My First May Mom Meetup

Last night I had the pleasure of meeting Steph. I was excited and nervous to meet someone that I knew online but had never met in person.

I met Steph on Babycenter since our boys are both born in May 2006. In reading her blog, I saw someone on her blog list that I also knew. This was unusual since I am located in South Carolina and I believe she was living in Illinois at the time. We emailed and realized that we both worked in the insurance industry. Her territory included NC and SC but my agency did not have her company.

We decided to meet at a really neat restaurant in downtown Columbia, California Dreaming, that is located in an old train station. When I got there, Steph was already waiting. We introduced ourselves and went back to a table for dinner. As soon as we sat down at the table, we started talking and didn't stop until our food came. We continued talking after dinner and the restaurant started to clear out. We decided to go to the bar area and continue our conversation. I felt like I was meeting with a long lost friend.

Steph was sweet, funny, and very down to earth. We have a lot in common and talked about everything from our boys to husbands to baby girls to insurance. Since she is due with a baby girl in May (and she looked adorable with her baby bump), we talked about going from one kid to two and the changes that come with that.

We talked for almost 5 hours and I think we could have talked for 5 more. The time flew by and I had a great time. It was also really nice to be able to have a meal that wasn't interrupted by someone needing a drink or wanting to eat my food! It was fun to meet Steph and we plan to get together again when she is back in the Columbia area for business. What wonderful things the internet can make possible!

And of course, the night wouldn't be complete without a photo of the two of us.

Wordless Wednesday

Genetic Testing

Todd had been diagnosed with Marfan syndrome in his childhood by one of his doctors. 30 years ago, the life expectancy for a person with Marfan syndrome was somewhere in their 30's. Today, with the proper preventative care and regular monitoring by doctors, a person with Marfan syndrome can live into their 70's.

We knew that we wanted to have genetic testing for Marfan's done on Michael when he was born. First, Todd had to get the testing done as well so that the specific gene mutation could be identified. His results took a little bit longer than expected as the testing was done at Tulane University.

We didn't have any testing done before Michael was born. Because Marfan syndrome affects all genes in the body, there is no way to cure it at this time. We would gain nothing by knowing ahead of time if Michael was positive for the mutation. My doctor took the cord blood after Michael was born and sent that off to Tulane. His sample was compared to Todd's. The diagnosis was completed fairly quick as they knew exactly where to look for the change in the fibrillin gene.

Todd and I found out when Michael was less than 2 weeks old that he was positive for Marfan syndrome. We already suspected that he had it, mainly from looking at him after he was born. He had long fingers and toes. He was only 20 1/4 inches tall but looked long. His limbs were extended almost from the time he was born. The pediatrician who saw Michael in the hospital belonged to the same practice that Todd went to as a child. He remembered seeing Todd a few times in his teen years and knew that Michael was his son and thought that he had Marfan syndrome.

For me, it was a relief to know the diagnosis. That way, we could start to get Michael the treatment that he needed as early as possible. Within his first year of life, he saw the opthalmologist, cardiologist, and a genetic counselor. I guess I just always prepared myself for the worst and assumed that he would test positive for Marfan syndrome. I tend to be a bit of a pessimist at times but hoped I would be wrong in this case. Either way, I knew that Todd and I would be able to handle the outcome!

Life before kids

Todd and I were friends before we started dating. After we were dating for a while, Todd told me that he had Marfan syndrome. Of course, I had never heard of it before and he explained to me what it was. Maybe because I didn't know anything about it or maybe just because I was young, I didn't realize how serious it could be.

A few months after meeting Todd, he had to have back surgery to remove the rod in his back. Only later did we talk in depth about this surgery and I found out the risks that were associated with this surgery, even though they were less than the first surgery.

A year later, Todd had a detached retina and had to have emergency surgery. This was my first experience with actually seeing him affected by something that was a direct result of Marfan syndrome. I didn't really know how to act but just gave him time to heal.

Since I have known Todd, the adverse effects of Marfan syndrome have not really manifested themselves in him. I know that this could change at any moment and was definitely not the case while he was growing up and in his early 20's.

