Monday, October 20, 2014

Happy Birthday Daddy!

Dear Daddy,
We hope you had an awesome birthday. We had so much fun making your cake
and even more fun eating it with you!
We love you lots!
Hugs & Kisses!
Love, P & P

One year

October 4th was a rough day for me. I spent the day with my little loves, doing mommy duties that are possible because of their existence. I spent the day appreciating the moments, because I'm in awe of the things these two are doing. But I also spent the day wondering how our lives would be different if a baby had arrived in April.  
It's been a year since we learned our family wouldn't be expanding in the way we had expected. In hindsight, after all my health problems this past year, everything happened in the order that allowed for closure and healing. But, that doesn't mean we're still not missing a piece of our family puzzle. 
I'm thankful that I've got two amazing kids who help me smile each day. And that they've got one heck of a guardian angel watching over them from above. I'm thankful that I was able to throw myself into Buddy Walk this fall to help keep me busy and happy. And most of all for amazing friends and family who are always right there when we need them.
Last year's Buddy Walk was a rough one for me. I was carrying around a baby who would never walk on our team. A year later, I understand that bringing that baby to Buddy Walk was important for me...because Buddy Walk is our community. I was surrounded by love and support, even though most people had no idea what was happening.
This year's Buddy Walk was filled with hope for our future. Filled with the knowledge that we've worked hard to help build a community for Porter and Penny to thrive. Filled with the knowledge that what we have is enough. And that where we are is an amazing place to be.

