One year ago......

One year ago today was the worst day of our lives.  It was the horrible day that we received the news that Anna has Tuberous Sclerosis.  At that time we had never even heard of this disease that now is a part of our everyday life.  We have spent this past year learning as much as we possibly can about Tuberous Sclerosis.  We have been to millions of doctors appointments, enrolled Anna in a clinical trial at Boston Children's Hospital, and asked doctors who specialize in this disorder hundreds of questions.  I remember first learning of the diagnosis and learning that Anna may never crawl, walk, talk, and had a 60% chance of being autistic. She could have renal failure, lung failure, severe skin manifestations, or even a brain tumor that causes death. It was all so overwhelming to say the least. 

Overall, we have had the best year we could have hoped for.  She had one horrible grand mal seizure in December, but aside from that she has been completely seizure free.  In this past year Anna has learned to crawl, stand, walk, she understands everything we say and has a repertoire of 10 or so words.  She does not display any signs of being autistic.  She is completely on track developmentally and we are so very proud of her.  She is a happy little girl who loves to read books, play with her big sister, dress up as a princess, and of course eat! 

These days my tears are shed more often because I feel oh so lucky that Anna is doing so great developmentally and not because I can't accept the fact that she has Tuberous Sclerosis.  We know how lucky we are that she is doing so well.  There are many other children who suffer uncontrollable seizures - even hundreds per day.  Some of these children have had multiple brain surgeries to no avail.  We are so very thankful that she is on track developmentally and doing as well as she is.  We are also very acutely aware that this could all change in a heartbeat.  Seizures could return at any time for her and she faces a big challenge coming in May when she will start weaning from her current medication due to potential side effects.  For now, we continue to take it one day at a time.  And I try as best as I can to not worry about what the future will hold for Anna and her health.

Our annual walkathon to raise money for the Tuberous Sclerosis Alliance is June 16th in Washington DC.  We are walking because it is the only thing that we can do to help Anna fight this disease. This cause is so near and dear to our hearts and we want to raise as much money as possible for continued education and research regarding Tuberous Sclerosis. Thank you to all who have given us so much love and support this past year. And thank you for any contributions made. We also welcome any family and friends who want to come and walk with us. We would love to have you by our side!
I urge our friends and family to visit my fundraising page at the following link:
http://my.e2rm.com/personalPage.aspx?registrationID=1418722&langPref=en-CA

Emma's Last Gymnastics Class

I wanted to post a few quick videos and pictures of Emma's last gymnastics class and I am in shock right now because blogger (the website that I use for this blog) has updated their program and my life just got a whole lot EASIER!  Does that really ever happen when technology is involved?!?  I used to have to do my posts backwards - so that I uploaded the pictures and videos at the very bottom first, but now I can do it in the normal order AND upload more than 2 or three images at a time (which is AWESOME and will save tons of time!!).  Sorry, I got a little excited there! 

Anyway, we have had Emma in gymnastics since last August and decided it was time for a break - especially since she will be doing more swimming classes coming up soon.  Parents were allowed in this last class to take pictures and I wanted to post a few of my little gymnast.

This video doesn't show much except the fact that she loves her sister:)  Emma stopped doing her little obstacle course to come and give Anna a kiss (she was sitting on the ground at my feet.)  Definitely made momma's heart go pitter patter:)

A few pictures of Anna - wish she would have given me a smile in this one.  I love how fluffy her hair looks.

 Anna playing with her new Easter craft.  She loved it!

Videos

I had a couple videos from Easter that I still needed to post. The first one is a parade by Emma, Anna, Kole, and Sydney in their new dress up clothes that Nana and Papa brought them for Easter. Can you tell that Emma loves to dress up as a princess?


The next video is a cute one of Kole and Emma trying to go down the slide together.

Space Shuttle Discovery

The Space Shuttle Discovery took its final flight today into Dulles airport near our house and I did not want to miss it! I knew it would be a once in a lifetime experience to see a space shuttle flying on the back of a 747 and I was not disappointed!

