Saturday, August 21, 2010

Year One Evaluation

Over the past 2 weeks, Brianna had her 1 year evaluation.



It went great. And then it went okay.



The first week Brianna's communication skills were evaluated. The great news is that Brianna is communicating at an age appropriate level.



The next week, Brianna's fine and gross motor skills were assessed. In a nut-shell, Brianna's at a 9-12 month level depending on the task. She's 13 months. For the first time, I had heard that Brianna is delayed.



Boo hoo, poor me right? I know there are so many worse things in life than my child not being able to put pegs on a board or be walking by 13 months. As much as I could rationalise it, I still felt bad...

Brianna has done so amazingly well over the past year that I have not had to deal with much of the negatives of Down Syndrome. When we received her diagnosis almost two years ago (when she was 12 weeks of gestation in utero), we were devastated. We then came to terms with what to expect, we came to a stage of acceptance. But then Bri was born, and she did well - with everything. Any possible thing that could have gone wrong with her didn't, or if it did, she was the best case scenario. To boot, she developed on par with the rate of typically developing children. Brianna has Down Syndrome, we know this. But she's not following the path one would expect of a child with Down Syndrome. At some point, I just decided that I would give her the same expectations of a typically developing child. And now, as of last week, I was given the news that she is in fact behind.

So what now? Do I accept that Brianna is going to be delayed because she has Down Syndrome?

Just as I started thinking heavily about all of this, Brianna laughed loudly catching my attention. I looked up, and there she was, flipping through the pages of one of her board books and laughing hysterically. Her laughter grabbed me out of my funk and put things into perspective. Brianna is a healthy, happy child. Extra emphasis on the HAPPY.

People often ask me how I stay so positive whilst having a child with Down Syndrome. Brianna is how. Brianna is always happy. Brianna is a fighter. There is nothing about her that is sad, or negative. She is not a defeatist.

So, am I a going to just except that Brianna is destined to be delayed? Absolutely not. I will use this imperfect evaluation as motivation to work that much harder to educate Brianna and be that much more dedicated to her daily therapies and exercises. I am revitalised in committing myself to know as much about Down Syndrome as possible so that I can be the best resource to Brianna that I can be.

A week after we had Brianna, a group of doctors specialising in Down Syndrome from the Waisman center visited us at the NICU. Throughout our meeting, they informed us that the average person with Down Syndrome ultimately levels off their education at that of a third grader. I remember looking up at them and firmly saying, "No, I will not accept that."

I will love Brianna and view her as perfect regardless of her educational level or other abilities. But I am her Mommy, and it is my job to fight for her. It is my innate duty to make sure that she has been given the best opportunities and the most firm foundation with which to build her life upon.

Monday, July 19, 2010

Milestones - Age 1

Brianna is an awesome little girl! We are so proud of all of the super-cool things she's doing.
At Age 1, here are some fo the fun things Brianna can do:


COGNITIVE MILESTONES
- Understands "No" and Simple Instructions


* Ex. Brianna can do many things with her Baby Doll when asked! If you ask her to feed her baby a bottle, she will. If you ask her to brush the baby's hair, she will. If you ask her to feed the baby with a fork, she will. The list goes on!




















* Ex. If you hold two objects in front of Brianna (ex. a Banana and a Phone) and ask her to give you one specifically, she will


- Identification
* Brianna knows sooooo much! When we read her books, if you ask her to point something out on the page, she will (ex. Flower, Door, Ice-Cream).
* We have a book with baby animals and their moms. If we ask Bri to show us the babies versus the mommies, she knows who's who
* Plays Games
Bri likes to crawl towards things she knows she's not allowed to touch (e.g. the garbage can). She crawls super fast and giggles when she's caught. I move her, and she does it all over again!
* Pat-a-Cake


LANGUAGE:
- Says: All Done, Mama, Dada, More, Doggie
- Signs: All Done, More, Eat, Milk, (Wave's Hi / Bye)



GROSS MOTOR SKILLS:
- Stands while holding onto things
- Pulls herself to standing
- Crawls (long distances, fast!)
- Sits alone
- Imitates other's activities
- Indicates with gestures




OTHER
- Feeds Herself (with spoon, foods cut up, etc)
- Feeds Herself with Cups and Bottles
- Colors with Crayola Baby Paints
- Stacks Blocks / Knocks Down
- Stanks Rings on a Pole







- Puzzles, puts them back in place

Thankful

THANKFUL

Having Brianna has made us thankful.

Thankful for every moment.

At just twelve weeks of gestation, we were told Brianna had less than a 50% chance of surviving our pregnancy. Three days later we were told she had Down Syndrome. For the next 6 months, we were thankful for each day that Brianna was alive.

It is true that we were initially devastated by the diagnosis of Brianna having Down Syndrome. However, being told that she was not expected to live put everything into perspective for us. By the time Brianna was born, we were so happy to finally meet our daughter that Down Syndrome was the least of our concerns. We were thankful to hold her in our arms. Thankful to finally meet our little girl.