Monday, October 13, 2014

October- Down Syndrome Awareness Month

It's Down Syndrome Awareness Month. I've been posting daily on Instagram/Facebook/Twitter with some things we've learned. 
Day #1: It's October! Down syndrome awareness month. We celebrate this month in our home, because of the amazing things Down syndrome has brought to us. I'll be doing my post a day about Down syndrome each day in October, as I have in years past. I think our experiences can help others understand that #morealikethandifferent is real. We all advocate in our own ways. But even at two, Porter is his own advocate- letting us know when he wants to be more included. This morning, he visited Penny's classroom. They wore their matching shirts. We danced with her friends, as we do most mornings (seriously- I walk in the room and twenty four year olds yell "do the dance"...we started dancing at drop off and pick up when Porter was just a baby and they all love it). This morning, twenty four year olds surrounded my boy with love, each taking their turn to pat his head, give him a hug or high five him. There are twenty four year olds who notice his orthotics and feel comfortable asking me questions about things they see as differences. There are twenty four year olds who are understanding acceptance because of Porter. I hope that when those twenty four year olds spread their wings in kindergarten next fall, they'll see that kid who is a little different and will greet them with open hearts, minds and arms. 
Day #2: In our house, toys are therapy tools. The train table was a major incentive to pull to stand and then take side steps. The grocery store helps us learn numbers in the standing position. We work hard to keep his core active- he likes to rest his belly against things at times because it's less work. We try to make gross and fine motor play as fun as it can be. And we find most of these items at thrift stores and consignment sales. We think about play a lot more than we did when Penny was two! 
Day #3: Sensory play...something I didn't give much thought to before Porter's arrival. But, sensory play is a huge part of our Fridays. Good old finger paint is our go-to, but we try to incorporate science concepts whenever we can. Today we made "Halloween slime" with borax and Elmer's glue. It was fun but super messy (easier to clean up than I expected). Both kids got lots of sensory input from the weird consistency.
Day #4: Inclusion begins at home. Sure, it would be easier to make waffles without their help, but what is that teaching them? Even though he's two and not yet walking, Porter has jobs. He puts his clothes in the hamper every night, brushes his own teeth before we do a final cleaning, washes his body in the tub and puts some toys and books away. He wants to be included. He likes to measure and pour. Sometimes it's messy, but we're all learning, right?
Day #5: The community that we've become a part of is absolutely amazing! #chopbuddywalk 13 years strong! We've seriously met the most amazing people! #31for21 #downsyndromerocks
Day #6: Let's talk ears. People with Down syndrome may experience a certain degree of hearing loss. Their ears are lower set, lining up between their nose and mouth. Their Eustachian tubes are often narrow and may not drain properly. Fluid and pressure build up, making it difficult to hear. Ear infections recur. Tubes are often recommended. Porter is on his second set of tubes. He visits an audiologist regularly to have his hearing evaluated. We know he can hear at all frequencies, but we're not sure how well. We do believe he has some mild hearing loss in his left ear. Despite this, he is learning new words daily and talking and signing up a storm! 
Day #7: Let's talk. Seriously. Speech therapy started long before Porter said his first words. Because speech is so much more than words. It's things like "oral motor protocol" that we've worked on since birth to strengthen the muscles in Porter's jaw. It's lip closure. It's straws and horns and bubbles- fun activities designed to help him grow stronger and develop muscle and breath control that will help him talk. It's signing- eliminating frustration by giving him the means to communicate until he can. And finally, it is speaking. Annunciation. Stringing words into phrases. Understanding the W questions. Responding to open ended questions. Following two step directions. Setting him up for success. We are incredibly blessed to have met Miss Lori, our amazing speech therapist, early in our journey. She is Talk Tools trained and focuses on kiddos with Down syndrome. She LOVES our son. She fights for him! He is excelling because of her. We learn more every week.
