Can't Get Me!

They were eating Popsicles one second and the next thing I know... they have the hose! The big one started it! (Sometimes... no most times, I am the only adult at our house!) Although the little people were trying really hard to provoke him! :) They do have A LOT of fun together! 3 little peas in a pod! The hose water is like bath water! And it's been hot and muggy for a while. So even when they were soaked to the bone, there wasn't much motivation to stop! :)

Luckily I had Reagan and the camera, so us girls managed to stay out of it! But she thought it was HILARIOUS! It really was pretty funny!

Heritage

Happy Pioneer Day! Our ward had a party to celebrate! There was a competition for the best dressed family, you could either dress like pioneers or wear your patriotic duds. We went with Patriotic since the kids all got new stuff for the 4th and it was a good excuse to wear them again! I don't have any great pictures... but we WON! That's right! :) Truthfully, Reagan won, the rest of us did by association! But she totally deserved it! (She had carrots for lunch, 3 hours before I put the white shirt on her!) :)

This tutu wouldn't fit her for the 4th, and Patrick wasn't so sure about her wearing it! But it fits her now! It's freaking adorable! She got SO much attention, it was ridiculous! ...And it won us a gift card! Yes! Thanks Kenny and Jenny!

The Answer...

...to all of the questions. Miss Reagan has taken us on quite the little journey since joining our family just 6 months ago. We've been to a lot of doctors and we've been slowly but surely finding the answers we have been looking for.

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!

I have always marveled at what a miracle babies are. Especially my own! How they somehow manage to be born with all their working parts! And then they grow, and learn, and change, and everything just keeps up! It really is a miracle! ...When I look at her, I understand it differently, more deeply, it's somehow magnified. That that one chromosome, one microscopic defect, changes everything. And yet, for everything that it changes, she is somehow as perfect as she is! Beautiful and sweet and healthy and perfect!

(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.

(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!

Where can I stick this?

This is Barricade. He is a Transformer. A Decepticon. He is also missing his head.

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.

Then we explained that we don't put things in our noses, because they get stuck and then we might have to go to the doctor to get them out. To which Jackson pipes up and asks "Even fingers?" "...Um, especially fingers! Unless you want to lose them." His eyes almost popped out of his head! Wow, check us out! Two birds with one stone!

Utah - The Rest of the Trip

With all of the festivities over you would have thought things would have slowed down, but not so. We managed to bounce around as much as possible, most days being at 3 or 4 places throughout the day. I don't have very many pics, which is disappointing. But I am going to get some from family, and when I do I may have to update this post. :)

Some of the things we did do: Lots of FAMILY! And lots of visiting and hanging out... and eating, BBQ's are the best! It was great! We got family pictures taken, which I am SUPER excited about! (And I will post when I get them!) Patrick and I got to go on a date, we saw Eclipse... we should have seen Grown Ups! :) But we had fun together just the two of us! We got to meet baby Morgan and play with the Facers! We made it over to the Stevensens to play too! The kids PLAYED... all day, every day! The boys had 4 sleep-overs! Which was exciting for them... and oh so restful for mom and dad! :) They got to go to the Dinosaur Museum with Grandma and Pops. (Pics to come of that too.) They got to swim and play a lot at Grandma & Papa's house... and they loved playing with their cousins, Sammy and Erica. (That's what the airplane is actually for!)

We also got to go to "Woody's Farm" to ride horses and play with dogs and chase chickens! We actually have a lot of pictures of that! :)

They love to ride!

Jackson did it all by himself!

Harrison just never stopped smiling! :)

So sweet... and SO tired!Loving the dogs! There were 7 of them, I think!Chasing chickens!I planned a surprise party for Patrick's 30th Birthday while we were in town with all of our family. Thanks to everyone who helped and came over! It turned out pretty good, we had a lot of fun, and he was very surprised! ...My camera died (rrrrr!) right before he walked out into the back yard! Seriously! But Pops got lots of pictures, so I will have to update this too! These are before the party started. 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 tire that gave us some trouble! ...In the middle of nowhere in 102 degrees! 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!

Utah - 4th of July - Monday

Monday morning was the Layton Parade. We met up with my mom and dad, all the kids, Jake and Whitney, Kenny, Eric and Steven. ...I love parades, where else do you get candy thrown at you? You don't even have to work for it! :) The little people were tired, but they had fun! Harrison got passed around more than Reagan did! :)
Reagan loving the shade!
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! :)

The Swain boys... and Reagan.

Happy family picture! haha.

We hung around for a bit after it was over and caught up with some old friends. Patrick even got to see a few of his LPD buddies. Then it was off to the Swain Family Bash! Again with the LOTS of eating! :) We just hung out and talked and the kids played! It was great! Grandparents, Great Grandpa, aunts and uncles and lots of cousins. Uncle Tracy and Aunt Evelyn were here from Connecticut with his cousin Steven too. (I'm sad that I don't have better pictures!)

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!

We were exhausted, but it was totally worth it! :)