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!!