Monday, May 26, 2014

Sickies...but not that bad

Porter took a little trip to the Emergency Room again last night for breathing trouble. The good news is that suction did wonders and he didn't need oxygen. He doesn't have RSV or flu, so it's likely just a virus. His chest X-ray is clear :) They kept us for observation and as long as he breathes well during nap we will go home. He'll be on the nebulizer for a few days. 
He is much happier after sleep and a few respiratory treatments. He's enjoying not being quarantined this trip, walking the halls and visiting the playroom. He even saw the therapy dog.

He's napping now. Hoping he stays stable and we can head home :) 
Lots of love to the amazing team here at Bryn Mawr! They really are fabulous! 

Monday, May 19, 2014

Lucky #7

Seven years ago, we said "I do." 
Today, we celebrated with family dinner and watched our wedding video with the kids.
Watching the video and reliving all those happy memories was even more fun with the kids. Remembering those who aren't with us anymore...seeing how we've all changed over the past seven's so nice to remember all of it. Thanks to everyone who celebrated with us back then and especially those who continue to stand by us.
RC- I can safely say I love you more and more every day. Watching you father- so calm to my crazy. The way you patiently teach the kids to be better and stronger and more confident. You are my better half. 
I love you! Can't wait to see where the next 7 and 70 years take us. Happy lucky #7! 

Sunday, May 18, 2014


I love how real life works it's way into Penny's imagination. She's playing with aunt Nicole and I hear her say, "today is Elsa's first communion."
They're getting her ready for her special day :) We recently celebrated with her cousin Chloe and You can tell the things we talked about are sinking in. 
So lucky and blessed to have these amazing role models in our life! 

Tuesday, May 13, 2014

BFF ;)

There's nothing as awesome as watching your daughter become BFF's with your BFF's littles. 
 Penny had an amazing sleepover with the girls the night before Pinkalicious.
 The tickets were her birthday present from Aunt Nic & Uncle Dave. She got to sit in the front row with her friends. The girls were so well behaved. They loved the show, and the popcorn!
 Penny enjoyed getting to see where Uncle Dave works.
 And learning about how the Box Office works too :)
Fun times with friends! Couldn't be happier!

Sunday, May 11, 2014

Happy Mother's Day!

Happy Mother's Day!
Today, we spent the day as a little family...we didn't get to see these amazing women who've taught us so much; most importantly, how to love.  
To my mom- 
We're lucky you live so close and can be here when we need you the most. We're lucky you're there to teach our kids so many things- like how to hold a pencil or draw their letters. We're lucky you help us cook and clean and can get on the floor to play. Most of all, we're lucky you're here to love! 
To RC's mom-
We're lucky you spend your precious vacation time with our littles. You come to visit for birthdays and holidays and make sure they know you're just a Facetime call away. We're lucky you love to bake with the kids and laugh when they spill flour all over you. Most of all, we're lucky you fill our lives with love!
Great Grandma Jeanne- 
We're so lucky you spoil your great grandchildren even more than you did your grandchildren :) The kids love to explore your home and hear you recount the memories. We love that you share the chocolate! We love all the advice you have to give and realize what's important when we hear the wisdom you share. Most of all, we're lucky you give unconditional love!
We've got so many positive women role models in our lives. We are so lucky to have our aunts, Godmothers, sisters, friends, cousins and neighbors. We learn something from each of you and appreciate all the time you've spent and continue to spend helping us grow.  
To our sisters Megan and Becky, who are celebrating their first Mother's Day this year- congratulations! You're both amazing moms and we're so lucky to have our little nephews in our lives. 
 To all our sisters and Godmothers Kellie and Maureen- thanks for loving our kids like your own and being such positive influences in their lives! You have no idea how lucky we are and how much we appreciate you!
We love you all! 
 And really are lucky!
 Happy Mother's Day!
Sweet Dreams!

Thursday, May 8, 2014

Sleep Study- Take 1

Porter had his first sleep study this week. People with Down syndrome can be at risk for sleep apnea. He shows some warning signs- he breathes heavily and moves around a lot at night. Additionally, we are trying to determine if it would be beneficial to take his tonsils and adenoids out now after the rough winter he had, or if we can wait. 
I was nervous. After being on oxygen in January when he had RSV, I expected him to fight the nasal cannula. I worried he'd get tangled in the wires and wake up. I wondered if he'd ever fall asleep.
With the help of Elmo song videos on my phone, he was hooked up with minimal fussiness. He was fine before the super gentle and caring techs put in the cannula. Then he got mad. But we had a few sips of water and sang our bedtime songs and made ourselves comfy and he was able to fall asleep.
They monitored so many different things- respiration, pulse oxygen, carbon dioxide output, eye activity, snoring, belly movement and more. He slept all night. There were a few times he sat up while asleep and a few others where he was tangled in the wires. The crazy thing is that he was in a very deep phase of sleep at these points in time and didn't notice that he was being moved. 
I learned quite a few things about how he sleeps. I also learned that I'm an incredibly light sleeper, which isn't much of a surprise. Each time the tech came in, he asked if I was sleeping at all because I was hyper-responsive to Porter's every move. I did sleep a bit and was quite surprised when we made it to 5:45am wake up time (Porter slept ten more minutes while they unhooked most of the wires). He was so happy to have the cannula out and was even more excited to see his car seat and know we were headed home. We will get our results in a week or two. 
While at the visit, we made a new friend. Because the universe is so amazing, it just happened that a three year old boy with Down syndrome was scheduled the same night as us. This boy happens to live right up the hill from my parents. He traveled quite a distance for his sleepover. We will circle back with him and meet the rest of his amazing family next time we have a sleepover at my parents. We can't wait! 

Thursday, May 1, 2014

Coolest Gift Ever

A few weeks ago this arrived in the mailbox unexpectedly:
A good friend of mine who teaches seventh grade shared a lesson with her class on "spreading the word end the word." Her seventh graders took the pledge for Porter! And, for all the kids just like him. 
Unexpected, brilliant, heartwarming, hopeful. These kids can change the world! 
This believing birthday gift means more than any material gift Porter could ever receive. Thank you Lisa and class! And everyone else is taken the pledge, thank you!!!!