Monday, July 6, 2009

Good Heart

At 22 weeks gestation, a Level II ultrasound indicated that fluid had accumulated around Clara's heart. The sonographer excused herself to find the perinatologist, who quickly confirmed the sonographer's concern. Shortly thereafter we were seated in the office of the perinatologist digesting the many possible causes of the pericardial effusion - chromosomal abnormalities, heart defects, a virus, cancer, unknown. The perinatologist then called Children's Hospital and expressed the urgent need for a fetal echocardiogram - we were told that they could see us as soon as we could get to the hospital.

We started that day with plans for an uneventful appointment followed by a lunch date at our favorite Greek restaurant. The level II ultrasound was scheduled as a precaution based on some medications that Ellen was taking. The same procedure had been performed during Ellen's pregnancy with Owen; therefore our level of concern going into the appointment was very low. Little did we know that we would find ourselves on the way to Children's Hospital full of concern for our unborn daughter.

We visited Children's Hospital several more times during the remainder of the pregnancy, becoming increasingly optimistic with each visit as the effusion reduced to two small pockets of fluid. Clara's growth and development continued to progress on track and no indicators of other potential problems were noted. Therefore, we began to believe that the cause of the effusion would fall into the unknown category.

Shortly after Clara was born we received the diagnosis of Down syndrome and our answer to what likely caused the effusion in utero. At one week old, we visited Children's hospital yet again for another echocardiogram, which indicated that the effusion had completely resolved and that no significant heart defects were present. The cardiologist noted that the PFO had not completely closed; therefore he recommended a follow-up appointment at three months old. Based on the results of an EKG and a physical examination at the three month appointment, the cardiologist indicated his belief that the PFO had closed; however, he recommended follow-up at one year as a precaution.

I am happy to report that Clara's one year appointment on June 26, 2009 resulted in a clean bill of heart health from the cardiologist. He indicated that everything looked and sounded normal and that Clara never had to come back to see him. While Dr. Wheller provided excellent care and advice during our unexpected journey, we feel blessed that Clara has been released from his care at such a young age without a single surgical procedure (knock on wood).

Tuesday, June 16, 2009

Giddyup Horsie!

Let's Go for a Ride!!

Giddyup Horsie!!

Yummy Ears!

Whoops, I Fell Off!

Monday, June 8, 2009

Happy First Birthday Clara!

I want some cake please!!

Yummy!!

Happy Birthday Girl!!

It is hard to believe that a year ago we were beginning to bond with you in the NICU while trying to digest your Down syndrome diagnosis. You worked your magic on us as we held you in that cramped space, looking up at us with you beautiful blue eyes and erasing our fears. You also worked your magic on the NICU staff and were rewarded with the nickname "Sleeping Beauty." On our early morning visit to see you the next day, we were greeted by a scrap book page lovingly crafted by that wonderful staff. It was a simple, yet extremely meaningful gesture because it was a recognition of Clara the beautiful baby girl rather than Clara the patient with Down syndrome. As such, we used the page as the first page in your baby scrap book.

As you have grown we have grown. At first, it was difficult to see beyond your diagnosis of Down syndrome. We spent those early weeks trying to learn as much as possible and to connect with other parents that had walked a mile in our shoes. As we introduced you to people we felt the need to add your diagnosis, largely to give ourselves the opportunity to talk about it. While your diagnosis will always be part of our lives, we have learned to see past the diagnosis to our beautiful baby girl. We are still happy to, and sometimes need to, talk about your diagnosis; however we no longer feel compelled to present your diagnosis to every one you meet.

Happy first birthday sweet Clara Rose!! We look forward to the many adventures that lay ahead of us as we continue to grow together.

Tuesday, May 19, 2009

Let's Go To The Race!

On Saturday May 16, 2009, we gathered with 45,000+ people at the Columbus Race for the Cure to celebrate breast cancer survivors and to remember those that have lost their battle. In particular, we walked in celebration of Owen and Clara's Grammy, Great Grandma Katie, and Great Aunt Tracy.

While the weather radar did not look promising when we left the house that morning, the showers broke up before reaching Columbus and we only felt a few minor sprinkles during the early part of the walk. Due to the size of the crowd and the size of the stroller, we decided not to try to fight through the crowds and left shortly after completion of our 1 mile family fun walk.

The fluorescent pink wigs in the pictures below were worn in memory of a local news anchorwoman who passed away in 2008 after a recurrence of breast cancer.

Pre-race picture time while waiting for the 5-k walkers to pass the starting line.

