Clara's Many Looks - Summer-Fall 2010

Playing in the sprinkler.

Lounging around during our Father's day weekend camping trip.

Is it our turn yet?

Happy 2nd Birthday!

Checking out the fish in the new Polar Bear area at the zoo.

Camping with Grammie and Grandpa on the 4th of July.

Future Rock Star!

Go Buckeyes!

Hooked up and trying to breathe in the PICU of Akron Children's Hospital thanks to an asthma attack.

Enjoying some "agritainment" at the MAiZE.

Having fun at the 2010 Buddy Walk!

Making silly faces at Aunt Amanda's baby shower.

Buddy Walk 2010 - Team Clara's Clowns

On Sunday October 3, 2010, Tam Clara's Clowns ventured out to the Buddy Walk on a cool, breezy, gray day to celebrate and support Clara and all individuals living with Down syndrome .  We appreciate all of our friends and family that dedicated a few hours of their day to walk with us.  Our third Buddy Walk was extra special because Clara had a chance to show off her walking skills this year.  With the exception of a few short rides on Daddy's shoulders, Clara completed most of the walk on her own two feet.

Do you think she was enjoying herself?

The camera on my phone has a delay before it snaps the picture and Clara kept walking toward me before the camera would snap the picture.  As you can tell, it was a fun game for her.

Clara was smitten with the cheerleaders.  I think they were smitten with her as well.

Clara decided that the pom-poms made good soccer balls.  She would shake it a bit then drop it on the ground to start kicking it.

Team Clara's Clowns 2010.  Clara is busy watching the cheerleaders who were just to our right.

Labor Day Asthma Attack

On Labor Day, Clara took her first, and hopefully last, ambulance ride, lights and siren included.

Our intent was to spend an extended labor day weekend relaxing and visiting with family in northeast Ohio.  After our family trip to the dentist Friday morning - cleanings for Ellen and Owen, an attempted cleaning for Clara, and a root canal for me - we loaded up for our road trip.  When we arrived at Grammy and Grandpa's house, Clara had a runny nose.  The kids have been back at school for a couple of weeks so it was not surprising that Clara would be getting a cold. 

The runny nose continued on Saturday and Sunday, with the addition of a mild cough.  With the exception of sleeping poorly at night, Clara was playing, eating, and napping normally.  Throughout Sunday night, Clara's breathing became more labored and she was having difficulty sleeping.  She was restless and was only staying asleep for short burst before startling awake. 

In the past, when Clara has had difficulty breathing associated with a cold, we have given a couple of puffs of albutirol from an inhaler that was prescribed when she had bronchiolitis when she was six months old.  We had discussed this treatment approach with her pediatrician and received acknowledgement that the approach was appropriate.  Since we rarely had to use the inhaler and Clara did not start with the runny nose until after we left the house, we did not have the inhaler with us.

On Monday morning, Clara was running a fever and was visibly having difficulty breathing; however she was alert and sat with us to eat some eggs and drink some juice.  Since we did not have the inhaler and Clara was running a fever, we decided to take Clara to urgent care thinking that she would have a breathing treatment and that we would go on with our plans for the day.  After waiting for two hours, Clara was called back and hooked up to a pulse-ox meter.  The meter indicated that her oxygen saturation was 71 percent.  Since Clara was not exhibiting symptoms typical of reading that low (e.g., blue coloration), the nurse used another meter based on the assumption that the first meter was not accurate.  The second meter provided the same reading; therefore, Clara was connected to a supplemental oxygen supply and given an albutirol nebulizer treatment.  Following the treatment, her oxygen saturation only increased to 76 percent with the supplemental oxygen and her heart rate increased to 200 beats per minute; therefore, an ambulance was called to transport her to the emergency room.

Following some discussion between the urgent care physician, the ambulance medics, and Ellen, a decision was made to transport Clara to the emergency room at Akron Children's Hospital.  Supplemental oxygen continued to be provided via nasal cannula, which Clara ripped of at least half a dozen times.  Additional albutirol nebulizer treatments were also conducted.  Once she was stable, a chest x-ray was taken which ruled out pneumonia but indicated that Clara's lungs were hyperinflted.  The ER physician indicated that Clara was likely hazing an asthma attack and that her lungs were hyperinflated because ahe was not able to effectively move air out of her lungs.  Based on this information, Clara was given an oral dose of steroids (fun experience with an already ticked off, strong, extremely flexible two-year old) and a dose of magnesium through an IV.

