Tuesday, May 27, 2008

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!

Tuesday, May 13, 2008

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.

Monday, May 12, 2008

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"!

Saturday, May 10, 2008

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.
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