When we were thinking about having kids, we went to see a genetic counselor. By this time, I knew much more about Marfan syndrome than I did when I first met Todd. We didn't really learn anything from the genetic counselor that we didn't already know. It would be a 50/50 chance that any child we had could have Marfan syndrome. If we had a child without Marfan syndrome, we could stop from passing it on if we didn't have any more children.

Some people have told me that I was brave to marry Todd and have children with him knowing the potential outcome. I never even gave it a second thought. The way that I see it, we already knew that there was a 50/50 chance that our child could have Marfan syndrome. I was already prepared for the possibility. Anyone could have a child that had a physical or mental disability and not be expecting it at all.

Finding the person that you want to spend your life with is worth any hardships that you may have to overcome!

One more month....

until Katie turns 1 year old! I know I always say this but I really don't have any idea where the time has gone. I have started planning for her party and can't wait to make the cake. It's one of my favorite things to do for the kids' birthdays.

This past month brought even more changes for Katie. She can now kiss you back when you kiss her but she doesn't know how to give a closed mouth kiss. She has just started clapping for herself and Michael when he does funny stuff. Katie is determined when she wants to do something and doesn't let anyone get in her way. If you move her away, she just goes right back for more.

Katie now has 6 teeth and is eating everything in sight. That includes puzzle pieces, doorstops and Starburst candy. Yes, I did say Starburst candy. Todd went to pick Katie up yesterday and he thought she had something in her mouth. He put his finger in her mouth and didn't feel anything. But then he smelled strawberry and found the candy. Guess we know what she likes. It was around this time that Michael ate his first Oreo and he now says that chocolate is his favorite.



Bathtime has become extra fun for Katie now. She used to lay down in the tub and kick her legs all around. She now realizes that if she rolls over, she can get herself up in the tub. It makes for a challenging bathtime, for sure.

No walking yet here so we are safe for a little while longer....just kidding! She is getting braver and cruises around the whole house. Katie is quite controlled when she wants to get down on the floor. She actually lowers herself down and uses her hand so she doesn't fall. Over the past few days, she has started to let go and try to stand up by herself. She is successful for about 5 seconds and then plops down on her diaper padded butt.

It's been a real joy to have Katie with us and to experience all of her firsts with her. Looking forward to her birthday next month as I can't wait to see her dig into the cake and ice cream (don't tell but she already had her first taste of ice cream and opened her mouth wider than I have ever seen).

Valentine's Day

What could be better than a day that started with this



and ended with this?



Oh, wait, a day that also included filets, lobster tail, mushrooms and crash hot potatoes for dinner. (Sorry there is no picture because we ate it so fast!)

Southern Snow

One inch of snow to someone who lives in South Carolina would be equal to at least a foot of snow to someone who lives in New Jersey. So imagine how we felt when it started to snow around 4:00 Friday afternoon and was still snowing at midnight?



When I went outside shortly after 10:00pm, we had 5 inches in the front yard and the street was covered with a few inches too.



We spent some time outside yesterday afternoon building a snowman with our next-door neighbors and their little boy. The snowball was equal parts grass and equal parts snow. The boys had a great time rolling the snowballs and then the dads took over. The end result was a pretty decent size snowman.





This morning we headed back outside. Michael didn't want to wear the winter gear to go back outside. He went out for a brief amount of time and we made snow angels in the front yard.



I brought him back inside and brought Katie out for a few minutes. I put her down in the snow and she didn't like it at all. Once I got her sitting up, she crawled out of the snow to the porch and started to play with the snow. I think she may have liked the snow better than Michael today.





Of course, the sun was out today and most of it was melted by mid-afternoon. Just the kind of snow I like, the kind that is here just long enough for the kids to play in and then it melts away!

Making Valentines

Tomorrow Michael is having his Valentine's Day party at preschool. So this afternoon, we made the Valentines for his friends. We used Spiderman hologram valentines and heart shaped lollipops.

His teachers requested that we should not address the valentines so that the kids can pass them out to the other kids. I thought this was a bit strange as the To: line was blank but I could see how it would be easier with 17 kids. I filled out Michael's name and then he "signed" each one with a circle. He then taped a heart-shaped lollipop to each valentine.

