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:)
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