After almost four hours in the ER, Clara was admitted to the pediatric intensive care unit because her oxygen saturation had been so low and her heart rate had been so high.  Although she was exhausted, she was not happy about being wired up and confined.  Throughout the night, they were able to slowly reduce the supplemental oxygen without negatively impacting Clara's oxygen saturation.  Clara is a restless sleeper and tosses and turns throughout the night.  Tossing and turning does not work well with multiple wires and hoses, so Ellen and/or I were awake often trying to make sure that Clara did not end up with cords tangled around Clara.

On Tuesday morning, Clara was transferred to the general care floor.  While awake, her oxygen levels were good and stable, even without the supplemental oxygen.  However, when she was sleeping, her saturation levels would drop below the specified range if she was not attached to supplemental oxygen.  Since she had ripped the nasal cannula off so many time previously, we decided to leave it attached rather than removing it and reconnecting it for nighttime monitoring.  However, Clara was allowed to walk the halls and to get on the floor and play.  During her walks, she decided that she needed to visit any patient with an open door to say hi.  Anyone walking the halls also got a bright and cheery hi!   

Happily, Clara made it through Tuesday night without the need for supplemental oxygen.  She was disconnected from all tubes and wires and had freedom to roam and play.  If her room door was open, she wanted to be out in the hall and visiting the other patients.  Let's just say that it is hard to resist a cute two year old giving you a bright and cheery hi accompanied by an equally cute wave. 

As we were packing up and waiting for the discharge papers, Clara was sitting on the floors with two of her dolls having a little conversation.  During the course of her conversation, she would occasionally point to the door of the room and utter a clear and excited bye-bye accompanied with her cute bye-bye wave, as if she was explaining to her dolls that they were all getting out soon.

While I hope to never have another emergency experience with our kids, I am glad that we are now aware that Clara has asthma.  We are prepared to deal with asthma occurrences before they become dangerous and we can coordinate her regular medical care with appropriate medical professionals.  Others that care for Clara in our absence will be aware of her condition and will be equipped to provide care in the event of an attack.

Toddler Bed Mischief

A couple of weeks ago, Clara figured out how to climb out of her crib.  We are not sure how she did it or how she managed to not get hurt.  We heard a thump, then Clara was babbling at the gate at the top of the stairs - no screaming or crying, just like nothing had happened.  To avoid any repeat adventures and potential injuries, I converted the crib to a toddler bed the next day.

While Clara will go down for naps with little protest at daycare, she has apparently decided that naps at home are no longer acceptable since she can get out of bed at will.  After reading some books followed by some rocking we put her in the toddler bed and sit with her for a few minutes to help her get settled.  She will stay in bed if someone stays upstairs, but if she sees us going down stairs she is out of bed immediately.  We have tried to give her some time to settle down and get back into bed; however, she has decided that throwing her books down the stairs is a great way to get attention.  Her book throwing routine is deliberate and thought out.  She'll walk to her room to get a book off the shelf, carry the book to the gate, shove the book through the rails of the gate, and repeat.  If  book throwing fails to get us back upstairs, she proceeds to empty the contents of her dresser drawers.

Oh the joys of the terrible twos.

Gross Motor and Speech Skills

Clara is making great progress with both gross motor and speech skills.  She is now walking full time and is developing enough balance and confidence to step over objects in her path.  She really wants to run so that she can keep up with the other kids and loves to try and chase us down if we pretend to be running away from her.  In addition to walking, she has become a pretty good climber.  She can climb onto and off of chairs and couches and will attempt to climb up Mommy and Daddy, especially if we are eating a Popsicle or ice cream.  Unfortunately, Clara also figured out how to climb out of her crib Saturday night.  Needless to say, her crib was converted to a toddler bed on Sunday morning.

Coincidentally, Clara's newest favorite phrase is "uh-oh".  She can imitate sounds of certain animals when asked - the elephant is her particular favorite with a pretend trunk added for good measure. She is also beginning to communicate her preference when given choices.  For example, at snack or meal time we will ask if she wants one item or the other (e.g., apple sauce or yogurt) and allow her to communicate her preference.  Her vocabulary consists of a mix of signs and spoken words, although it seems that she relies on signs for words that are difficult for her to speak.  She will clearly pronounce words such as Daddy, doggy, kitty, and book but generally doe not use signs for those words.  In contrast, she will sign words such as eat, more, and bath without verbalization.  With words such as fish, yogurt, and baby, she will both speak and sign the words.

