SONJ Jingle All the Way 3K

Today we participated in our first Special Olympics of New Jersey Jingle all the Way 3K. Instead of being in the competitive race we decided to register the whole family for the fun run/walk so we could be together.  We got Piper all ready in her jogging stroller, had our race bibs on and were ready to race. There were around 500 participants in total.

 

After the race they had an entertainment group singing and dancing, Piper was mesmerized. Too top off all the fun had by all every participate under 10 received a medal, Piper of course thought it was just another thing to chew/suck on.   

31 for 21: Day 29 Riding out the Storm

The following was written and attempted to be posted before we lost power due to hurricane Sandy: -Yes we still have power, for how long I'm not sure. After spending all day inside watching the news and watching Sandy creep closer and closer to us. We started to get cabin fever, well Piper did she was getting quite cranky. We decided to make the trek over to our neighbors who live two houses down.
We drove because there was no way we were going to get piper there in her stroller. While we were pulling out of the drive way we noticed that one of our side tree had snapped in half and was blocking the sidewalk. Needles to say once we got to our neighbors Mark wrangled them up to help move the tree to a safer space.

The first tree that fell victim to Hurricane Sandy, in it's resting spot

Once we got there Piper was no longer cranky, I guess she just wanted to get out and see some other people and play with some other toys.

 At one point there was an impromptu dance party in the kitchen which with the help of Daddy, Piper joined in.

After eating dinner and the gailing winds outside I thought it was time to make our way back home.





While watching tv, Mark and I heard a load boom. Mark grabbed a flashlight to see what caused the boom to find out that out 20+ year old spruce had snapped in half and fell away from the house, luckily.

The Spruce that fell away from out house

As the winds got stronger and stronger the other tree outside our house had two considerable crack on the sides of one of the big branches. We watch safely in the house as the winds blew the branch ever which way, until it fell away from the house. Allowing us to go to be knowing no trees would come crashing into our bedroom. 

The destruction of two trees

The other tree that thankfully fell away from the house aswell

What our house looks like after the storm, a few shutters lost and a tree that needs to be cleared.

The large branches that fell off of trees in the backyard

Of course it took until late the following monday night for us to regain power. And today was the first day I was able to access my wireless hardrive that had all my photos. I hope everyone else survived Sandy.

31 or 21: Day 28 Ann Coulter vs. Everyone Sane Person

As there are only a few more days left of Down Syndrome Awareness Month, I came across this and thought it is a great representation of Down Syndrome Awareness.

http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/

I will admit that after reading it, I had to actually see what Ann Coulter tweeted. And just like John Franklin Stephens I couldn't believe she would say that.

Since her comment many people in twitter land have spoken their minds about what she has said. And many have referred to what John Franklin Stephens wrote.

Recently she tweeted that she would not apologize for what she said about the President in her tweet. I feel like it is people like her that are so narrow minded and don't care how their words effect others are the ones that we really need to change however I'm not sure how easily it would be.

31 for 21: Day 27 Generations

Today my mother, myself and Piper took my Aunt Elspeth and Mormor (Grandmother) to New Hope. We had a wonderful walk around stopping in a few shops and having a very eclectic lunch. The menu had "American", Mexican and Thai food, in a place like that I never know which food will actually be the safe bet, as they can't all be good.

As we strolled down the street so many people commented on how cute or pretty Piper is, a few even struck up more of a conversation asking how old she is and her name, trying to connect to a family member of theirs. I wonder when I take Piper out if people see she has Down Syndrome, or think shes a cute little girl but there is something different about her.

I wonder what it will be like when she gets older and it is more "noticeable" that she has Down Syndrome, but for now I'm not going to worry about any of that and just enjoy the girls day out we just had.

31 for 21: Day 26

Sorry for the really short post. Piper got to meet her great grandmother and great aunt today, which means we had a very busy day. Needless to say we are all wiped out. We are off to New Hope tomorrow so I will post some pics and talk more about our day.

31 for 21: Day 25 Halloween Party

Today we went to a Halloween party at the library with our neighbors. They had a hayride to a "pumpkin patch" in reality it was a bunch of pumpkins strewn across a soccer field.

