Sorry -- this will be another long written post. But for those of you who have followed my blog and know about the concerns with Bennett's growth, we have more to report.
In January, we went to the endocrinologist for his 6 month check. She had one last nagging thought she wanted us to look into. She was wondering whether or not Bennett had Noonan's syndrome. So, off we went to the geneticist.
Our appointment was 2 1/2 hours and included photos, an EKG, and a visit with the cardiologist.
I'll start at the beginning. So, Noonan's syndrome is the most common genetic problem out there. It causes a variety of "characteristics". The doctor began by doing a variety of measurements on Benentt--space between his eyes, the tilt of his ears, the length of his hands, etc. She listened to his heart and detected a very slight murmur. The cardiologist was right down the hall, so she came in to listen. Had they not been trying to make a diagnosis, she said she probably wouln't have even mentioned it because it's so slight. But one of the characteristics of Noonan's is a thickening of the heart muscle, which prompted the EKG. Everything came back normal. Some of the characteristics he has are: short stature, bowed chest with slight indentation at the breatbone, low hair line, along with a few other features. It wasn't enough to make a positive diagnosis, so she asked Ryan and Landon to come in.
After looking at all three of them, she said if she could take pieces from all of them, she would have a perfect case. But individually, none of them are convincing. Our next step, should we choose to take it, would be to do the genetic testing. If that came back positive, insurance would then cover the cost of daily growth hormone shots. Either way, there is no cure for Noonan's syndrome. The doctors just need to keep a closer watch on his heart and kidney function, as those are the most serious complications with this syndrome. We're not sure we want to give him daily shots until puberty to only add 3-4 inches of height.
The plan as of right now is that they will put in his chart a possibility of Noonan's so we can keep an eye on his heart and kidneys. Next year, we will see the endocrinologist again to do a growth plate x-ray to see if he is developmentally on track or will be a late bloomer. We will go back with both boys in two years to the geneticist for her to keep tabs on them. And until then, we enjoy our sweet little peanut!
Boy, I am one lucky mom! Although the boys were completely uncooperative the day we went to get their pictures taken (the first time I've done Christmas photos), we got a few that truly captures their personalities! They are such good buddies!
In this photo, they are reading the book that Grandma used to read to Uncle Greg.
Recently, Kelly gave me a book called The Noticer by Andy Andrews--awesome read!!! It's all about looking at negative situations from a different perspective. At the back of the book, the last page listed other books by the same author. I saw this one--The Young Traveler's Gift--Seven Decisions That Determine Personal Success. Even though it is a work of fiction, the messages in it are very powerful. The book begins with a man who is having a terrible time in life--just lost his job (hmm. . . sound familiar??), his daughter needs surgery and he can't afford it, and his family is quickly running out of money. One night when he's feeling particularly awful, he drives his car into a tree and that's when the adventure begins. He meets seven historical figures who each give him an important message. I won't say too much, but my favorite one was his conversation with Abraham Lincoln. The man is asking him how he deals with people who disagree with his decisions. Lincoln talks about how he used to sit around and be angry because people wronged him. But he came to the conclusion that those people don't sit around and think about how they wronged him and won't ask him for forgiveness. How true!! But Lincoln states that it is important to have a forgiving spirit. People won't ask for forgiveness, but it is necessary to forgive them anyway. And even more so, it is essential to forgive yourself! I had one other favorite, but I don't want to give it away--it is a must read! The seven decisions are easy to apply and really get you to think. I highly recommend this to anyone! Have you read anything good lately you'd like to share??
On Tuesday, we headed to Daddy's basketball game. As it turned out, Dick Bennett, the Badgers former coach, was going to be there to check out a few players. After the game, Aunt Kelly flagged him down and we got our pictures taken with him. He was a factor in how Bennett got his name. I knew another little boy named Bennett and had brought the name up to Ryan. He wasn't sure he liked it. But I told him to think of it like Dick Bennett--well, we did end up with Bennett for a name and now we've had a chance to meet the man in person!
But Bennett was having a blast in the kid's area!
He was going down the slide on his tummy and having a great time! This was a great place to go with small kids--I can definitely see a trip back there in the future!
The teachers started calling kids' names and Bennett walked right over to his group and didn't look back. He sat nicely with his group and teachers while some of the rules were discussed. At first, he sat on the side of the pool and wouldn't get in further. At one point, we came over to where I was being "that" mom and video taping the whole thing. I walked him back to his group and he got right back to it. He really seemed to have fun kicking in the water and wasn't shy at all to be around the other kids in his groups. But best of all, when he got out of the water and walked back to Daddy and Landon, he told me, "I all wet." Yep, buddy, that's what happens when you go swimming!! We asked if he had fun and he said yes with a big smile on his face. We look forward to next week!!
