We have been busy as usual. We find so many fun things to do where we live and frankly have a hard time picking which we want to do vs. which we don't have time to do. Two weeks ago we took a 45 minute drive west towards the gorgeous mountains to go to Great Country Farms. It is a fun, child friendly place with kid activities, fishing, and an apple orchard. The girls had a blast on the large bounce area. Anna had a hard time even standing up:
There were lots of animals to see and feed. The girls both loved feeding the goats.
We then went to the orchard and picked apples. Emma LOVED picking the apples. Anna LOVED eating the apples.
Emma picks apples
Anna eats apple
Emma picks more apples
Anna keeps eating
Emma picks
Anna eats
Jay took the girls fishing. Anna had no interest. She just kept eating her apples:) Emma loved it and she even caught her very first fish. It was a whopper too!
Anna has officially been weaned from all of her medicine!!! She has been off the meds for over a week and knock on wood she is doing AWESOME! Here is a picture of her taking her last dose.
Here is a picture from the time when she began taking the medicine at 7 months old. Time has really flown but look at how much bigger and older she is. She has changed so much! Look how much hair she has!!
We went to Boston this past weekend for three days in order for Anna to undergo her two year testing. They did developmental testing on two different days and she rocked her tests! She scored average on receptive speech (words she understands), expressive vocabulary (words she says), fine motor coordination, and visual reception. She has over 20 brain tumors and is scoring AVERAGE amongst her healthy peers on her testing!!! We are so very excited and ecstatic to receive such great news. (Who knew that you could be so happy to have your child be simply "average"??) She is also completely off the autism spectrum now. The testers were very impressed with how far her speech has come in the last 6 months. She is talking so much more now and so very interested in speech in general - babbling a ton and trying to repeat everything you say compared to 6 months ago. We are so very blessed with this news.
Reading a little Fancy Nancy on the airplane
We did a few fun sight seeing things while we were in Boston as well. Jay and I love, love, love the town. There is so much to see and do and the restaurants are awesome. We took the girls to the park that the popular childrens book "Make Way for Ducklings" is based off. We even found the duck statues and the girls thought it was so fun to ride them like a horse. They are so silly.
Trying to both fit on momma duck. It wasn't working out so well.
We went on a fun duck boat tour on land/water. Emma even got to drive!
Girls love the subway train. Anna says "choo choo" over and over.
A couple silly videos of the girls killing time at the airport.
Girls dancing at Faneuil Hall. I know I post a million videos of them dancing but I just think they are so darn cute busting out their moves.
Anna's finger is finally getting better. She has shed a ton of skin and lost her fingernail. The finger looks great now and we just have to wait for the nail to grow back. Thank goodness! The hand surgeon also told us how lucky we were that she didn't have to have part of her finger amputated. Anna also recently went to her 2year well check. She weighs 32lb 2oz which is in the 95th percentile and is 35 inches tall which is the 75th percentile. Hope everyone has a good week:)
Emma had her first week of dance this week. She is taking both tap and ballet. She decided that she wanted to try this instead of gymnastics this year. She loved the class and told me that she really loves all of them: tap, ballet, and gymnastics. She doesn't have a favorite. I took this quick picture of her with my phone before we left.
In true Anna fashion, she demanded to have her picture taken right after I took Emma's. The girl wants to do everything her big sister does. I told her to smile for the camera and this is what I got! She is such a character! She laughed and laughed when she saw the picture on my phone.
Here are a few gorgeous pictures of the girls that my friend Jenn from Peanut Butter and Jenny Photography took. She is an amazing photographer!
Jay is back from another trip (although this was his personal Vegas trip). We are oh so happy to have him home after traveling 5 different weeks out of the last 6 or 7. The girls missed their daddy! Have a great weekend!
I have returned to blogging after a long absence! I don't have any real excuses as to why I haven't posted in so long except that I just plain haven't felt like it. A lot has happened in the last month and a half and I am sure I will leave half of the details out, but I will give the big picture of what we have been up to. First and foremost, Anna celebrated her second birthday! Her birthday was on a Monday, and since Jay had to work that day we had planned to do something fun on the day before. We wanted to go to a fun local waterpark, but rain dampered our plans (for the second year in a row for poor Anna!!). Instead we went to a local park that has a fun train and went for a train ride, carousel ride, and went out for lunch.
Anna celebrated her birthday with a Minnie Mouse theme. We went with friends to a local farm and saw some farm animals, rode another carousel, and planned a picnic lunch. It was so hot and humid outside that we all packed up and came to our house for a picnic lunch on our living room floor:) When Jay got home from work we ate dinner and the Minnie Mouse cupcakes that I made and opened presents. It was a fun day for Anna and she had a great birthday!
Special treat that Anna found at the table for breakfast:)
Minnie's bows were WAY harder to make than I had ever imagined! This girl needs some fondant lessons - but they still turned out cute.
Emma made friends with a goat at the farm
Sisterly love
Hey everybody! Today is my birthday!!!
Anna had no problems eating the entire cupcake!
One lucky girl with all of those gifts!
Safe to say that she loved her new Lemon Meringue doll.