The Fox Chase Kids minus Quinn

Happy Daddy made it.

There was a haunted room, which we didn't bring our little ones into, they also had a place to decorate our pumpkins however as it was time for dinner for everyone we all decided to go home.

And when we got home Piper's great grandmother and great aunt had arrived, of course a little too late so she will get to meet them tomorrow.

31 for 21: Day 24 The R- Word

On Spread the Word to End the Word Day, (3/7/12) I wrote a posting about how I used to use and hear the R- word and not really have a problem with it. The other day I over heard someone using the word, they weren't initially using to insult someone it was one of those not really thinking times. He didn't know that I have a daughter with Down Syndrome. Because it wasn't said vindictively I wasn't sure if I should say something. I thought to myself I don't want to be little this person just educate them.

So I dove in and asked him if he really felt like a retard and if he actually knew what implications that word has on other people. At first he took it as me lecturing him, which wasn't really want I wanted. I explain that people who have Down Syndrome and their loved ones do not like the everyday misuse of the word. In the end I think he appreciated me informing him, if not at least he will rethink the next time he may use that word.

31 for 21: Day 23 Adventurous Little lady

So last night while trying to chill out with Piper before her bed time, instead of relaxing and winding down someone decide to me adventurous. Needless to say I was on one hand very proud of her on the other very worried that we needed to bubble wrap the house for this little lady.

31 for 21: Day 22 1 Year Anniversary!

A year ago today I started my blog and made my first post. I just read it to see how far we have come in a year. It was a very touching post, which allowed me to get a lot off of my chest about how I was feeling and what we were going through as a family on this hard road to parenthood.

I look back and think I didn't know what was on our horizon. Of course then I didn't know Piper would need open heart surgery by her 4 month birthday, and will soon be needing tubes in her ears. I didn't really know what Early Intervention was all about. I didn't belong to the Down Syndrome group where I have made some great friends.

But now a year later, Piper's heart is healed (still keeping an eye on the hypertension). She has a great team from EI, that provide her with Physical therapy, Occupational therapy, Speech therapy and Developmental intervention, which keeps us busy during the week. They have also become part of our family as well.

In a year we have grown a lot as a family. Piper amazes us each day with what she can and wants to do. It is not what I had expected, Piper is like any other 1 year old she just happens to have Down Syndrome and that's the way I like it.

31 for 21: Day 21 Trying New Foods

One of the many complications that parents face with children with Down Syndrome is feeding issues and this is a broad spectrum. Feeding issues could be due to low muscle tone and their inability to keep food in their mouths, some suffer from gastro-oesophageal reflux, others may just not like the texture of certain foods. 

Now at the beginning (starting solids) Piper did have difficulties keeping the pureed foods in her mouth, she would always push out what I put in with her tongue. I would spend most of the feeding time shaving the food off her her face and putting it back in. Our DI/ Speech therapist showed me some pointers to help Piper keep her mouth shut. After a while she got better and so did I. Recently we have been trying more and more actual solid foods and I have noticed that she does a better job of keeping the foods in her mouth and actually chewing, even though she only has two teeth. 

This past weekend we have been trying more and more new foods, playing with textures and food that Mark and I would actually eat. Friday for lunch she had spegetti o like things, to much surprise of my mother the food wasn't all over her face and in her hair. I guess I was a really messy eater as a baby. Friday night we went to our friends house and had homemade pizza which Piper got to enjoy a little cheese pizza just for herself. After the fly show last night we went to the Ship Inn in Milford (an English style Pub) and I ordered Fish and Chips and shared my fish and Mushy Peas with Piper. I was quite impressed by how much she actually ate (pic of the remains below). This morning (sorry no pic :( ) Piper had eggs, bacon and baked beans for breakfast. And finally for dinner Piper shared my ravioli with me. 

I'm so happy that Piper its willing to try these new foods. I hope we continue with this success and don't hit a bump in the road I feel really blessed that Piper doesn't seem to be struggling with eating as I know it can be a very stressful thing for a parent to have to go through.

Yummy Fish

Can't wait to eat the mushy peas

The remains of the fish and peas, She did a great job.

Moments before the ravioli ended up on her tray, but it all ended up in her belly!

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.
 

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.