Day #8: Routine. Porter thrives on it. Creating a routine helps him understand expectations. It helps him transition between activities. We have morning and bedtime routines. We incorporate therapy activities into our routine. Porter attends a typical daycare. They have been open to helping create routines within the school day, because most two year olds do crave structure and routine. Transition times between activities can be difficult for Porter and others with Down syndrome. It likely took him a bit longer to get started with an activity and it also takes him a bit longer to part with that activity. This can be seen as defiance or noncompliance, which can at times be problematic. In one extreme case, it resulted in the accidental asphyxiation of a man in a movie theater by two off duty police officers who deemed the man with Down syndrome to be defiant. They didn't understand the difficulties associated with times of transition. We've developed a behavior plan with Porter's team that we use to help with transition. We count backwards from five to one and repeat the transition command. Sometimes it takes one or two tries, but the consistent use of this countdown has really helped him understand what we expect. 
Day #9: It takes a village. We're not doing this alone. We have help from our families, friends, therapy teams who've become friends, neighbors and an extended family of people who love people with three copies of their 21st chromosome. We learn from every direction. Some days we need more help than others. Thanks to everyone who is part of our team! 
Day #10: Severe obstructive sleep apnea. It's a pretty scary thing. Porter, like many people with Down syndrome, has sleep apnea. He stops breathing and desaturates while asleep. Low muscle tone and anatomy (smaller airways and nasal passage ways) are the prime causes. Oxygen deprivation is no joke, especially for someone whose brain is already working a little harder to do everything. Last month, Porter had his tonsils and adenoids removed, which is step number one in the efforts to allow him to breathe more clearly while he sleeps. We will do a repeat sleep study in a few weeks to see if this makes a difference. There may be a C-PAP machine in our lives at some point in the future. Sleep science is fascinating. While they studied Porter during his initial sleep study, I learned a lot about his sleep cycles. As I suspected, his REM cycles are quite different (shorter, less frequent). there were periods of time he would sit up in bead and talk while fully asleep. He's been my sleeper since day one...we had to wake him to feed him as an infant. He slept through the night at six weeks. He's always slept better than his sister. He does toss and turn, but sleeps through it. I guess if it wasn't protocol, I wouldn't have worried too much about his sleep. But the Trisomy 21 Program at CHOP has amazing protocol that helps guide us. We'll continue to learn about how he sleeps and we'll do our best to ensure his brain gets the oxygen it needs to develop to its fullest potential.
Day #11: I don't think I need to tell you that his smile is contagious. Everywhere we go, he flashes that smile. A silent "please love me." Tonight it was some senior citizens at Panera, earlier today some people at a christening party. I watched him flirt and work a room like only he can. I know that he's still a cute baby and I know his smile melts hearts. But I also know that as he grows, his smile will become less effective. As he grows, the differences will become more apparent. And society may turn on this kid...I'm hopeful for his future. I'm also hopeful that the next time you see an adult who has an intellectual disability, you'll remember Porter's smile. And perhaps you'll smile back, take a minute to say hi and remember that they're just as much of a person who just as much wants to make personal connections with you. A smile can make all the difference. A smile can make someone's day! 
Day #12: 31 months and not yet walking. His progress is slow and steady. But people assume he is younger than his age because he's not walking. His school is hesitant to move him ahead in class because he's not walking. Gross motor is his #1 delay. His muscle tone is incredibly low (Apgar score at birth was 4...he was so floppy). His ankle joints are incredibly loose. I remember changing his diaper as an infant, worried I would pull his ankle joints out of the socket. I asked the pediatrician about his ankles at every visit, looking for ways to make them stronger. Out PT has worked on this joint from day one. We learned infant massage. He got his first set of sure steps around his first birthday to help promote proper alignment. But it's been super slow going. We understand the developmental importance of crawling- major necessity for fine motor development. And his belly off the floor crawl burst into our world around thanksgiving last year after months of army crawling. Even still, We started treadmill training as soon as he could handle it. We bribed him with eight minutes of Elmo to get it done. We have tried a walker, a baby stroller and everything in between. He currently uses a little tykes grocery cart. And in the past month, we've reached the point where he seems to want to walk, but his body is just not cooperating with what his mind wants. We can see the wheels turning- see him being so brave! We see him getting stronger. He will do it. And we will have a HUGE party to celebrate. He hits some milestones on time, without much fanfare. But those milestones we work extra hard to reach are met with extra celebration. Hope to be celebrating soon! 