I packed the girls up early so that I was at the Udvar Hazy Air and Space Museum at 8:00am right when the parking lot opened. This is the museum where the Discovery will take the place of the Space Shuttle Enterprise, which hasn't actually been into space. The place was packed right at 8:00 and the lot closed due to being full by 9:00. I had plans to meet 3 friends with their kids and have a big breakfast tailgate but they all got stuck in stopped traffic and didn't make it in time:(

The girls and I had a great time though! Discovery flew over for the first time around 10am and then it took a trip into DC to fly over the monuments. It made its way back for a second viewing at 11am. I knew it was landing at Dulles airport, which is right next door to the museum, but I wasn't sure if we would be able to see it land. So, after 2 sightings (that were oh-so-close and unbelievable!) I decided to throw the kids in the car and try to make mad timing for the exit of the museum since I knew there would be hours of wait time to get out if we lolly gagged. Anyway, we were about the 20th car in line to leave and a police car stopped all traffic and wouldn't let anyone leave. I was very annoyed at first but then quickly realized that we couldn't leave because the Discovery was landing on a runway right in front of us!!! It was my lucky day to have such a close viewing of the landing (which the other people still waiting in the parking lot couldn't see) AND then be one of the first in line to leave. We had a great time and I really hope that Emma will remember what an awesome sight it was!

Wondering how these people at the top of the watch tower at the Air and Space Museum got their terrific seats?!?

Girls happily watching their DVD player while waiting

Pictures that I took on my 3 different sightings

This picture isn't the best, but we could actually see the dust being kicked up from its landing!

Video of it flying right over us and landing. You can hear Anna screeching in the background:)

Happy Easter

We had Uncle Seth, Aunt Jenny, Kole and Sydney, as well as Nana and Papa in town visiting over Easter. It was the first time that Seth and Jenny have come to visit us and it was a ton of fun. The girls had a great time playing with their cousins and we were so busy during their visit. The first night we played outside and the kids enjoyed the slide and some baseball.

Sydney having fun on the slide

Anna loves the slide, too!

Kole practicing his perfect stance

Nice form, Emma!

Peek - A - Boo

The next morning we went to our local Udvar Hazy Air and Space Museum. As always my favorite part was th Space Shuttle Enterprise, which is just amazingly huge!

Kole and Emma with their airplane wings

Our three princesses

Nana and Papa with the grandkids all dressed up

Friday brought us into Washington DC to the Smithsonian Museum of Natural History. The kids all loved the animals and dinosaurs. They weren't too excited to take this picture in front of the Washington Monument. Not one of them would look at me:)

Kole was enthralled with the huge elephant that greeted us at the entrance.

A family picture....those sure are few and far between!!

Isn't this picture so sweet?!? Anna loved looking at all of the animals. She sure has changed from the last time we visited when she really didn't care much about looking at anything.

Kole and Emma held hands with each other all weekend long. So adorable as we know it won't last forever!

Hope Diamond. This is on my Christmas list this year:)

Sweet Anna and Sydney were tired out from our long day in D.C.

Preparing to dye the Easter eggs

Time for the egg hunt. Anna loved it - this picture is so sweet to me as she has a huge smile on her face stuffing an egg into her basket.

Go, Anna, go! Emma was so fast that the only pictures I got of her were with her butt in the air picking up eggs!

Kids going through their loot.

Nana coloring with Anna

Kids posing in their new outfits made by Nana. Whew - this was the best I could get out of probably 100 pictures!

Sydney posing with her bonnet and boa from Nana. My pictures of the other girls in their bonnets were all horrible, they were so "over" pictures by that point of the day. All of the Easter festivities wore the kids right out!

Bunny cake that I made for the kids. Turned out really cute.

We also carried on a tradition started by my Grandma Peggy - the Easter egg fight. After dyeing the eggs each person got to pick one egg and we "fought" each other one on one until the last person remained without a cracked egg. The finalists were Nana and Anna. It was so appropriate that our very own hard headed fighter Anna was the champion and has bragging rights as Easter egg fighting champion for the year. It was also very appropriate that our little sensitive daughter Emma cried the minute that her egg got a crack in it:) That was so much fun!

After their cousins left, Emma and Anna had fun playing with some of their Easter gifts. Great Nana got them a bubble machine and the girls loved it!

Monday brought us to Mount Vernon with Nana and Papa. This is the home of George Washington.

Girls posing with Nana and Papa in the gardens.

One of my favorite pictures! I caught Sydney playing all by herself with Emma's princesses. She took each one individually and looked at it and played with it and then moved on to the next one. So adorable to see such a little girl enthralled with the princess dolls already:)

Whew! We had a fun-filled, action packed week! The girls were exhausted after everyone left, but they had so much fun playing with their cousins and Nana and Papa. I have a few videos from the week too, but those will have to come in a later post!