It is fun to watch her personality develop before our eyes.  She desires to be independent and will make us aware of her displeasure if we try to help her with tasks such as feeding.  She loves live performances, puppet shows, plays, music, etc.  Our church youth group recently performed a puppet show sermon and Clara was enthralled.  She often starts dancing when she hears music and offers exciting applause at the end of a performance.   Yesterday she spent an hour having an animated pretend conversation with two of her dolls. 

When we are out an about, Clara loves to wave and say hi to everyone, and gets many smiles in return.  She is an ambassador of happiness and thrives on those smiles that she receives in return.  Thank you to all the wonderful people who see and compliment her beauty and not the visible characteristics of her diagnosis.  While I fear that reactions will be different as Clara grows older, in these moments I am filled with hope as Clara's mere presence brings joy to the hearts of complete strangers.

Clara can also be quite mischievous.  She loves to empty out toy bins and open cabinets, and will take every book of the shelf if you are not paying attention.  Most recently, she figured out that she could open the toilet lid.  In her mind, she had discovered a big bucket of water and decided that it was play time.  Even though I was standing right beside her, she managed to get her arms and hands into the water before I could extract her from the situation.  After a  Lysol wipe and GermX cleaning, I spread the word that bathroom doors had to remain closed at all times.

Fishies!!!

Happy Birthday!! - Clara's New Kitchen

Playing in the Sprinkler on Hot Day!!!

Camping

On Fathers Day weekend, we packed up the car (as full as we possibly could) and headed north to East Harbor State Park for three nights of camping fun.  After receiving 10+ inches of rain in the first half of June, we were fortunate to have three nights without any precipitation, other than the hoards of mayflies.

We checked in and set up on Friday afternoon, then spent Saturday afternoon at Cedar Point.  It comes as no great surprise that Owen likes thrill rides.  He did not hesitate to get on any ride, including some of the bigger spinning rides like the Monster.  Clara also enjoyed the rides she was able to ride.  It was a long, hot day, but the kids did very well.  Fortunately we were able to take a break during the middle of the day at Soak City to cool down and relax a bit.

Set up on site 34A in the no pet, non-electric portion of the campground.  As you can tell, it was not a busy weekend.

Clara lounging in her camp chair while we set up.

Apparently, setting up camp is boring for a two year old. Don't ask me how she managed to get herself turned around without tipping the chair over.

Waiting in line for the boat ride at Cedar Point, and happy to be out of the stroller.

Owen did not hesitate to get on a single ride during his first trip to Cedar Point. 

Owen in front of the Marblehead Lighthouse.  We had not yet discovered all of the cool rocks that he needed to climb on.

Owen and Clara on the cool rocks at the Marblehead Lighthouse.

Owen checking out Lake Erie at from the Marblehead Lighthouse.  He kept referring to the lake as that "big pond".

Another Buckeye Football Fan

Clara - March 2010

Owen - May 2008

Motorcycle Bike

When it finally warmed up enough in March to get rid of the February snow, it was time to get Owen his first two wheel bicycle (not counting the training wheels). He had been practicing on a two wheel bike during the winter, riding in our daycare provider's basement. His winter testing in the basement peaked his desire for a motorcycle bicycle (Owen's words) of his own.

When daylight savings time started, I knew that the after-dinner requests from Owen to play outside and ride bikes would begin. It was time for Owen to have his very own motorcycle bicycle. It was dark by the time I got home with the bike, but Owen insisted that he had to test drive it in the kitchen.

We have been on many trips around the block since then. After the first couple of trips, I decided that I needed to be on my bike also because I was getting tired of sprinting to keep up. Riding behind is an adventure in itself because Owen likes to come to a dead stop at random moments to look at something on the sidewalk or to tell me a random story about his day.

Gymnastics

During January and February, Clara had great fun participating in a Kidnetic Energy gymnastics class. Kidnetic Energy is a non-profit organization in central Ohio that offers dance and gymnastics classes specifically for children with special needs. Clara was reluctant during the first few classes, but she slowly came out of her shell and started to enjoy participation in the various activities. She is currently enrolled in the spring class and becomes more daring with each class.

Our thanks go out to the instructors, volunteers, and the facility for the generous donation of their time and space to create safe and fun activities for Clara and other children with special needs. Follow the links above to learn more about the organization.

Working on the balance beam.

Rolling down the hill

At the end of each class, each child receives stamps on their hands and feet. At the end of the last class, each child received a medal. As she does with most items, Clara proceeded to chew on her medal.

Do I Have Something On My Face?

Self-feeding some shredded chicken during lunch prior to Owen's fourth birthday party.