Merry Christmas from the Nation's Capital!

Jay and I received the best Christmas present ever today! We took Anna to the developmental specialist, who we visit every 6 months at this point, and Anna received rave reviews on all of her development! The doctor was especially pleased with Anna's communication and social interaction, which is what we had the most doubts about. She said that it is extremely good to see Anna not only imitating us, but also conversing with us in her own words. It doesn't matter at this point that she isn't speaking actual words, but she is communicating in her own way by pointing, babbling, and making sure to get our attention when she needs to. There were just a couple of tests where Anna ranks more in the 12-15 month development age than the 15 month age that she actually is, which didn't concern the doctor at all. She also commented that Anna shows absolutely no signs of an autism spectrum disorder, which she would expect to see at this stage if she were to have autism. Yay for our little fighter! She is doing so good and we like to celebrate every piece of good news we receive regarding her development!

We LOVE living in Virginia and love being so close to the nation's capital. It has so much to offer and this past weekend we decided that we needed to take the girls to Washington D.C. to see both the national tree in front of the White House, but also the tree in front of the Capitol Building. It was cold out, but the girls had a great time. Emma loved all the lights and had a great time, as did the rest of us! Enjoy the pictures.

Emma was super excited to be in front of the Capitol Building tree. It was much more beautiful than the White House tree. It was brought in from California and was 118 years old!

Can you spot the girls in front of the tree?

LOVE the Capitol Building in the background - this tree was truly magnificent!!

Girls in front of the White House tree

This tree in front of the White House was less than magnificent. Apparently the tree always used was brought down last year in the horrible ice storm that Washington D.C. had.

It did have tons of train tracks around the bottom that Emma loved.

The National tree is also surrounded by 50 trees, one for each state. This was the Michigan tree - I took a picture for all of our peeps back home!

Emma had a GREAT time!!

Hope everyone has a very happy and safe holidays!!

Emma's Christmas Pageant AND Anna Walking:)

I have two cute videos to post! The first one is Anna walking - she is doing so good! Emma is behind me teasing her by shaking her toys.

The second video is of Emma at her Christmas Pageant at school. They performed 3 verses of Twinkle Twinkle Little Star complete with sign language. Please excuse the horrible video, but Anna was on the floor trying to crawl up my legs:)

Oh My Goodness!!

As I was looking at my last post and the picture that I recently took of Emma and Anna under our tree I remembered how different this picture looked one year ago. This is a picture of the girls on Christmas morning last year: And this is the picture that I just took! Oh what changes a year can bring! Looks like Emma is even having a hard time wrapping her arms around Anna's big belly:) Love my two beautiful girls!

Catching Up!!

Can't believe that I haven't posted since Halloween! Where has the time gone? This time of year seems to be so busy with holiday preparations, Christmas decorating, shopping, cooking, and preparing the Thanksgiving feast. We had a great Thanksgiving meal which included Grammy, who flew in from Michigan, my cousin and her husband who live in Washington D.C., and a friend from my playgroup and her husband and daughter. I cooked all of the traditional fixings and we had a yummy meal and a relaxing day. Grammy and I then prepared some shopping lists and headed out for Black Friday at 5am. We were out until dinner time and then went back out again to Target and Kohls after the girls went to bed. We found tons of things for Emma (OMG I could just keep buying for her I have SO many ideas) and nothing for Anna. Seriously, what do you buy a one year old who already has an older sister? I am having a really hard time coming up with ideas for her - how many more plastic toys can this house hold? Just when I thought I was completely done shopping for Emma she keeps saying over and over that all she wants is a Barbie salon. Really? A piece of junk salon where you can actually dip Barbie's hair in the sink and wash it or color it with markers. Let's just say this has not been purchased and we will see how much of a softie Santa really is before Christmas:)