We have some very good news and some very, very bad news regarding Anna's health updates. The good news is that we only have one week to go with weaning her from her current seizure medications and she is doing awesome! We haven't had any seizures and we keep praying everyday that things will remain the same even though the odds are against us. Developmentally she continues to be on track and still has speech therapy once a week in which she continues to learn new words all the time. The bad news is that after a long wait after receiving her kidney ultrasound in May we were finally able to see the pediatric nephrologist (kidney specialist) who confirmed our worst fear that she does have polycystic kidney disease (PKD). About 2% of people with Tuberous Sclerosis also have PKD because the gene that codes for PKD lies on the same chromosome right next to the ones causing TSC. Currently this doesn't mean that things are much different for us. We knew that Anna would have to have yearly kidney ultrasounds, which she will continue to have, along with blood tests and urinalysis to test the function of her kidneys. She will get more cysts in her kidneys, but they may never interfere with the function of them. She might not ever have any significant problems with her kidneys. Things could also be much worse in the future where the cysts do interfere with kidney function, which could potentially mean kidney failure, dialysis, transplant, etc.
We were, of course, devastated to hear this. The poor girl doesn't need any other medical challenges. We have, however, chosen to be positive about it. We aren't going to worry about the "what ifs". She might not ever have kidney problems. If she does have significant problems in the future, it would be horrible, yes. But she can live with one kidney. She can receive a kidney transplant, which happen all the time, and continue on to live a normal life. There are treatments to help this. In the meantime, we have chosen to live life fully in the present day. Enjoy every awesome seizure free day we are given, because those are truly a gift from God. How can you not look at this gorgeous face and think we aren't truly blessed despite all the medical battles she faces???
In the past month we have also gone into DC to visit Arlington National Cemetery again, where I caught these two cute pics of the girls.
I also finally saw Iwo Jima Memorial for the first time
Random pictures of the girls. They sure love to be together!
Could we have two more girlie girls?? They LOVE to dress up!
Watching a movie on the DVD player together
Emma had her first day of preschool last week. She goes three days a week this year and was beyond excited to start. She keeps asking me when she will get to go to school five days a week like the big kids. This momma can't believe that next year she will be in kindergarten! Emma loves school and has no issues saying goodbye to me. In fact she was comforting me this year. I told her I was going to miss her and she said "Don't worry mom. I will be home soon." Thinking next year I will be a wreck! Needless to say she did great, but poor little Anna cried when we left the school. She didn't want to leave her sister:(
Emma's first day of preschool
Few more pictures to prove the girls are always playing together. I have a feeling they will be the sisters that hate each other right around middle school but grow up to be best friends. It warms my heart to see them always wanting to play together.
OMG! (See the picture below) Most of you already know this story about sweet Anna's finger, but I just couldn't leave it out. Earlier this week I went out for a girls dinner and Jay had to put the girls to bed. When I got home Anna was in her crib crying for mommy. (Jay didn't know how long she had been crying because he was outside visiting with the neighbor.) Since it is so unlike her to cry at night I went in to comfort her. I left the light out so it wouldn't be so bright for her and rocked with her. She gave me a big hug and calmed down. I put her back to bed and she cried another 15 min and went to bed. When I got her up in the morning I noticed right away that her pointer finger was completely BLACK from the knuckle down! She had a ponytail holder wrapped around her finger that had completely cut off her circulation!! Jay had put her to bed with her ponytail in, and she somehow managed to get it around her finger:( I didn't see it when I checked on her because I left the light out!
I took it off and within 10 seconds her entire finger turned pink so I thought it would be fine. It was swollen throughout the entire day, which I expected, but late that night thick layers of skin began sloughing off. It also started really oozing and I decided to call the pediatrician. Well, he scared the daylights out of me and went on and on about how her finger could still die and it might have to be amputated!!! He kept trying to get in touch with a hand surgeon, which didn't happen until 9pm that night and in the meantime he made me an appt. to see a pediatric orthopedic surgeon, who has worked on hands before. We went to see her and she seemed to think that her finger would be just fine (thank heaven for small miracles!!). It is gross looking and she said it will get worse before better and that most of the skin will fall off, but that it will heal. She doesn't have much sensation in it, which is actually a good thing because it isn't hurting her, but we aren't sure if it will all come back or not. Guess she will be fine as long as it doesn't have to be amputated!
#nothingablueberrymuffinbandaidwontfix
We finally made it to the videos! Here is Anna just playing around - dancing and singing into her microphone.
Both girls dancing at a local children's concert
Next two are of Emma swimming......finally!! It really took her a while for it to click and now she is finally swimming on her own. Just in the last month she has made tremendous strides. I would say she is even much better than these videos. Last weekend she jumped off the diving board and then swam the whole length of the pool on her own. This momma is just happy to have at least one kid who can swim on their own!
Anna opening a present
Whew! I know I left a lot out - like a trip to Michigan over Labor Day where Jay and I are the proud new God Parents to our best friends baby Kyla Jane! It was a quick weekend, but tons of fun! I will try to post sooner next time:)
