Friday, March 21, 2014

Down Syndrome Awareness Day- 3/21/14

Somehow this was never published back in's been sitting in drafts since then...OOPS!

To Our Family, Friends and All of Porter's Peeps,
World Down Syndrome Day is held each year on 3/21. On this day, we acknowledge that the third copy of the 21st chromosome has changed our life in a most positive way. Porter's extra chromosome has opened our hearts and helped us better understand that all life is a perfect gift.  
It's a day we can thank all those people who are helping him succeed. Everyone from our family to his doctors and therapy team to his daycare teachers and his friends. Because of your support, we're able to look back at the past two years, appreciate how much Porter has progressed, and look forward to what the future holds.
It's hard to believe that this floppy baby, who scored a 3 on the Apgar, is now a man on the move. He's got opinions, friends and he communicates pretty darn well. He's starting to spontaneously say words and ask for people- like "Daddy" and "Ash" (his teacher Miss Ashley) and things- like "more juice" and "accic" (aka- attic). 

We hope that Porter has taught you some of the same things that he's taught us. Here are some of the most important lessons my son has taught me over the past two years:
  1. Throw the "rules" book out the window. He'll do things in his own time. Of course, we'll arm him with some tools to help him along the way. But it doesn't matter if he walks when he's 1 or 3. He's going to walk.
  2. This world is filled with amazing individuals who never would have become part of our world if not for Porter's extra chromosome. I've met some strong, determined and inspiring individuals.
  3. Education is our best defense. Education can take many forms. We learn from doctors, our Early Intervention team, publications and most importantly, other families who are living this amazing journey along side us.
  4. Every person with Down syndrome is different. They all have their own different strengths. 
  5. The sky's the limit. We don't know what Porter's future will hold, but we have to encourage him to work harder every day so he can meet success.

Thursday, March 13, 2014

He's 2!

Our big guy turned 2 on February 28th. 
At his two year appointment, he weighed 29 pounds (62% on the typical charts) and was 35.5 inches tall (77% on the typical charts).  They don't even chart him on Down syndrome growth chart because his growth curve is perfectly typical.  We had another round of blood work and are happy to report that his thyroid levels are all in the "normal" range!  Aside from this winter's respiratory illnesses, this kid is healthy! We are truly blessed! 
 At two, he's pulling to stand, climbing the stairs, belly off the floor crawling FAST, taking 20 - 30 steps at a time with his walker wearing his Sure Steps, and attempting to climb onto anything and everything he can (the couch, Penny's bed, toys, etc). I can't wait to see what he can do at the playground once the weather warms up! He's saying many words and doing many signs. His favorite songs are 5 Little Monkeys and Alex and the Kaleidoscope Band's Tyrannosaurus. You should hear him roar along!
We recently had our Early Intervention Annual Evaluation. Porter is doing so well in communication related and social related areas. His fine motor skills are developing so well! And, while we're well aware that he's lagging in the gross motor development area, we know that he will walk as soon as he's strong enough. In the meantime, all this crawling and climbing is doing wonders for his floppy core :) We also had a visit with Dr. Pipan at CHOP's Trisomy 21 Program. Dr. P spent over an hour with Mr. P. Our entire visit lasted three hours. We were seen by PT, OT and we enrolled in our first clinical trial that will allow the researchers to use the information from Porter's annual visits at Tri21 over the next ten years to gain insight into Down syndrome medical and developmental issues.  We're excited and happy to be part of this study and look forward to hearing more about the progress over time. The team at CHOP confirmed that we're on track and that our EI team is amazing! Dr. Pipan offered so many insights. She did confirm that Porter's biggest battle is low muscle tone and said that she's happy he's not walking yet, as he would be destroying ligaments and building bad habits due to the fact that his muscles just aren't strong enough. We just need to get him stronger!
OK...enough on the developmental update. Let's get down to the fun! 
Mr. Porter had some very special visitors for his birthday.  Grammy and Pa made the trip from St. Louis to celebrate with Mr. P! 
Penny wasted no time and got straight to her favorite activity with Grammy- baking cookies. I think Pa and Daddy also love that Penny likes to bake with Grammy :) 
 Porter helped with some of the measuring, but decided that he would rather help build his birthday gift with the boys :)  This lucky boy got a set of building blocks just like his daddy had as a kid.  Right now he's best at demolition, but he's getting pretty good at stacking!
 After dinner (Penny decided that Porter's favorite dinner is quesadillas), we got down to the birthday business.
 We hoped Wegmans would have Elmo cupcakes, but these Kermit ones were pretty awesome! And fun!
 Porter definitely enjoyed his cupcake.
 And, he wanted to give you all a giant hug as soon as he was finished!
Kisses, hugs and birthday love! Happy Birthday Porter!

Tuesday, March 4, 2014

Spread the word to end the word

Tonight I'm posting a picture. Please look long and hard at it. When I see Porter exhibit this behavior, I usually delete the picture, because this behavior is part of what society stereotypically associates with the R-word.
Aside from being a photo that shows off their loving bond, this picture shows what happens while he is focused on other activities. His mouth opens and his tongue hangs out. Low tone curses him yet again. Most of the time, he's super conscious of lip closure and does not allow his tongue to protrude. We've worked long and hard using Talk Tools methodologies to limit these behaviors. But, when he has a cold and is focused on other activities (in this case, learning letters and numbers with sister), It can happen. And I'm so scared of what people think when they see it happen. They could be thinking the "R-word." Ouch!
Let me share some of the facts I've learned over the past few years. Your lips and tongue are muscles. And Porter's low tone means he's working so much harder than you and I work to make hus muscles work. We do oral motor exercises, drink from straws, blow on horns and work endlessly on proper chewing in order to lessen this specific tongue protrusion. But, it can still happen. And it does. And then I worry about what people think and could possibly say. Which gets me to worrying about the first time someone uses the word in front of Penny, or worse, when Porter hears it and understands.
The "R-word" hurts. It hurts to know that is what people may think or say when they see tongue protrusion or other behaviors that are completely explainable but different from what we think is typical.
Tomorrow, 3/5, please spread the word to end the word. Make a conscious effort to take the "R-word" out of your vocabulary. Do it for Porter! Please! 
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