Anna is OH SO CLOSE to walking. Unlike Emma, who started walking exclusively after her 1st step, Anna is warming up to the idea of walking. She takes 8 steps here or 10 steps there. We are noticing her walking a lot more on her own without prompting, but when she wants to really get somewhere fast crawling is still her top pick. Mommy is hoping that she will be walking by Christmas (which will be 2 days shy of her 16 month birthday)! We have had some behind the scenes decision making for her healthcare lately. The opthamologist wanted to perform an ERG and OCT, which are basically tests to more accurately measure the functioning of her retina and overall vision. (Remember - the main side effect of her current meds is peripheral vision loss. Therefore, we have to see the opthamologist every 3 months.) We scheduled these tests, which have to be performed under complete sedation at the hospital (meaning complete sedation with intubation) and Jay and I just kept having second thoughts about it. #1 Why are we putting her through this when we totally feel the benefits of her medicine (complete seizure control) completely outweigh the potential side effects of peripheral vision loss. We would never take her off from her meds even if she did have this peripheral vision loss. #2 The follow up ERG/OCT would be completed when we are going to wean her from her meds (May) which is when they would compare the 1st results with the 2nd to determine any change in vision. Therefore, the first indication of eye problems would be when we are weaning her from the meds anyway. Needless to say, we cancelled the test and told them we would revisit this later if she needed to be on the meds on a more long term basis.

We had a 3 month check up with her neurologist a couple weeks ago. He is extremely pleased with her complete seizure control on such a low dose of meds. She keeps gaining weight and then falling under the minimum recommended dose threshold and still has complete seizure control:) Unfortunately, there are kids out there on 4-5 times the dose that Anna is on and it still isn't controlling their seizures. He also said that he was pleased at how interactive she is and how she points at everything and seems to be asking "What's that?" His exact comment was "For kids with Tuberous Sclerosis, and especially those that have had infantile spasms, she isn't at the top of the curve as far as development, she is at the very tip of the curve." I seriously wanted to jump up and hug him. This was the best news we have heard in a long time - coming from a very conservative doctor who is very careful not to make any future predictions on how she will be affected. We have an appointment with the developmental specialist Dec. 14. We are curious to see if she has the same opinion on Anna's development, specifically how she feels her communication is developing. Right before we left he said that the next thing she should start doing is pointing to things like the nose, ear, mouth when we ask her. She can already do that with our nose:) What a smart little girl!

We have also decided to put Anna in a clinical trial at Boston Children's Hospital. It is entitled "Early Diagnosis of Autism in Children with TSC." Overall, kids with TSC are at a much greater risk of being diagnosed with an autism spectrum disorder. Although Anna does not show any current signs of autism, we decided that the more screening for her the better. She will have extensive neurodevelopmental screening and although she may not show signs of autism we may receive early recommendations for speech therapy or behavior therapy, or a number of other things that early screening can pick up on and early treatment will help. We will travel there 3 different times - at 18 months, 2 years, and 3 years. In the end, we hope that they find nothing wrong with her of course! However, we are so thankful for all of those researchers who have studied this disease long before we ever heard of it, and especially those that developed her miracle medicine that has stopped her seizures. If they don't find anything wrong with her, hopefully we can help their research to find better predictors of which children are more at risk for autism, and down the road give more families the answers that they are so desperately searching for.

Enjoy the pics!

Emma is SO excited for colder weather so she can wear her hat and gloves!

We went to a local zoo where Emma got to feed the goats. They were a bit aggressive!

We also went on a hay ride where the animals came right up to us! It was a bit scary - there were zebra, ostrich, deer, emu, camel, and many more. Here are just a couple pics of how close they were.

Emma playing with a couple neighborhood friends

Girls were seriously so excited to be all bundled up for our walk - love this VA weather!

Emma made this at school: Jay and I were pretty excited to make the list!

We made our 1st gingerbread house. It turned out to be WAY more work than I thought it was going to be. Emma BEGGED for days to do this and I finally gave in.

Video of the girls dancing. This is seriously what I get to watch everyday. They LOVE to dance to the music. I love how they both immediately stop when one song is over and just stare and wait for the next song to come on - how cute!

