Sunday, December 4, 2011

New York and Piper Jane

 Visiting my bestie also means we get to head to Pipers house (as Reagan calls it) Piper is 4 years old and lives at a children's rehabilitation center. When we get there Reagan first heads over to the drawers and picks out an ever so hip or thrifted outfit for Piper. She then brushes Piper's curly, blond locks and usually puts it into a very "in" halo braid. When Jake is there Piper grabs his hands and raises them up, that means she wants to be on Daddy's shoulders. The relationship between this cute little family  is truly inspiring, Reagan has such a fun and positive attitude about Pip Squeak (one of her many nicknames). Piper loves many things just like any other four year old, Having her Momma Reagan read her stories, play with little action figures and bears,  watching Yo Gabba Gabba on the I-pad, and playing with her little buddies when they come for a visit.. 

I took some Q and A's right off Reagans Blob 
 Q: What is Piper Jane’s condition called and how does it effect her?
A: It’s called CCMS and it mostly effects Piper Jane physically, specifically with her respiratory system. There are many minor anomalies, but the bigger ones are that she has an underdeveloped chin, a severely crooked spine and is missing half of her rib cage. The combination of these problems prevents her from breathing on her own, so she relies on a ventilator. She requires so much support that it’s not safe for her to be home with us. Which is basically suck-central.

Q: Lots of people can live at home on ventilators, why do you choose to have Pippy in the hospital?
A: I know, thanks for rubbing it in! It would be completely dangerous to have a child so fragile and vent dependent away from regular doctor/nurse care. Plus we’re just not even allowed…meaning, it’s not even an option for us.

 Piper and Luke played soo cute together... 

 Of course all three cuties couldn't be looking at one time right?

 Playing at the Park

 Tickles from brother

 Mr. Model face

This night we headed downtown to get Pizza, Jake was adorable with little Noah and told him we were going to be having "Monkey Pizza"

 On the Subway

Thanks again for the fun time Brienholts' we love you and will see you soon! 


  1. Ha! I love the "Mr. Model Face" shot! So cute! You have the most adorable little family - I just love it!
    And how strong are your friend and her husband?! That's simply amazing. Their little girl is beautiful, and it's so unfortunate that they don't get to all be together all of the time, but it's so great that they can stay positive about the situation!

  2. Regan is a strong women! Don't know what I would do if I could not bring P home! Piper looks happy! So adorb!

  3. I love that you always go to visit Piper! It's such a good experience for everyone involved and what a sweet little thing she is! And your little family couldn't get any cuter! Watch out, girls! Those boys are gonna be heartbreakers! (c:

  4. what a sweet girl! all children are God's gift and precious in His eyes and I can tell she is very much loved by her parents

  5. thank you for sharing this beautiful and touching story about piper. she is such a precious and lovely little girl! and reagan is such a great and strong woman!
    xo TJ

  6. Oh the little darling, she's adorable. Is she your child, or your best friends?

    I actually live in Germany, but I'm from California orginially. I've lived in different parts of Europe the last 10 years of my life.
    Thats cool that you always get to visit Austria, sprichst du deutsch schon? Bestimmt, oder? :)
    How did you and your husband meet?

  7. Ok, I just re-read it again, and I got this time that Reagan is her mom. Nevermind my question before :)