaning up for me. Who are the best party guests ever? Jack's party guests, that's who!
I can't believe my sweet baby is three already!!!

The Graduate

At three years old, Jack has already had his first graduation. We are really going to miss Jack's wonderful "school". Luckily, he is going this summer or I would have never made it through the graduation ceremony!
Jack is seated way over at the end of the little chairs to the right in this picture.
There he is with Ms. Jennifer, his Friday morning volunteer, sitting behind him.
Here's Jack and Ms. Jennifer getting Jack's "diploma" from Ms. Betty.
"Wooohoooo....I got it!"
Jack and Caleb after the ceremony. Caleb is Ms. Catherine's (Jack's Wednesday morning volunteer) son. He and Jack sort of matched, didn't they?
Jeanie and Elise enjoying cake at the reception.

The graduation ceremony was incredibly moving. I am choking back tears now as I am remembering the lovely powerpoint presentation that they showed of all the graduates and watching all of Jack's graduating classmates make their way across the stage. There's no way I can capture the magic of our time there at that "school" in this blog. The school is supported completely through private funding and donations. If you find yourself wondering how you can monetarily make a difference in the life of a child, please consider donating to Jack's school. I did not intend to hijack this post to ask for donations but if you would like to give, please click on the firstgiving widget to the left.

Happy Birthday Jack!

Happy Birthday, Jack!

***Blog fans--I know I am behind. Please don't give up on me yet. I will soon post about recent events and there will be photos. I promise!

What do little boys do before sedated CT scans?

As you can see, Jack was completely stressed out before his CT scan last Tuesday. Yeah, right! He just drove this little car around the pediatric day surgery area. If you check out our buddy Sid's pics, you will see that he drove the same little car while waiting to go for his surgery. Until I actually had a little boy of my own you could not have made me believe that there is just a fundamental difference between boys and girls. I would have assumed boys are just encouraged to be "boyish" and girls "girly". I was.....wait for it.....wait some more.......I was wrong. Jack is ALL boy and it has nothing to do with how we've nurtured him. There is just something different about boys and girls. And you know what? That's okay. :)

More Pictures

I got the okay from Kayla's mom, Ami, to post her cutie pie's picture. We took these pictures in Dr. Fearon's waiting room. Nobody seemed to mind that we sort of took over. Well, it was just Ami, Kayla, Bethany, Kyle, Bay, David, Jack and me while we taking pictures. Other patients arrived when we were all saying our goodbyes so it worked out good. I like these next two. See how Jack and Kayla are checking each other out?
Isn't that sweet?
Girls. Girls. Little girls just feel so light and airy compared to my little tank Jack.
Look at Kayla stretching out. She is going to be taking off soon.

Love Water and Making New Friends

Before we left for Dallas this last time, we had a few very warm days so we got a new Elmo sprinkler mat. It's great for kids who love water but aren't so sure about having a sprinkler just randomly hit them with water. We also got a new pool. This year we decided that Jack's favorite part was just being in the water and we did not need any fancy stuff. He loves it already! Another great thing about the sprinkler mat? Put it in the pool and use it to fill up the pool. No more annoying waiting for the pool to fill up to play. Jack just played in the sprinkler water until there was enough water to splash. We had a great time with our neighbor and her cousin playing in the pool with Jack. *I did not get permission from their parents to post their pictures so you'll just have to take my word for it. :)*
Jack hanging out at the hotel before surgery. The Residence Inn Dallas Park Central really is a wonderful place to stay if you are ever in Dallas. The rooms are nice and the staff can't be beat.
Here's Jack headed off to surgery with Francesca. She has transported him from the Pedi Day surgery area to the holding room for almost all his Dallas surgeries. She is always smiling and friendly.
After surgery, we were able to meet up with Bay and her family in Dr. Fearon's office. Bay is adorable and so friendly. She practically leapt into my arms. As you can see, Jack did not mind.

I think she liked me best but she liked David, too. ;)
Bay and her mom, Bethany
Jack likes hanging out with other big guys like his Daddy and Bay's dad, Kyle, is a nice, big, tall guy.
We also got to meet another cutie named Kayla. As soon as I get permission from her mom, Ami, I am going to post a precious picture of Jack and Kayla "sharin the love"!

Bye Bye Dallas?

Hey everybody, sorry that I have not kept everyone upated as well as usual. This trip seems to have taken a lot out of me. I got sick (some kind of stomach virus that Jack caught the following day) our first evening in Dallas and I still have not recovered my energy. Anyway, we are going to be heading back home this evening.
Jack's neurosurgeon and craniofacial surgeon now agree that Jack does not need a cranial reduction. As Dr. Fearon put it, he does have some extra room in his skull. How much room is too much room? Nobody really knows. Jack is at some increased risk for head injury because of this extra room. How high is the risk? Nobody really knows.
The only bad news we received is that Jack's reflux has not been under control like we thought. He apparently just got used to the pain and no longer cried out like he did before. He had erosions as high as his vocal cords. I feel terrible about it. We are resuming his Prevacid and it will cut down the acid and help heal the erosions.
Besides the endoscopy and CT scan, Jack had his left ear tube replaced and had his left eye stitched to keep the eye from popping out.
As long as Jack continues to do well, his next major surgery will be a midface surgery. Dr. Fearon says that he expects Jack to need the midface surgery a bit early on because of his obstructive sleep apnea. I was encouraged a bit because Jack's sleep apnea has improved a bit since he has grown. Dr. Fearon says that children with Apert syndrome and severe obstructive sleep apnea like Jack usually see a small amount of improvement with initial growth of the airway. Then, because the midface grows at 1/3 of the rate of the rest of the body, the obstruction gets worse again. We were really hoping to delay the midface by using the Bipap but Jack already requires really high pressure levels. Dr. Fearon said that he is expecting to do the midface surgery at about age 5.
In the meantime, Jack will continue to have ophthalmologic appointments every 6 months to monitor his optic nerves, a MRI every year, and a sleep study at least yearly.
That's all the news (I think). I'm still very drained and may have left something out. I'll post more from our trip after we get home.
Sent from my Palm Treo