That's all for now! I can't believe that I not only forgot to take a picture of the turkey this year for Thanksgiving, but I didn't take 1 picture of my mom with the girls while she was here visiting for the week! How horrible. I promise to do better at Christmas! Probably won't post until after Christmas since this time of year is so busy. Hope everyone has a very Merry Christmas.

Happy Halloween!

We had a great Halloween with two beautiful little girls! I also managed to get some great pictures, which is pretty unremarkable in itself! We started the celebration off Sunday night at our friends house for some pumpkin carving and pizza. I only got one picture of this event - and although it looks like Emma was getting involved in the pumpkin carving ordeal, looks can be very deceiving. She is all girly girl and hates to get dirty. This holds true every year when I try to bribe her to clean out the pumpkin. Good thing I had my camera ready because she stuck her hand in one time and when she found out how gooey it was she wanted NO part of carving the pumpkin and left to play. One of these years I will have someone help me with the carving - Jay despises it too:(

Here is a picture of Anna at playgroup. She LOVES when she gets to play on the parachute! She was an adorable pumpkin this year, which was Emma's costume 2 years ago. I love it!!
Crawling through the tunnel at playgroup

Cutest. Pumpkin. Ever.

Emma was Princess Ariel.

They were so excited to be dressed up!!

Daddy with the girls when we headed out. The four of us went trick or treating for about one hour and then Jay headed back with Anna to put her to bed. Emma and I then went to a couple of her friends houses in the neighborhood to see them and we even hit a couple more houses with her friend Hannah. Emma LOVED it, after every single house she would ask "Can we please go to another house, Mommy?"

Eagerly waiting for the first house to open their door

End of the night loot.

Pumpkin that mom had to carve all by herself. I usually go for the traditional smiley face.

Emma never gets on video anymore so I thought I would take a quick video to show how excited she is.

Disney On Ice

Last weekend I took Emma on a date to Disney on Ice and it was OH SO MUCH FUN!! Jay stayed home with Anna (I think he was very happy to do so) since we decided it wouldn't be much fun to keep Anna happy in a seat during the production. I let Emma get dressed up from head to toe in her Ariel costume, tiara, light up wand and light up shoes. This is also her Halloween costume this year as she loves anything and everything to do with Disney Princesses. I have to say that there were lots of cute little girls dressed up there, but Emma was by far the cutest in my eyes:)

She was sooo excited to wear her costume and to see the princesses ice skating. Mickey and Minnie along with Donald and Goofy even made appearances which was icing on the cake for her! There were three story lines that they really played out: The Princess and the Frog, Cinderella, and Tangled. At the very end all the princesses skated out to wave goodbye. Emma was enthralled throughout the entire night and was even a bit disappointed when it was over that she didn't get to see more of Belle and Ariel. She would have gladly watched for another hour or two! Here are just a few pictures from the night. Halloween pictures to come soon!

Our very own princess Emma

Her princess attitude occasionally shines through as well - most often in the form of refusing to smile for the camera!
Does it get any better than watching with a snow cone?

Oh yes it does! A bucket of popcorn all to herself:)

There were amazing characters - here is an alligator from The Princess and the Frog

Cinderella's carriage

Maximus - the horse from Tangled. It looked extremely real - I was amazed at how it skated along so seamlessly!

Rapunzel and Flynn also did acrobatic tricks way up in the air!

Mickey and Minnie at the very end of the show

I had a great time spending some alone time with Emma and can't wait for Anna to get old enough to enjoy these things too! In the meantime I included a video of Anna dancing to some music on TV. The girl loves to dance! Happy Halloween!

Visit from my BFF:)

My best friend, Aimee, and her two boys Ben and Owen visited this past week while Jay was out of town again for work. Aimee and I grew up across the street from each other and have been best friends since the day we met 28 years ago - we were 4 years old!!! We were the maid of honor in each others wedding and it is so exciting to be able to continue to share our lives together throughout the years. Her two boys are so close in age to Emma and Anna (Ben is 6 months younger than Emma and Owen is 3 months younger than Anna) and it is so much fun to see them playing together.

