Thank Goodness For Summer!

I feel like I keep making empty promises of keeping everyone updated on Piper and what she's getting up to and into. Now that it is summer I will actually be able to keep this promise!

So a quick update...
Piper started Swim lessons with her Daddy, she loves splashing her arms and kicking her feet. She hasn't gotten the hang of blowing bubbles, (she prefers to eat the water).

Piper has had a lot of fun at Day Care making beautiful pieces of artwork and new friends. The first week in May was Young Child Appreciation Week, each day they had different fun events. They had a Pajama day, they had pony rides another day and finished the week with a magician.

I celebrated my first Mother's Day with Piper and my mother, we had my parents over for a nice dinner.
and had to take the three generations photo.

We opened our pool for Memorial weekend and had some great friends over, Piper loved her new pool float and jumping in with Daddy.

 

As the weather has gotten warmer we have started our weekly friday grill nights with our neighbors. Piper has enjoyed being taken care of by Kaia. (Kaia is practicing for her new sibling coming in Sept.)

Now we will be going on our first family vacation on Sunday! I promise I will post where our travels took us and how Piper enjoyed it. 

Making New Friends

To celebrate Piper's 7 month birthday, we went to the Trisomy 21 new parent reception at CHOP. After being stuck in some unwanted traffic due to an accident and the Penn Races, we made it to the reception a little late.
It was really nice for us to meet some new families with children who have Down Syndrome. After listening to a few speakers we were able to introduce ourselves and share our stories. We met families who knew their child would have down syndrome during their pregnancy to parents who were surprised the day they were born. We met families where their child with DS was their second or third or even fifth child. We also met families where they were the only one. We met a family who had a set of twins with DS and a family who had twins where one had DS and the other didn't. We also met a family who had two 5 years apart who both had DS.
I guess my point is that there were all types of families and what I really took from this was that no matter what makes up your family, as long as you have a support system and love you can conquer anything life throws at you. Also that when ever you are feeling low all you have to do is look at the smiling face of your child and all those worries melt away. It was great to hear other peoples thoughts and feelings and know that there were other people feeling the same way.
At the end there was an informal time to chat with other parents, Sara took that time to see how many babies she could hold. Here is a picture of our new friend Sara "holding" Piper.

Busy Busy Bees

As I opened up my blog I couldn't believe that it has almost been a whole month since I last posted. We have been very busy at the Nolan household.
Firstly, I realized that I never posted any pics from the CAT Crew Polar Bear plunge, that took place on a very chilly Saturday in February. It was a great success we raised a lot of money for the Special Olympics.

March was such a lovely month weather wise which allowed Piper and I to take many walks with Tini. We also had a few visitors, Ronnie (Mark's second cousin) came up from Maryland and Anthony finally crossed the pond to see and meet Piper. However my maternity leave was coming to end.

Dropping Piper off for her first full day of day care wasn't as tearful as I thought it would have been. It was helpful that I was able to drop Piper off for a few hours the week before, which made the transition a lot easier. We are all very happy with our choice of day care center. Piper really likes her teachers Miss Jessie and Miss Jess, and I love that she is playing with other children, learning new things and making art.

                                           She sponge painted the letter P

The other great thing about Piper's daycare is that her Physical Therapist now visits her there. Which allows Piper's teacher to learn what to do with Piper during the rest of the week. On that note Piper is making her Mom and Dad very happy, with her development. She is sitting in her bumbo seat, high chair and working on sitting in the tripod position.

Another milestone, we started feeding her solids which has been a fun adventure needless to say. She likes rice cereal, oatmeal, bananas, pears, and sweet potatoes. She is not a big fan of peaches.

 Hopefully it won't be a whole month before I post again.

World Down Syndrome Day

Today is World Down Syndrome Day! A day to celebrate those who were born with an extra chromosome which makes them just that extra special.

World Down Syndrome Day (WDSD) was first established by Down Syndrome International and Has been celebrated since 2006, being observed in over 60 countries around the world.  The aim of the Day is to raise awareness and increase the understanding about Down syndrome, to promote the inherent rights and dignity of persons with Down syndrome to enjoy full and dignified lives and  to recognize the worth and valuable contributions of people with Down syndrome (DS). The Day also works to ensure the inclusion of people with Down syndrome in every aspect of their community and society, in general.  For more information about WDSD, visit www.worlddownsyndromeday.org.

I find myself writing in many posts, Before Piper I ... And yet again here I am writing it... Before Piper I never knew that these days existed (World Down Syndrome Day, Spread the Word to End the Word Day and the whole month of October, which is Down Syndrome Awareness Month). Piper has opened up a whole new world for me. I have talked about this new journey we are on, and all the twist and turns and forks in the roads that we have come across so far in her 6 months of life. It is very comforting for me as a mother of a child with Down Syndrome, that there are these days and organizations out there. They are a great resource for mothers like me, and it is wonderful that they are fighting for the rights of not only my daughter but everyone who has Down Syndrome.

As part of World Down Syndrome Day, there is the "Building Our Future" conference at the UN today where advocates will be discussing many important issues for people with Down Syndrome.
If you are interested you can actually see the confence live. http://www.worlddownsyndromeday.org/content/un-conference-live

I will be spending my day cherishing the life that Piper has brought to my family and I will also be attending "Raising Children with Special Needs in an Age of Exceptionality", an evening with Amy Julia Becker, a local author and friend. Speaking for myself I don't know how I would have been able to navigate this journey without the help and support from my local down syndrome group. I appreciate everything that Piper has shown me about this world and look forward to every step along this journey.

