31 for 21: Day 13 Just a Relaxing Stroll

Today was the perfect day to go out for a mid day walk. So Piper, Tini and I ventured out for a walk around the neighborhood. I bought this new baby carrier (ergobaby) which I love and wished I had brought sooner. It is so much more comfortable to wear and it is easier to put Piper in and take her out, which is a major plus.
I think she liked it aswell...

Fast asleep by the time we got home... and is still asleep :)

31 for 21: Day 12 Another Trip to the Cardiologist

Today Piper had a routine check up with the Cardiologist. Now I don't know why but those appointments take forever. We arrived at 9:30, and made it to the room by 10ish, they went through the usual steps of getting her vitals. Then came the never ending echo. Usually I can give Piper a bottle and by the time she is done the echo is done as well. This time however she finished her bottle and the ultrasound technician wasn't done.
Trying to distract Piper while they finished was a rather large task, but with the aid of some light wand we made it through. The Cardiologist came in to talk to us afterwards. He told us that her heart looked and sounded good, however they couldn't get an accurate read on her tricuspid valve, to measure her possible hypertension. Before her surgery her levels were around 86 in May it was around 39 and hasn't changed since then. Normal is below 30, as she is possibly above it, he told us that she will more than likely need to  have a cardiac catheterization. Which means they will need to put her to sleep possibly using a general aniesthetic, and put a catheter through her groin into her heart to measure the pressure. 
Mark and I were hoping that once she had had her initial heart surgery that would be it, I guess that is wasn't that easy. I will keep you posted on what happens next. 

31 for 21: Day 11 Our Kids Future

So today, I was eating lunch in my college cafeteria, when three students from the Midland school were walking around with a woman and cleaning the tables. Never having heard of the Midland school before today, I decided to do a little research. It is a non-profit school for children with developmental disabilities servicing northern and central New Jersey. While sitting there munching on carrots, two thoughts crossed my mind: 1) Would Piper be best suited in an integrated classroom in a public school or in a private school dedicated to children with disabilities? 2) Why is it seen as perfectly acceptable for people with disabilities to be cleaning tables when I as a parent want so much more for my daughter?
Now, I know that someone has to clean the tables, everyone has their place in this world, blah blah blah.  But my hopes and dreams for Piper, and every child I have met with disabilities, go so far beyond custodial work that it is difficult for me to summon a feeling of pride or contentment when thinking of their life as a cleaning crew.  With the resources that are available today, the opportunities for our children are limitless, and we shouldn't constrain them with perceptions from the past.  In order to give Piper the best possible chance for a fulfilling place in the working world, we now need to decide on the best kind of education for her.   

31 for 21: Day 10 Acceptance

One of my family members posted this on Facebook a few days ago and I thought it spoke volumes....

Kids with Special Needs are not weird or odd. They only want what everyone else wants... to be accepted. She continued to say... Can I make a request? Is anyone willing to post this in honor of all children who were made in a unique way. Let's see who has a strong heart.

At first I thought it was a perfect thing to write for a post for Down Syndrome Awareness month, but the more I read the blurb I kept thinking that it didn't just include children specifically with special needs, as it mentions "all children who were made in a unique way." I was brought up to think that everyone was unique and different and we should accept them for who they are, not by what makes them different.

So I plead just like my family member, if you choose to act upon my request. Post the original post either on your blog or Facebook or whatever other social media you use. Lets see how many people we can reach with this message. I believe it is important to share the message of acceptance.

31 for 21: Day 9 Almost There

So Piper has been moving around in her own fashion for about a couple of weeks. She doesn't have crawling down but she will do a combination of roll, sit up, pivot to get herself to where she wants to be. When she attempts to crawl it usually ends in  a face plant. However she has been making great progress so much so that her PT, who was here this morning, thinks she will be crawling next week. I will keep you all posted on this development as it happens.

31 for 21: Day 8 First Rock Concert

Just thought I would post this for fun. After a long day at CHOP seeing specialist after therapists, for the neuro-cardiac clinic. Piper and I were exhausted by the end of it, she however got to take a nap, I'm still running on empty. I thought about writing a post about our day and going into the ins and outs of what they said and recommended. But later tonight after cleaning up the kitchen after dinner I stumbled across this in the living room and thought this would make a better post.

Piper attended her first "rock" concert, performed by her one and only daddy. She had front row seats she just need something to wave in her hand.

31 for 21: Day 7 Buddy Walk & Pancakes

So I wanted to start off by wishing my good friends lots of success in their buddy walk today. Raising money for the Trisomy 21 group at CHOP. If anyone is interested in donating click this link:Donate to the eM&Ms team for trisomy 21 program

Secondly today's weather called for a lazy Sunday, and that is exactly what we have had so far. We hung out in bed watching tv and chilling with Piper. Then we finally decided to make our way downstairs where Mark proceeded to make us some pancakes. Now we have had pancake sundays before in the past and our pancakes aren't the everyday plain ones they have either chocolate chips or white chocolate chips in them. Today Mark made those and one very special plain one.

That plain one was enjoyed by the very lovable Piper. Yes, today Piper had her first pancake, and she seemed to like it. Enjoy the photos.

 

  

Really concentrating on the chewing!

 Pancake remains in high chair!

Having fun with Daddy afterwards