Reagan has a very special cardiologist who went completely out of his way to get us into the geneticist (who is booked out until May 2011), he got us on a waiting list for an opening. And about a month ago, they called. I was especially nervous about this appointment, knowing in my heart that he was going to confirm what had already been suspected. But as soon as we met him I knew 2 things. 1 - Why people wait so long to see him, he is just a neat person. There was something very calming about him. And 2 - That everything was going to be ok!After a couple of minutes with Reagan, he made a clinical diagnosis of Rubinstein-Taybi Syndrome or RTS or Broad Thumb Syndrome. Very generally speaking, it's similar to Downs Syndrome. They are smaller in stature, they have similar facial features to others with the syndrome. (Although, he did point out that her features were not as dominant as they could be.) And yes, she will also have special needs. Her fingers, high pallet, toe and feet, trachea, and even her beautiful hair are all symptoms. It is very rare, about 1 in 300,000. There are a lot of associated health problems: heart, lungs, digestion, feeding, sight, skeletal deformities, etc. - ranging in severity. Most of which she has had no sign of. The fact that she came home with us like any normal healthy baby is truly a miracle! And she has stayed that way! We have been SO blessed! And we see it every day!
(Her cute hair for the 4th of July.)
I'm not going to lie and say this has all been easy. There have been tears, lots of tears. For LOTS of reasons! Fear, gratitude, heart break, love, sadness and joy! And prayers, for just as many reasons. We have spent a lot of time on our knees. And we have been especially grateful for all of the love and support and prayers! It hasn't been the easiest road, the past 3 months have felt like a lifetime! But we're here now, at a second beginning, with an answer and a direction.
She is our daughter, and we love her more than she may ever know! We have no doubt she is exactly the way she is supposed to be! She will be our sweet, innocent little girl for her whole life! And we couldn't be more humbled or grateful to have her! 
I'm not going to lie and say this has all been easy. There have been tears, lots of tears. For LOTS of reasons! Fear, gratitude, heart break, love, sadness and joy! And prayers, for just as many reasons. We have spent a lot of time on our knees. And we have been especially grateful for all of the love and support and prayers! It hasn't been the easiest road, the past 3 months have felt like a lifetime! But we're here now, at a second beginning, with an answer and a direction.(The 3 of them, watchin' a movie. I love this picture.) 
We continue to learn and grow and be forever changed by her presence in our family. She's made a special and unique mark. Just like her brothers. They each have their role, their personalities, their challenges, their strengths. They teach and love each other so much! It's what makes us great as a family. And we want the same things for all of them, to be happy and to be loved! 
Where we go from here? We will be following up at the geneticist with blood work. RTS is not always provable with testing, which is why its a "clinical" diagnosis, but we still need to get it done. However, that does not mean that there is a chance she doesn't have it. She has been diagnosed. We are going to the eye doctor next week to check things out. And she will also have her 6 month check-up next week. She is now the owner of a duel foot brace, we call it her snowboard. It's meant to hopefully correct her feet and help us avoid surgery. She will be in it 20 hours a day for 3 months. So keep your fingers crossed! :) If you would like to learn more about RTS you can visit http://www.rubinstein-taybi.org/ .
She is our daughter, and we love her more than she may ever know! We have no doubt she is exactly the way she is supposed to be! She will be our sweet, innocent little girl for her whole life! And we couldn't be more humbled or grateful to have her! 
This is Barricade's head. About the size of a pea. Just about the same size as... let's say a right nostril. 
This is the nostril where Barricade's head was almost lost forever! 
This is the story: He was in the bath with Jackson, like normal. (Although I should probably know by now that the bath with both boys in it is a bad idea.) I was out in the kitchen cleaning when Harrison's little naked body came running out. I told him to get back in the bathroom because he was wet and he just kept saying gibberish and then "nose". So I take him back in the bathroom and am going to wipe his nose, thinking he has a booger that is bugging him, when Jackson pipes up and says he stuck the transformer in his nose. Oh, so maybe his nose hurts. After more questions Harrison doesn't answer Jackson lets me know Barricade's head is in his nose. What the? Why would you do that? I didn't ever figure that out. But we wrapped him in a towel and attempted to get him to blow it out. Not happening. So we get the tweezers, and then the crying and panic starts. He was fighting us. Which means boogers and sniffling and flailing. Ya, we thought for sure he was going to suck it up into his brain and we were going to be telling this story to some ER doctor who would think we were horrible parents. But for 2 seconds we got him to lay back and hold super still and Patrick, with amazing skill, managed to grab it with the tweezers. 
They love to ride! 
Jackson did it all by himself!
So sweet... and SO tired!
Loving the dogs! There were 7 of them, I think!
Chasing chickens!
I planned a surprise party for 
Overall, it was a great trip! We were running on fumes a lot, and we tried really hard to see as many people as we could, but there never seems to be enough time! And leaving is always bitter-sweet. ...Saturday we made the rounds and said our goodbyes and Sunday morning, bright and early, we were off! We made it home with minimal drama, the kids did pretty good. ...It was a specific
Luckily Patrick was driving, and we had a spare, and he was there to change it! Sadly, we were right under some sort of super power lines that were so hot Patrick got shocked every time he touched metal on the car! 
We made it to Flagstaff on the spare early enough to get new tires and get back on the road. The trip ended up taking 17.5 hours, which makes for a long day! The boys crashed in the car and didn't wake up until the next day, Reagan was done once we got to Phoenix, but she was a trooper. We are glad to be home, back on some sort of schedule and back in the swing of things. We love and miss everyone! Thanks for all of the fun! 
Papa and the kids, waiting for it to start.
Harrison and his soul-buddy! The one-eyed look is his "I'm resting one eye and using the other because I am too tired to keep them both open" look! :)
Jackson had a mishap with the trampoline. It tried to knock his teeth out! He was standing next to it and a spring just randomly popped off and got him square in the mouth! It was a bloody mess, but nothing ER worthy, thank goodness. He was a trooper, he was up and going again just in time for fireworks and sparklers! 
Sunday we went to church in our old ward, which was fun and weird at the same time! :) And then headed over to my parents house for the 
I love this holiday! And I love that it lasted 3 days for us this year! :)