So to everyone out there in blog land take some time today to educate yourself or someone you know about Down Syndrome and Happy World Down Syndrome Day.

Spread the Word to End the Word

Today is Spread the Word to End the Word Day. A day where people pledge to stop using the R-word. I will admit before Piper I had thrown around the R-word, not knowing its true affects on other people. I didn't use it all the time and personally wasn't offended when I heard other people use it or see it being said on tv or in the movies. I made a conscious effort not to use the R-word, when I met Colin and Colin's family. Getting to know them I realized how hurtful the word actually is. Since having Piper, I have gained a new perspective on the word from a personal level.

I watched the movie, "My Idiot Brother" earlier this year. I rented it because I am a big fan of Paul Rudd and usually like the movies he is in. This was the first time that I was really offended by the R-word and actually couldn't watch the rest of the movie because of it. Since then I have seen many campaigns for getting rid of the r-word. I think that educating people about how the word affects other people is very important.

Please stand up with us to end this word. Check out www.r-word.org and pledge to eliminate the word. Check out this video and others like it on YouTube.

 You can also check out this clip from Good Morning America.
Good Morning America fight against the R-Word

Count Down to Day Care

The count down has begun, well actually the count down began a long time ago but now it has really hit home. Today we officially enrolled Piper into day care. I have had the papers filled out for sometime but have been pushing back the actually handing them in part. I knew it needed to be done, but felt like if I procrastinated long enough it wouldn't come time to actually drop her off. It will be a big change in our lives.

It has made me wonder how mothers, can go back to work after only 6 weeks. You have barely gotten yourself back together after having the baby. Forgetting the sleepless nights and all the hormonal changes, but you have just gotten to know your baby and now you have to leave them in day care and go back to work. I have been very lucky that my 6 weeks has actually been 6 months. I am very grateful that I got the 6 months. Mind you if I hadn't taken the 6 months it would have been really hard during Piper's surgery and recovery.

In this time, I have been able to see her grow as far as she has. I see her learning and exploring new things everyday. That is one thing I will really miss when she goes off to day care. I'm not worried about dropping her off, as I feel comfortable and confident in the staffs ability to take care of Piper. I'm worried that I will miss out on some huge milestone break throughs.

She is currently trying to crawl, she really wants to move however doesn't quite have the coordination down yet. She will lift up with her arms, push off with her arms moved her legs forward then... her arms get stuck by her side and she starts to life her body making her look like a hood ornament or one of those figureheads on the bow of a ship. It's awfully cute when she does it. We are currently working on getting those arms to do their job during PT. I am worried that she will learn how to crawl in day care and I will miss it. So when she does learn how to crawl, and I see her do it, I will just have to pretend that she is doing it for the first time.

The positive side of her going to day care is she will be learning how to be around other people. Which means hopefully she won't get too upset in the future when we leave her with a baby sitter (other than my parents). She will also learn to play with other babies. And I am most looking forward to her learning sign language, and of course I will be learning as well.

So after we dropped off the papers, I requested we visit the classroom one more time. When we did, I got to meet her teachers again, as well as her new classmates. They had already given her a cubby, and a crib and had labelled them. They were all ready for her arrival. I just need to get myself ready for the big day.

What is Normal?

I've always wondered what "normal" actually is. The day Piper was born we found out that she had Down Syndrome. Instantly she would face the label not "normal". We were told that she most likely wouldn't develop like other "normal" babies. Hearing this as a parent is hard. Every parent wants the best for their child. I would love to disprove anyone who thinks Piper isn't "normal".

Since Piper's surgery she has been smiling, laughing, talking (in her own fashion) and teething. She is also working on sitting up and crawling. She is acting like any "normal" baby especially now that she is waking me up in the night to be fed. There are times when I forget that she has Down Syndrome; I forget that she had three holes in her heart, because all I see is a happy smiling baby staring back at me. I must say I love those big old gummy smiles.

Children who have Down Syndrome tend to have more medical complications than "normal" children. I belong to a Down Syndrome support group where three of the babies Piper's age have all had open heart surgery and a few of the older kids have had surgery to place tubes in their ears to counter hearing loss. Putting all these medical issues aside, all of these children are loved. Through the highs and the lows none of the parents regret having their child with Down Syndrome.

Many find their children a blessing, so it is hard to accept that there is a new "safe" test to eliminate future babies being born with Down Syndrome? The new blood test, MaterniT21, checks the fetal DNA present in the mother's blood for the extra copy of the 21st chromosome that causes the most common form of Down syndrome. Those promoting the tests claim this is a safe test, safe for who is the biggest question I ask. Certainly not safe for Piper or any other children, born or unborn, with Down Syndrome. It is claimed the test is safer then an amniocentesis, which can in rare circumstances cause a miscarriage, however my concern (largely because ths test can be carried out ealier than traditional genetic screening tests) is that someone who receives a "positive" result from this new test is more likely to terminate. So to me, it doesn't feel very safe for an unborn baby with an extra chromosome.

I worry where it will stop. Will people terminate their pregnancies because their unborn children might have other learning or developmental disabilities? The point is that there is a reason why people are different. It is diversity that teaches us compassion and empathy. Without differences I don't want to think where we would be as a society.

So Piper isn't "normal" according to some people but if being different or unique, as we all are, is "normal" then her extra chromosome makes her as "normal" as can be.