We had a great trip to Disney, thanks to our cousins, Leslie and Joel. 

My cousin Leslie is expecting her first child in June, so she got a "first visit" button for the little nugget. 

Claire got to meet so many great characters. She was so stunned to find out that they weren't just cartoon characters on TV. She was speechless. 

Elise staying in the stroller for all the character visits, but still enjoyed herself. 

Nora really bonded with Joel and Leslie. 

We are lunch in the Beast's castle. It was really cool. 

We saw the parade. 

Rode the carousel. 

And of course met Elsa and Ana. 

Cinderella

She was nice enough to pay a visit to Elise in the stroller. 

Rapunzell

Who also greeted Elise in the stroller. 

And Nora conked out after all the princess meetings. 

Our weather has been really great lately, sorry everyone else, so we have had some great afternoons outside. 

Nora is now sitting at the big table with the rest of us. She is pretty proud to be a big girl like her sisters. 

Nora trying out a teeter totter. 

And handling her first ice cream cone by herself. 

We had two days of cold weather this year. Ha!!!

The girls just love the horse farm. 

Claire and Elise are finally out riding their bikes. 

And Claire even ventured out with me on her first neighborhood bike ride. 

And Nora insists on being like her sisters and has been trying to use the potty already!

We went to a birthday party at a fire station last week. 

I finally got Claire to wear her new boots. This was the best picture I got. 

We went to Melbourne fl for a job interview. Had a room with a great view. 

Elise practiced her selfies on the drive there. 

And of course Nora climbed on a table. 

So we finally got all of Elise's biopsy results back. Pathologists from here at UF, Texas children's, and Seattle Childrens looked at the biopsy samples. And instead of finding one thing wrong, they actually found several. The biggest issue being that Elise's lungs have never developed past the neonatal stage. They have grown in size, but have never grown new air sacs and other tissues. The second issue is that the sample showed evidence of old and new bleeding. Now pulmonary hypertension can cause some bleeding, but shouldn't if her pressures are low enough (and they seem to be).  And minor bleeding is ok because the body can handle minor bleeding. But, her samples showed too much bleeding. There are some autoimmune diseases that can cause pulmonary hemorrhaging, and we are planning to draw blood next month and test for these diseases. The other findings of the biopsy were mostly expected. She has pulmonary fibrosis, which is scarring of the interstitial tissue from viral illnesses she has had in the past. Enlargement of her pulmonary vessels, which is a result of her pulmonary hypertension. And chronic bronchitis. 

We knew the results of the biopsy were not going to be good news, but we weren't expecting them to be this bad. The results also confirmed for us that a lung transplant is definitely in her future, and actually closer than we originally thought. 

 We had her on steroids for about 11 months, but stopped them in October because of the side effects. Since stopping the steroids she has become increasingly short of breath and now requires oxygen 24/7. She still goes to school, but has trouble playing a recess due to shortness of breath. We started her on a new med this week hoping it will work similar to steroids without the side effects. The medicine takes about two weeks to start working, so we are keeping or fingers crossed that it works, and we can delay the transplant as long as possible.   

And Jason is doing everything he can to get a job in St. Louis so we can get Elise to St. Louis Childrens where she will eventually have her lung transplant. 

Nora met Santa for the first time this year. She did really good. 

This is as close as Elise and Claire got. They showed him their lists. 

Then we mailed their Christmas lists to Santa. 

This is Nora's "I'm so cute you'll let me play in the dog water, right mom?" Look. 

Leslie and Joel stopped by on their way to Joel's parents to give the girls their gifts. 

Elise LOVES her new legos. 

And Claire got new frozen goodies from her god mommy Samantha. 

This was Nora's first real puddle playtime. She loved it. I had to carry her away crying because she didn't want to stop playing. 

I think the puddle won. 

The girls made their cookies for Santa. 

Christmas morning. 

We had great weather. Perfect for afternoon strolls. 

Nora wants to do everything herself these days. Even walk the dogs like her big sisters. 

We went to Cedar Key. We rode golf carts around the island, and got some great photos of the girls. 

They got a bubble machine from Great Grandma Mary, and had a ball with it. We ran out of bubbles in no time. 

Nora does everything her sisters do. It's just so cute.