He is so excited to take them to school tomorrow to give them to his friends. I asked him about the party at school and he let me know he couldn't wait to share his valentines with his friends. I am sure that the party will be a huge success this year, as this is the first time he has really shown interest in giving and receiving valentines!

Signing the valentines:



Katie watching Michael:



The finished product

Circus Time

Yesterday we headed to a local circus for the afternoon show. Michael and Katie have never been to a circus before. We went with a friend and her 2 girls, who had also never been to a circus.

When we got there, we sat at one end of the arena as most of the seats on the side were already taken. This provided us with an excellent vantage point to see everything in one part of the arena but it wasn't as good to see things at the other end.

The show lasted 2 hours, which included a 30 minute intermission halfway through. It held Michael's attention for most of the time and Katie sat through 90% of it, completely content until the clown got shot out of the cannon!

They had tigers that were in a cage and they jumped over other tigers, through hoops and could stand upright on their hind legs. There was also a family of acrobats, who did all sorts of tricks, aerial gymnasts, a juggler and a couple who did illusions with changing outfits. Dogs also did jumping tricks and one larger dog carried a smaller dog on its back and jumped. It was quite entertaining!

After the show was over, I asked Michael what his favorite part was and he said the elephants. The elephants were the last act that came on. They stood on their hind legs, rolled on the floor, jumped over other elephants and walked on a ring. It definitely left an impression on Michael.



And what circus wouldn't be complete without refreshments? The girls and Michael each had their own snowcone and they all shared a bag of popcorn. A great way to give your kid some energy in my opinion!



Here's what Katie thought of the circus:

February is for Hearts

Typically, when people think of February, they think of Valentine's Day. When they think of Valentine's Day, they think of hearts. So I guess it's no coincidence that February is National Marfan Awareness Month.

Marfan syndrome is a connective tissue disorder that affects the body in many different ways. The three main areas of the body that can be affected by Marfan syndrome are the heart, eyes and skeletal system. It is a genetic disorder than has a 50% chance of being passed down from the parent to the child.

Todd was diagnosed with Marfan syndrome as a child. Both Katie and Michael also have it. This is the reason that we have to go to so many doctor's appointments. Knowing that you have Marfan's and being monitored by physicians is the best way to stay on top of the disorder.

Since I don't have Marfan's, this entire process has been a learning experience for me. And I continue to learn more about it each day as Todd, Michael and Katie face new challenges. I have never blogged about Marfan's before because I wasn't really sure that it was my story to tell. As Todd pointed out, our children have Marfan's, which makes it my story as well. So I hope to be able to blog about doctor's appointments, developments in research and things that occur in Todd, Michael and Katie's lives that pertain to Marfan's syndrome. It will also give me a record to look back on as to when certain aspects of the disorder manifested themselves.

Throughout the month of February, I will blog about when Michael and Katie were diagnosed with Marfan's, as well as what they have already went through relating to Marfan syndrome. Marfan syndrome does not define who they are but it is definitely a part of their everyday lives.

Here Comes Another One

Another tooth, that is! Katie got her first tooth just a few days before she turned 9 months old. Since then, she has gotten 5 more. I just saw the 6th one breaking through this morning. That makes 6 teeth in 1.5 months. I think that Michael had 8 teeth by his first birthday. The only two Katie is missing on the lateral incisors on the bottom.

It's funny to think that I was worried that she didn't have any teeth just 2 months ago. It certainly didn't stop her from eating anything that she wanted to. And now that she has the teeth, she thinks she can eat even more. A few weeks back, she tried to eat a taco right out of my hand. When it's time to eat, I break up the food into little pieces and put it on her tray. She shoves as many as she can into her mouth without choking but then can't figure out how to chew them. It's pretty funny to watch but a little scary at the same time.

I keep trying to get a picture of her little teeth but she does not want to cooperate at all. I think I may have to resort to getting Michael to make her laugh and snap a picture when she is not expecting it. Katie really doesn't like to pose for the camera for some strange reason. Probably because she knows I want her to. I will keep trying to get the elusive tooth shot and post it if I do!