NDA

A group of parents, siblings, and those with Norrie's have started an association, Norrie Disease Association. I am helping plan an upcoming conference in August. We now have a website! Check it out:

http://www.norries.org

We are still waiting on official non-profit status from the IRS. But, things are moving.

Blind Basketball Player

Here's a great story about a blind basketball player. Coincidentally, I just ordered a basketball for the blind off of eBay. It has bells in it so it constantly makes noise. It will be great for Max to hear his Dad play and now we'll be able to roll it back and forth to each other.

http://sports.espn.go.com/espnmag/story?id=3967807

Charlotte, NC

This weekend Max and I went to Charlotte, NC. My best friend from high school Whitney's daughter Lily was having her first birthday. Max and I had never met Lily so we thought it would be a perfect time to make the trip. We also got to spend time with my best friend from college Liz and another college friend Carmin.

Lily and Max acted like typical almost 1 year olds. Max ignored Lily until she took his toys and all Lily wanted to do was take what Max had in his hands. Since Max couldn't see her coming he was not happy when things suddenly got ripped out of his grasp. Once Lily starts talking Max will have some warning and be able to put up a fight. Lily is crawling all over the place and starting to walk independently. We wanted to get them in the tub together, but that never happened. Max is taller than Lily, but they weigh the same. You can't tell in the pictures, but Max's head is huge compared to Lily's. His head is like the size of her entire body!!!

We hope to see them more often in the future.

The Flood

For those who don't know, we had a major flood 4 weeks ago. I started a load of clothes before I went to bed and woke up to about 3 inches of water all over the first floor. The pressure switch on the washing machine was broken and the washer just ran all night long. I called a service in and they immediately ripped up the baseboards and flooring. When the baseboards came off they found mold on an external wall. They think it is from the sprinklers soaking the house. Because we don't know how long we'll be in Naples we are renting this house. The owners have been great, but they live in New York. Last week the mold removal finally started. Hopefully, cross your fingers, the flooring and baseboards will be finished this week. I am sick of living like this! For once I am so happy that Max isn't crawling. I would not be able to keep him safe if he was mobile right now.

Nap

Max is trying to cut out his morning nap and move to just one in the middle of the day.  Well, 5:00 rolls around and he is exhausted.  DJ and I would try to keep him awake.  Then he'd go to sleep at 7:00 and wake up and play from 12:00-3:00 am.  Now I let him sleep for no more than an hour around 4:00 and then he goes to bed by 9:00.  It seems to be working at the moment.  This time I lost him while changing his diaper.  His legs are so long!

Cheerio's

Max is really getting the hang of feeding himself.  We're still working on fruits and vegetables, they are slippery little suckers.  He's got fish sticks and chicken nuggets down pat.  He's also getting better with pasta.  You can see a cheerio stuck behind his ear.

Bear

Max's uncle Brad gave him this bear before he was even born. When you hug the bear it vibrates. Max is really starting to cuddle with it at night. This is a collection of pictures of him sleeping with it. You can see where Max ripped his bumper last week during a little fit. I haven't had a chance to fix it yet and it doesn't seem to bother him. You can see how he wraps himself up with a blanket. That must be why they recommend no stuffed animals or blankets in the crib.