They were here 5 days and the time flew by! I have a million pictures from the visit and I tried to weed through them for the post. I will let the pictures tell the story of the adventures that we had.

The first two pictures are random from Emma's preschool 5K/1mile walkathon to raise money for the school. Jay ran the 5K and Emma and I walked the 1 mile. Emma walked the entire mile (it only took her 22 min:) and Anna enjoyed a ride in the stroller. Geoffrey the Giraffe gave Emma a big kiss on the head, too!

The first day that Aimee and the kids were here we had a lady come to our house to make hand impressions of the four kids. It will take 4-6 weeks for them to be completed as she has to paint them and put them in a kiln multiple times but it will be SO FUN to each have a handprint of our kids to hang on the wall and remember our fun time together. Ben was the first to get it done.

Emma was next

We woke poor Owen from a nap to do this. He wasn't super happy about that:(

Next up - fun time outdoors. The big kids took turns driving the John Deere.

Anna and Owen enjoyed a nice wagon ride

Fun times in the street!!

Only pic of Aimee and I

The next day we went to Cox Farms. It was filled with fun things for the kids to do. There were animals, play equipment, at least 10 different fun slides, and a long hay ride that included aliens running after us, a scary tunnel, and lots of water to ride through. The big kids could have stayed and played ALL DAY, but we both had little ones that got sick of being in the stroller and were ready for their afternoon naps.

Emma's first trip down one of the slides

Ben thinks it is pretty fun too!

Emma loved feeding the goats

Anna was excited about the goats too

Another fun slide

Emma having fun playing inside a wooden train

Next up: decorating Halloween cookies. YUMMY!

Emma's final creation

Ben's final creation

Aimee and I decorated the rest as the kids only were interested in doing 1 cookie!

Owen and Anna had a great time playing together - they are both oh so close to walking!

Tuesday we went to Frying Pan Farm. The kids loved seeing all of the animals and then they played for a while at the playground. There were lots of baby pigs - they were so cute.

Ben and Emma looking for the animals

The goats were all snuggled up

Wednesday brought us to the Smithsonian Air and Space Museum that is only 15 minutes from our house. It is an extension of the Air and Space Museum that is in D.C. as they needed extra room to house all of the airplanes and Space Shuttle. The kids liked it for a short time but lost interest after 30 minutes or so. Aimee and I really liked it and wished we could have read more about all of the planes. We were especially interested in the Lockheed Blackbird that is the world's fastest jet propelled airplane. In its last flight, it flew from LA to Washington DC in 1 hour and 4 minutes reaching speeds over 2100 mph! Everyone has their airplane wings ready to go!

The kids were all scared of this plane that had "shark teeth."

Look how big this fighter jet is compared to Emma!

Front of the Space Shuttle Enterprise. This was the most amazing thing to me in the entire museum. I was blown away at how large the space shuttle was! I always watch as the space shuttles land from their missions in Florida and they look like large airplanes, but there is no comparison to an airplane. All I can say is that it was HUGE!!

We then got to go up in the watch tower. It overlooks Dulles airport and the kids got an awesome view of lots of airplanes landing at the airport. Ben and Emma enjoyed watching this.

By the end of the trip, Aimee and I had watching 4 kids down pat:) Here they all are blissfully playing together on their last morning.

During the week Emma had parents day at gymnastics where we got to take some pictures. Aimee was nice enough to watch Anna that night so that I didn't have to bring her with me.

Emma flipping over the bar

In the midst of a somersault

Aimee and the boys are safe back in Milwaukee and we miss them already! Our visits are too few and far between and always go by too fast. We had an awesome visit and it was so much fun to see the kids interacting! Can't wait to see them again at Christmas:)