Hey all!

We've had a really rough month here. Nicholas needs to be circumcised, not sure if I posted about it already, and is being booked asap now to get his eyes fixed because they have gotten really really bad over the last two weeks. He is going back to the eye clinic again in two weeks for an alignment check and because she wants to keep a closer eye on him until surgery but he does need glasses asap. In two weeks time his eyes have gone from 1.25 and 1.75 to 1.75 and 2.75 not sure exactly what that really means but she said it should be changing that fast and needs to be treated now. We also got the full results back from his CT w/ contrast and after reading it I just wanted to puke, I kept thinking to myself that it was not his report and they must have sent the wrong report over. I didn't think they would be as bad as what they are but it's like two paragraphs of "severe damage to ____, ____ area noted to be small, _____ area has small deformity, severe white matter destruction in ____ area, ____ area has minimal white matter, partial right plagiocephaly noted, patient has a pineal cyst measuring 1cm" sorry can't remember all the parts of the brain it was saying it was all too much to memorize! As for the pineal cyst they are usually common findings and almost always less then 0.5cm and asymptomatic but his is 1cm and symptomatic (they are figuring because of it's size it's the cause of his head aches) it could also be the cause of some of his other problems and we've also been told if it continues to grow it can start to cause obstructive hydrocephalus at 1.5cm. Needless to say it's been a lot to take in and we are still trying to absorb it all, we are in shock still, NOTHING can prepare you to hear/read all of this!

Otherwise we did have a great day on Sunday, we went on the Easter Seals cruise with Nicholas and Joey (Matthew stayed with the IL's) and we all had a blast. It was also Joey's 10th birthday, how time flies...I feel old now, so we did a bunch of other things too but the cruise was the highlight of everyones day. Nicholas really enjoyed it even though we didn't think he would because of his phobia of water but he fell in love with boating and the couple that took us out. Joey on the other hand had a few points where he lost it and freaked out, as soon as the wind hit the sails and tipped the boat sideways he freaked out but each freak out only lasted a few minutes and them he would calm down and get right back into it. He also got to steer the boat and was very excited to do this and got to help put the sails out and other things that needed to be done. It was a really good day and for once it didn't rain on us lol which was a shock since lately every time we go out with them it starts pooring!

Hope you all had a wonderful summer...sadly it's quickly coming to an end!

-Liz