Better Late Than Never

Way back on June 6, Miss Clara Rose became a three year old.  It's hard to believe how quickly the years slip by.  Read on - pictures are at the end.

Throughout this past year Clara has become a proficient walker.  Wearing hip helpers throughout the summer months helped to develop and good gait by forcing Clara to lift her feet and bend her knees rather than shuffling her feet and/or waddling.  She wants to run to keep up with Owen and the other big kids, but can't quite get beyond a fast walk yet.  Keeping up with the fast walking Clara can be challenging - I am not sure we are ready for running Clara yet.  Santa brought Clara a mini-trampoline this year and she so desperately wants to jump, but can't quite get her feet off the ground.

Clara has become quite the climber, getting into and out of her booster seat on her own, climbing onto and off of furniture, and even managing to scurry up the steep play set ladder in the back yard.  One day, I walked into the kitchen to find Clara sitting on top of the table.  She has also become a proficient stair climber, going up and down stairs safely with little or no assistance.

Clara has made it her mission to make sure that all doors and drawers are closed at all times.  When she sees and open door or drawer, she will drop whatever it is that she is doing so that she can rectify the open door/drawer situation.  Now that she is tall enough to reach the regular utensil drawer, she declared that she will no longer use toddler utensils and insists on using grown-up forks and spoons.

We reduced the frequency of physical and occupational therapies and focused on speech therapy.  As a results Clara's vocabulary (including spoken words and signs) has increased significantly this year.  As with most kids this age, "no" is certainly Clara's favorite word and she uses it emphatically.  Want, mine, stop and all done are also some of Clara's favorite words.  She is beginning to be able to communicate her wants or needs to us, although those instances are limited to communicating her choice from a list of options (e.g., Do you want eggs, cereal, or toast to eat for breakfast?).  She loves Signing Time and requests (verbally and with signs) that we put an episode on anytime we go near the TV.

Clara has become increasing interactive with her baby dolls - pretending to feed them, trying to put a diaper on them, talking with them, and taking them for walks in a stroller.  Okay, so she has colored on a couple with crayons too, but just to make them pretty.  To be fair, Clara has also colored her own face with crayon mimicking lipstick application.

Clara's love of all books continued during her third year.  She will happily leaf through books for hours even if they have no pictures.  At church, Clara loves to page through the hymnal and bible, an activity that generally keeps her occupied for most of the worship service.

Thanks to our good friends Lynn and Diana, Clara attended her first year of Sunday school and this summer will attend her first vacation bible school.  We are eternally grateful that our congregation sees Clara Rose and not just her extra chromosome.  We are also thankful for our Pastor who recognizes the readiness of children to participate in Holy Communion. Ellen and I are fortunate to be at the rail to witness the passion with which Clara takes Communion.

Thanks to Nana and Papa, Clara made her first trip to Disney World this year.  As you will see below, she loved the characters she was familiar with from Disney TV.  She was curious about the princesses but a little hesitant to interact with them one-on-one.  Cinderella was clearly her favorite princess though.  After the first day, Clara decided she was done walking and we were glad to have the guest assistance pass that allowed us to use her stroller as a wheel chair.

Happy Birthday to Me!

The awesome cake created by our friends and The Ribbon Box

Opening presents with Owen standing by to help if needed.

Playing in the fountain at Downtown Disney.

I think Pooh was worried that Clara was going to share her lunch with him.  Piglet stopped by later to help Clara eat her green beans

Meeting Mickey at the Tusker House restaurant in Animal Kingdom.

Playing the drums at Animal Kingdom.

Checking out the view from our balcony at Kidani Village.

This was the only picture I got with both Owen and Clara looking at the camera.

Clara wearing Nana's hat while waiting at Soarin.  If you think she looks tired, check out the next picture.

Clara passed out with Nana shortly after leaving Soarin.

Clara had her first haircut at the Magic Kingdom.  As you can see, she was not thrilled with the process.

Fist Haircut Mickey Ears!

Being cute and showing off the new hairdo.

Almost every day at Disney ended with Owen and Clara passed out in the stroller.  We were extremely happy that we rented this City Elite double jogging stroller from Kingdom Strollers.

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!!!

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.

Bubbles!

Having fun with bubbles during our recent vacation at Nana and Papa's house in Phoenix, AZ.

Developmental Super Highway

During the past month, Clara's developmental progress has kicked into high gear. In addition to beginning to walk (see the previous post), Clara's ability to communicate has greatly improved. For those that don't spend much time with Clara, her verbal babble probably sounds like gibberish. However, it is apparent to us that she is trying to vocalize certain words with intent.

ah-gee = doggy

ah-duh = all done

muh-muh-muh = Mommy

da-duh = Daddy

ba-bee = baby

ki-kah = kitty cat

wee = wee (reserved for fun times on the swing during therapy and at home)

whoa = whoa (when the therapy swing goes too fast and she loses her balance)

up = up

Clara is also starting to purposefully use signs in concert with vocalization attempts. Her favorite sign is more. Since she first started to use the sign for more while she was eating, she seems to use the sign to tell us that she is ready to eat. We are working on the sign for eat and drink, but she prefers the sign for more at this point. She also purposefully uses the signs for all done, cracker, and yogurt. Clara waves at appropriate times to say hi or bye, and the girl is professional at blowing kisses.

During our IFSP meeting this week, one of the goals we established was to work with Clara such that she can communicate her desire when given certain choices. For example, at breakfast we will ask if she wants cereal or yogurt with the intent that Clara will learn to communicate her choice to us verbally and/or with signs.

