31 for 21: Day 20 Trapezee Fun!

Sorry I didn't get to post this yesterday, we got in late after a fun filled day at the trapeze. Yesterday was Fly School Circus Arts Student and Staff fly show. The weather was perfect and there was a nice crowd. The students started the show off to a great start. To start the staff show Mark flew a perfect layout to the net out of lines, (see pics below). Mary Kelly (the owner of Fly School Circus Arts) flew her Uprise Shoot to Mark. Followed by Liz who flew her shooting star. Mary Kelly then threw her splits and finally Liz threw her layout. Piper and I were so excited and proud of Mark and everyone who flew in the show.

Piper and me cheering on Mark

Mark in his show outfit

Mark getting ready for take off

Mark holding for his layout

Mark throwing his layout to the net!

Mark catching Liz' Shooting Star

Mark catching Mary Kelly's Uprise Shoot

Mark catching Liz's Layout

 

Staff and Student flyers

31 for 21: Day 19 A Good Book(s)

On a day like today when it is gloomy and consistently raining, all I want to do is curl up on the couch and read a good book. Which made me think... I actually haven't been able to fully read a book from cover to cover in a long time, I think the last time I came close was on the cruise. Anyway I decided to make a list of the top 5 books I think anyone who has a child with Down Syndrome should read or has a family member who has Down Syndrome (grandparents, other extended family and even friends) So here it is... My only pointer is to have a box of tissues near by for the memoirs.

Bloom: Finding Beauty in the Unexpected--A Memoir by Kelle Hampton, a memoir about Kelle's second daughter Nella, writing about her fears and pain of the life she had expected for her daughter. And how she learned to "Find beauty in the unexpected"

       Kelle also has a blog which you can follow at http://www.kellehampton.com/

Good and Perfect Gift, A: Faith, Expectations, and a Little Girl Named Penny by Amy Julia Becker (a good friend of mine) writes about her daughter Penny and how her faith revealed how much of a blessing Penny is to her and her family.

      Amy Julia also has a blog which you can follow at http://www.patheos.com/blogs/thinplaces/

Road Map to Holland by Jennifer Graf Groneberg, is a mother's journey of the first two years of her son's life, after finding out that one of her twin boys was diagnosed with Down Syndrome
     and Jennifer's blog http://jennifergrafgroneberg.wordpress.com/

I also suggest...

Babies with Down Syndrome: A New Parents' Guide edited by Susan J. Skallerup

I've joked about this being the manual for having a child with Down Syndrome, the great thing about this book is you can flip through and find the answers to anything you might have about having a child with Down Syndrome. 

Last but not least on my top 5 list

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives and

Gifts 2: How People with Down Syndrome Enrich the World by Kathryn Lynard Soper and Martha Sears. Both books are a must read the stories are short and heart felt, and as I said before have some tissues near by. 

I hope that you are able to read at least on of these books as I feel like they have helped me get to where I am with the loving and acceptance of my Precious Piper.  Could that be a future book title? who knows...

31 for 21: Day 18 First Day of OT

Today was Piper's first day of OT, I wasn't quite sure what to expect. I had assumed OT would work on Piper's fine motor skills as one of the reasons why we requested Piper start OT is because she has a tendency not to use her pincer grip and she likes to sky hook items instead of holding onto them.
When the OT arrived she asked me if I knew what to expect I told her that I assumed she would be working on Piper's fine motor skills. She explained the role of an OT is to go over pretty much everything. So that is what we did.

She watched me play with Piper and made observation on what Piper can do. She asked me to take Piper's clothes off so she could see her muscles working while she was creeping, pulling herself to sit and playing. She explained that Piper's thumbs are hyper extended, which means we really need to work on Piper's weight barring on her hands. Working out on pushing up with her hands will would work out the different muscles on the side of her thumb and the other side of her hand, in turn it would work out her shoulder muscles. She showed me some great ways to help Piper push up with her hands in different positions, she really didn't like the side sitting position. Hopefully all this work will help her have the stamina to crawl further distances instead of face planting when she gets tired.

Apparently later down the road all this work with her pushing on her hands will help her with her handwriting, we will see when that milestone comes along. I'm not expecting her to be doing it anytime soon.

31 for 21: Day 17 Going the Distance!

Well I think I can let this video speak for itself and how proud I am of our little Piper!!

31 for 21: Day 16 Additional Complicataions Associated with Down Syndrome

As many of you know Piper had to have heart surgery last January, to repair three holes in her heart. One of the many common things that happens with children with Down Syndrome is a congenital heart defect. After successfully conquering that challenge, we have come across another bump in the road, and of course I find myself looking to my more experienced peers for answers.
See Piper has yet to pass a hearing test since she was born. They had to retake the newborn hearing screen as she failed the first time. We didn't find out that she failed that initial one until we received a bill informing us that they had preformed the test twice.  At first we were mildly concerned, as she was still making sounds and seem to be able to hear us, (turning her head to loud noises, and sometimes to her name) We initially just thought she was failing the hearing tests because it was partially developmental. Piper had to learn that she was supposed to turn her head towards the scary clapping monkey when it made a noise.
Our initial Audiologist finally decided that Piper she probably have a Baer done, a type of hearing test where they have to sedate her  and put electrodes on her head. So as we trusted CHOP with her heart surgery we decided to get this done at CHOP as well. Of course CHOP wanted us to see their audiologist and their ENT. Finally we have seen both the audiologist and ENT and they have decided that we should put tubes in her ears first to see if that solves the problem. So here we go luckily putting tubes in is a day procedure. However it means Piper can't eat all day.

31 for 21: Day 15 Piper's New Trick

So today Tini and I went to get Piper from her nap this morning and this is what we were greeted with...

I'm happy she is progressing, and that she can't actually climb out of the bed. However I think I might need to get teething pads for her railings before she carves teeth marks into them.

31 for 21: Day 14 Second Cousin!

Today Piper got to meet her second cousin, my cousin Megan. This is the first member of my extended family that has met Piper. See they all live in England and as we haven't gone over yet no one has met her.  Megan flew over to see her boyfriend who is living and working in NYC. So we (my parents and I) arranged to meet them for brunch in Hoboken.

We enjoyed a really nice brunch and we got to meet Robin, while Megan and Robin got to meet Piper.