A view of the walkers at the halfway point of our 1-mile family fun walk.

The finish line!

Tuesday, May 12, 2009

On the Go!

For the past couple of months, Clara has been getting into four point position (hands and knees) with an apparent desire to be more mobile. Up to that point, her independent mobility had been limited to rolling with a little bit of squirming.

During her early experiments with four point, she would rock back and forth a bit before tiring and plopping on her belly. In March she started to try to move her legs forward, but would not move her arms in coordination. With one foot pulled forward under her bottom, the resulting shift in her center of gravity made it easy for her to transition to a sitting position. So, her method of mobility transitioned from rolling to roll, sit, flop, and repeat. Needless to say, this process is not a very efficient way to get to a desired toy.

Since March Clara relied heavily on the roll, sit, flop method of mobility, but would occasionally manage to sneak in one or two actual crawls before flopping on her belly. Each visit to the PT and OT began with the question "Is she crawling yet?". Within the last week Clara seems to have put all of the pieces of the puzzle together and is now putting several crawls together on a regular basis. Clara's OT and PT were very excited when she demonstrated her crawling prowess for them this morning.

For now, she needs to be motivated by something she desires that is out of her reach, such as any toy that Owen is using. Before we know it she'll be across the room in the blink of an eye. If she is anything like her brother, it won't be long before she is upright and cruising the furniture.

Tuesday, April 28, 2009

Pot of Gold

This was the view from our house last Monday evening. These rainbows were visible for several minutes, becomeing increasingly brilliant as the background clouds became darker.

Two for the price of one.

Soccer Season

Owen's first experience with organized team sports began this spring with soccer. Our expectations are pretty basic - run around and have fun while beginning to learn how to work as part of a team to accomplish a common goal. The added bonus is that he learning to be social with other boys that he has never met before.

At this age (3 and 4 years old), soccer generally consists of a pack of boys chasing the ball with a couple of stragglers trying to keep up. Since Owen is the youngest on his team, he is generally slower than the other boys and is often the straggler. While he wants to kick the ball, he also wants to pretend to be a train, or pay attention to all the people on the sidelines, or watch the cars in the parking lot, or...you get the idea. Owen is also a talker and likes to try to tell the other boys his view on how things should be done as they are running by him. While we try to keep him focused on the task at hand, all that really matters is that he is having fun while getting some exercise.


Kick Off!!

I'm Thirsty!

Is this game over yet?

Tuesday, April 21, 2009

Ear Tubes - Part II

About a month ago, Clara had ear tubes inserted based on the observation of fluid in both ears combined with hearing evaluation results which indicated moderately impaired hearing. You can read Part I of this story here.

This morning Clara had a follow-up hearing evaluation and a follow-up appointment with the ENT. I am happy to say that we received good news on both fronts. The ENT indicated that the tubes looked great and the results of the hearing evaluation indicated that her hearing was within normal limits. So, we won't need to see the ENT again for six months unless we notice problems (knock on wood).

Wednesday, April 15, 2009

Yee Haw Partner!

Since Nana only gets to see her grandbabies a couple times a year, she likes to do a little spoiling when she has a chance. During our recent vacation to visit Nana and Papa in Phoenix, we made a quick trip to this store so that Nana could buy a cowboy hat and boots for Owen. See the pictures below.

When we arrived back in Columbus, we were the last people getting off the plane (we have learned that it is easier to wait for everyone else to deplane when travelling with the kids). Owen was walking in front of Ellen and me, pulling his backpack, wearing pj's, sneakers, and his cowboy hat. As he approached the pilots and flight attendants near the cockpit, he took off his hat and gave an enthusiastic, "yee haw partner"! You can imagine their delighted reaction, especially at the end of a long day (11 PM local time due to an hour delay in Chicago). Given their reaction, Owen proceeded to repeat his performance several times in the baggage claim area while I was retrieving the car.

Owen modelling his new cowboy hat and cowboy boots while taking a picture of me taking a picture of him.

Looking cute in his hat during a visit to Tortilla Flat, AZ.

Nana couldn't resist the opportunity for Clara to try on big brothers new boots.
Clara trying on big brothers new cowboy hat.

Don't worry, Nana spoiled Clara too! Here is a picture of Clara's boots.

Monday, April 13, 2009

The Many Looks of Clara - Spring 2009

An Easter outfit and a silly face.

Wearing Mommy's sun visor.

Checking out the manatees at the Columbus Zoo


Happy to be outside in the swing!

Taking a break from a conversation with herself in the play gym mirror (her favorite pastime).