Tuesday, October 7, 2014

Porter's Peeps 2014

Dear Peeps,
Porter here. I want to tell you about the best Buddy Walk ever! Do you know what it feels like to have most of your favorite people in one place? It's like Christmas, only better. You want to see our awesome team. Here they are- over 100 Peeps strong. 
Let me tell you about some of my team and why they're important to me. First off, are my amazing therapists. Miss Lori, my speech therapist, Miss Ellen, my PT and Miss Melissa, my behavior therapist (who somehow avoided photos) were there. And, Miss Randi, Miss Tara and Miss Lisa were definitely there in spirit. These ladies have been helping me get stronger since I was born. I'm going to skip my birthday this year so I can keep them on my team.  
My Malvern Peeps were out in full force. Miss Julie, Miss Lauren, Miss Melanie, Miss Larcena & Miss Krissy rock!
 Now I'm going to introduce you to some of my friends. Alex lives next door and he has a puppy. I love them! Papa and the Crater's have been part of the team since my first year. Ashlee is pretty amazing and so are her parents!
 This next little lady is mine. Just in case you were wondering. Thanks for being party of my team Devan! And for sharing secrets with me. I love you! And your family!
 Next, I'll introduce you to my cheering squad. Yes, I travel with an entourage. And yes, they're not only beautiful, but smart and talented too. I visit them upstairs at school and watch them play on the soccer field and dance class. They're awesome!
 Time out from introductions- we have real business to take care of. We have to get walking! Papa- push me.
 Did you see this? My name on the scoreboard. You all helped get it there! We were one of the top 3 fundraising teams. Thank you!
Ok- more about the fun! There were cheerleaders who remembered me from last year.
And cheerleaders who were from Villanova (did you know Daddy went to Villanova)! 
And even some cheerleaders from the 76'ers. Honestly, I think cheering for the Buddy Walk is way more exciting than cheering for Basketball. Do you?
So those are my new friends. Now, let me tell you more about my other friends. Emilio and Lorena were in the house! Little dude is trying to teach me how to walk and I'm trying to teach him some new words. We always have the best time together. 
These kids are pretty cool. Their parents went to college with my parents. I wish we got to see each other more often because they know how to have fun! 
 I'm not so sure about these two friends. They look fierce, but I have a feeling they're big teddy bears at heart.  
 Jadon, Lena and Evan were in the house! 
 And Miss Sandy, Brianna and Quinn's entire family. Do you know how lucky I am to know these people? Quinn and I are going to go to school together when we grow a little bigger. Like kindergarten bigger. Isn't she amazing?
 You already met my best girl Devan, but here is her amazing family. And my friend Jane. These two girls will knock your socks off with their moves!
 Speaking of moves, have you seen mine. I walked more than halfway around the track with a little help from my friends.
 All this kid did was sleep, sleep, sleep. And I walked, walked, walked :)  
  The weather was perfect!
And so was my company! My best friend Lexi and her awesome sister Izzy came to see me! Malvern friends rock! 
 I need to ask why I was excluded from the "Kadingo sister" picture and why those Kadingo sister's take so many pictures? Aunt Heidi and Brian- thanks for coming again this year! 
Want to know a secret about this girl. She is snugly. And funny. And pretty!  
She must get it from her mom. And the funny from her dad. Mommy warned me- if Uncle Brian tells you to play in traffic, don't listen. I don't really believe mommy when she tells me stories about how he used to tell her to play in traffic when she was my age. 
 Cam- you're so sweet to me. Thanks for being part of my team!
Daddy was telling me all about this place called Villanova. He said he learned so many things there and that maybe we'll go to see a basketball game soon. It was so nice of his Villanova friends to come out for the fun! Did you know that Uncle Mike went to Villanova? He and mommy keep saying that accountants are cool, but I'm not so sure. Aunt Bridget and Uncle Sean went there too. I think they do things that are much cooler than accounting.  
 There are lots of people missing from photos. Lots of people who worked together to make me feel so very special. Like all those Fitzpatrick cousins. Did you know Lily and Brian came from Maryland to be on my team? Godmother Kellie came even though she had to go to work later that night. And so many more.
I want to send special thanks to Dr. Risa Roland from Metropolitan Veterinary Associates. She's my friend Bella's mommy and she's my friend too. She makes me smile! She went out of her way to help with the fundraising! Special thanks the Nasuti family, Aunt Missy and her friends, Sam Beaufait and everyone else who made a donation. We can't thank you enough! 
I posed for more pictures with my family before they let me have my Kona. 
 I didn't get tired of the paparazzi the entire day. It was kind of cool that they just kept on clicking!
Because there was much to smile about :)
  Do you know about Kona Ice King of Prussia? Miss Julie and Mr. Bill and their beautiful daughter Devon came out to help CHOP raise more money. It's a win-win. Ices are my favorite! Thank you Green family for all your support! And Grace- mommy told me that you and your friends started the walk thirteen years ago. Thank you so much! I want to be just like George when I grow up! 
I also want to tell you about the coolest part of Buddy Walk- the raffle. My friend Evan's mom and dad worked so hard to get amazing prizes for this year's raffle. And boy was it amazing. 
 We had the most amazing day, but it didn't end there. After the party was the after-party. We went to a bar that mom & dad used to hang out at back in the day, BP2 (before Penny & Porter). There was football on TV and nachos and pizza for me to eat. And there were friends. I love my friends!  
Sister sat at the girls table, but I decided it would be more fun to sit with the Ryan's and Bersheim's. We talked about all sorts of fun things and I told stories too. Then, we played pool. 
And had a super fun dance party in the back room.  
 Did I mention that Sophie was there? We go way back...we swim together :)
 Mommy made a big deal about her college roomates coming to town. I can't complain- they brought their super fun kids with them. 
 Serious fun!
 I really liked this guy. I told him he should bring his sister Ashlee around more often too!
Mommy made us pose for all sorts of pictures. You know, mommy and that camera of hers.  
 She finally let me rest with my aunties. And Codie. 
 Jason- I order you to bring Liam back to the neighborhood. I did not approve your house sale and I want to revoke the contract. Liam and I made big plans to build a sky-walk between our bedroom windows so we can hang out at night. You ruined our plans. I guess I'm going to have to dig a tunnel to your new house. We're discussing our options.
Guys- this was the best day ever! I ate good food, did some good walking, saw so many friends and did so many fun things. Thanks for coming to support me. I hope you'll come back next year. Oh- Mommy told me about the money you donated. It's going to help Dr. Pipan and her team help me and my friends. I love Dr. Pipan. She always helps me show mommy and daddy that I can do things they didn't know I could do. It's a secret agreement we made the first time we met- whenever I go for a visit, she asks me to do a fancy new trick and I do it. And mommy and daddy sit there laughing, because they know they should expect nothing less from me! Dr. Pipan rocks! 
To my Peeps who were with me in spirit...thanks for sending love from across the country! Save the date for next year- first Sunday in October. And come visit. I'll let you share my room!
You guys are awesome! Thanks for being my Peeps!