Clara is also learning to do imitation play. On Saturday morning, she was sitting in her room with one of her baby dolls in her lap holding a small book in front of both of them and pretending to read a story to her baby. She was turning pages and babbling and having a great time entertaining her baby. She has also started to use random objects to pretend to brush the hair of her baby dolls. If she is playing with two dolls, she puts them together as if the two dolls were playing with each other in addition to playing with Clara.

On the negative side, Clara has decided that her job is to make the biggest mess possible if someone is not playing directly with her at all times. She will stand or kneel at a toy box and proceed to remove every toy by by immediately throwing it behind her. Keep in mind that she does not play with the toys before tossing them, she just grabs and tosses until the container is empty. Needless to say, Clara will be learning that cleaning up is part of her play time responsibilities.

Clara has also started to periodically hit. Generally she hits Owen when he is in her space or preventing her from getting what she wants. However, I have also seen her hit the dog and the sitter has said that she can sometimes be a bully with the other toddlers. Although she probably does not understand the concept, we have started to give Clara timeouts when we see her hitting. She is old enough to start learning that there are consequences for inappropriate behavior. Furthermore, it is important for Owen (and the kids at the sitter's house) to see that there is not a separate set of rules for Clara.

Step, Step, Step

For the past month or so, Clara has been toying with Ellen and I by taking steps while she is at our daycare providers house or while she is with our friend that takes her for treadmill therapy (refer to the last paragraph of this post), but not while she is with us. During physical therapy last Thursday (New Year's Eve), Clara finally showed Ellen and I that she could purposefully take 3 to 4 steps to get the toy she desired. It was also the first time she had demonstrated her skill for Jen, her PT at the Nationwide Children's Hospital Close to Home Center. Needless to say, it was a great way to end 2009 and we were all very excited.

Yesterday, our friend reported that Clara took ten unassisted steps prior to treadmill therapy, then proceeded to walk for 11 minutes on the treadmill. Considering that she started at two minutes with much complaining back in August, 11 minutes with no complaints was a vast improvement. After returning to the sitters house after treadmill therapy, Clara continued to demonstrate short bursts of unassisted walking. When she got home, she wanted no part of demonstrating her skills for Ellen and I, but eventually relented and showed us her stuff.

We have no expectations that she will be running around by the end of the week; however, this is a significant accomplishment for Clara and we are very proud of her.

Wildlights Part II

During our November trip to see the Wildlights at the Columbus Zoo we were limited on time and only saw the west portion of the exhibit. Owen was not happy to have his visit cut short and we promised him that we would return again before the end of the exhibit. In the blink of an eye, Christmas was over and we only had a few days left to squeeze in the return visit. Although the weather was a bit colder than in November, it was nice to view the exhibit with some snow on the ground.

View of the lights around the frozen pond just inside of the zoo entrance.

Clara all bundled up.

Owen displaying his rapidly developing "funny guy" personality. It is more fun to make a funny face than to smile.

Clara giving Owen a dirty look for being silly in her photo op.

Finally, a normal smile from the boy!

Better Late Than Never

It has taken a week and a half following Santa's visit to restore some sense of order to our house and I finally have a few moments to post. It seems like we just put the tree up yesterday but now it is at the curb waiting to be turned into mulch.

I suspect that this will be the last year that exhaustion will be able to restrain Owen's excitement past 6:30 AM. This year he figured out that if he got up to go potty frequently enough that he would eventually wake Clara up. Next year I suspect that he will try to conspire with Clara to formulate an early wake up strategy. I am about to receive payback for all those years that my brother and I woke up at 4 AM and tried to provide subtle hints to Mom and Dad that it was time to wake up.

Santa has been here. Let the chaos begin!!

Where do I start? This paper is too pretty to rip.

Santa delivered the one toy that Owen really wanted - the Fisher Price Shake n Go XTREME Speedway. Santa was nice to Mom and Dad and used Amazon's frustration free packaging, but had to add a picture since the contents are not visible on the box.

Ready for the inaugural race! Thanks Santa!

Eating breakfast amongst the clutter.

Strike a Pose

Wildlights

On Thursday night, we visited the Columbus Zoo for their Wildlights members-only preview night. This event grows more popular every year and even the members only night was very crowded. Since it is impossible to see the entire Zoo in one visit with a 3.5 year old and an 18 month old, we will visit several times to see all of the lights. By the time we ate some dinner and Owen finished the second of his trips to the potty, we had just enough time to ride the carousel and look at the lights on our way back to the exit.

Even with image stabilization, it is difficult to capture a photo that is not blurred without a monopod or other stable surface.

Bundled Clara unhappy to be trapped in the stroller.

Hi Baby!

Clara really enjoys baby dolls and stuffed animals. When she sees one her eyes light up and she gets a big smile, particularly if it is one that she has not seen for awhile. As you can see in the pictures below, she loves to give hugs and to have conversations which consist primarily of "hi baby" intermixed with toddler babble. We have to be vigilant when we are in settings where Clara can interact with real babies because she would like to play with them too.

Clara giving hugs to her baby.

Clara having a serious conversation with her baby.

Dancing with Clara

Clara and I recently had an opportunity to spend some time on the dance floor during the wedding reception of a family friend. While I don't want Clara to grow up quickly, I hope that someday in the future we will find ourselves on the dance floor again following her wedding.

May I have this dance?

Hey Daddy - is this therapy in disguise??

Cleaning House

Clara is relentless in her battle against dust.