The reality is that Down Syndrome brings with it a slew of possible delays and health complications. During our turbulent pregnancy, we had come to terms with all of this and prepared ourselves. We knew what to expect. Now, every time that Brianna reaches a milestone, we are thankful. Every time she has a positive doctor's appointment, we are thankful.

A year has passed since Brianna was born and not a day goes by that I am not absolutely overjoyed to hold her in my arms. That feeling has never faded. too often in life people take for granted their blessings and become overwhelmed with tedious negatives. As terrible as our pregnancy was, those 6 months taught us to be thankful for every moment we have with our daughter. No matter what life throws at us, we are able to put into perspective knowing our family is healthy.

As for Brianna having Down Syndrome, it has brought to our lives a new level of appreciation for all of Brianna's accomplishments.

Every day on earth that we get to spend together is a miracle, and we can't help but be thankful for our little blessing Brianna Rose.

Wednesday, July 7, 2010

A Week of Many Firsts!


On Saturday July 3rd, we celebrated Brianna's 1st Birthday! And did we have a reason to celebrate! Throughout our pregnancy we were given less than a 50% chance that Brianna would survive and were given the daunting prognosis that she would require surgery immediately after birth... if she would make it that far (more on that story later). Brianna not only has survived, she has conquered!


We began our week long celebration on Saturday, June 26th with a Birthday Party Extravaganza. Over 50 of our closest friends and family came to celebrate our miracle baby. Yes, I said over 50! Our little lady is loved by a lot of people! We were so happy to get to see everyone and share some great food!


On Tuesday, Brianna went to her First Brewer's game. She doesn't care for television yet, unless its watching the Brewers with Daddy - it's true!


On Wednesday, Brianna went to her first Concert on the Square. She loved it! Since she was the size of an orange in-utero, Brianna began listening to classical music. Upon being born, music became part of Brianna's daily lesson plan. Studies have shown that having babies listen to classical music promotes cognitive development, improving language and math skills later on... that, and its relaxing! So, we had our first family picnic on the Capital Square, listening to the Wisconsin Chamber Orchestra. Great food, great music, great weather - who could ask for a better way to spend an evening? Brianna was dancing, Cliff was eating, and I got to take pictures!

On Thursday Brianna had a VERY important First... she said MA-MA!!!!! I was picking Brianna up from Grammy and Grandpas, and she kept making the "muh" sound with her mouth. Jokingly, I said to her, "Brianna, if you say Ma-Ma, I will buy you some toys." Two seconds later, she shouted MA-MA! My brothers Jon and Ken and my sister Kaylene were all witnesses! We couldn't believe our ears! I quickly replied, "Brianna, if if you say Ma-Ma, I will give you Ice-Cream when we get home,"... two seconds later, she said MA-MA again! I of course held up my end of the deal, getting Brianna a few new toys and giving her a spoonful of organic frozen yogurt. Hey, I'm not above positive reinforcement! Brianna has been saying Da-da, All-Done, and More for such a long time now - I was definitely happy to finally hear ma-ma!

Saturday, July 3rd was Brianna's actual Birthday. We made our First trip to Toys-R-Us and let her pick out the toys she liked. One of the favorite toys she picked is a Jeep Liberty Renegade Baby Walker which she now zooms around our kitchen in. She also picked out a Baby Doll with a bunch of accessories. If you say to Brianna, "Feed your baby her bottle," she will do just that. She also knows how to comb the baby's hair, feed her with a spoon, and to give her kisses. We are so proud of our smart little girl! We then spent the day at Grammy and Grandpa's house enjoying Grandpa's famous shish-ka-bobs. Brianna got to blow out the Headless-Hockey-Player candle, a Fiala tradition. After such a fun day, we headed home to watch Rhythm and Booms from our front porch. Although Brianna enjoyed the fire-works, she was more concerned with caring for her new dolly.

Well, this was a rather long blog - but it was an eventful week! I promise to keep coming blogs more succinct. Have a great day everyone!

Introduction

I have wanted to start this blog for quite some time now... so I figured, today is the day!

My goal in writing this is to be a voice in the Down Syndrome community, sharing our family's unique story. Our Daughter Brianna Rose with diagnosed with Down Syndrome at just 12 weeks of gestation and the outlook we were given was grim. I wish someone would have told me then how amazing life could still be! I hope that perhaps this blog can bring hope to families receiving the diagnosis of Down Syndrome or other non-typical life situations.

I also hope this blog will bring to light that each baby is a baby, period. Each baby deserves to be loved unconditionally and cherished for his/her unique qualities. Because it was determined that my daughter had an extra 21st chromosome, many (medical professionals - and shockingly, a few of our closest friends and family members) recommended abortion. Had we listened to those naysayers, we would be missing out on the single most happiest part of our life.