Black eye, strep and up coming IEP meeting

Hello all, well 2 Thursdays ago little miss Clara Rose was practicing her stair climbing skills at the sitters and fell (potentially with the help of her buddy Chase, although he said he did not help her, but his mom is suspicious). Anyways, she fell just right that she hit her eye (well, right under her eye) on the bottom of the spindle (that is the hypothesis for where she hit). As soon as Beth (our day care provider and Chase's mom) got to her she knew it was going to become a nice black eye, which is has been. Later that morning while at play group with Grandma Lynn she also managed to hit her cheek on the corner of a table, thankfully that did not leave much of a mark or else people would really have been wondering what happened. On Sunday evening, she started with a fever, the first thing that came to my mind was strep as she also was not interested in eating (not even applesauce or yogurt which are 2 of her favorite things). So off to the doctor we went Monday morning (after I called Beth to see if her daughter Katelyn had strep since usually she gets it then Clara may or may not get it, Katelyn however was feeling fine). As soon as we were called back to the exam room at the doctors the nurse went ahead and swabbed her throat and by the time he was finished getting all her states, the strep test was positive. I have to tell you this, when Brian (the nurse) went to get the cuff out to check her blood pressure she immediately held her arm out in front of her (with a big smile on her face) so he could put in on, just like a pro :) It was very cute. Once the doctor came in she asked about her nice shiner which was clearly not what I was there for but what ever. I stayed home with the kids on Monday and Grandma Lynn was able to come over and watch the kids on Tuesday so that we could make sure Clara was not contagious before sending her and Owen to Beth's on Wednesday. Thankfully, no one else has gotten strep...just the head cold that Clara started with at the same time!!!

Now, onto the up coming IEP meeting. On Tuesday we have are first meeting regarding Clara going to pre-school next school year and to start the IEP process. I think I am a bit at an advantage compared to some parents starting this process, not because I have any background in special ed or anything (because I do not) but because here in Union County Ohio the Union County DD runs their own pre-school for kids with special needs. It is a great program and Owen has been going there as a peer model this year and went there last year as well. Why do I feel this is an advantage, well, I do not have to start to deal with a school district and what they want to do or think is easiest for them. The staff at Harold Lewis is all about the kids and making sure the students get the best start possible in school. However, I am still leery of starting this whole process, I think it is impart because my baby girl will be starting school and in part because I know this is just the beginning of IEP's and everything that goes with it. I have already laid done 1 ground rule, I refuse to sign the IEP without having sufficient time (I have told them 1 week) to review it and do some of my own research to make sure I agree with what they are saying or wanting to do or to make changes. I have told this to our current service coordinator (Erin) who will be involved in the IEP process and transferring Clara from the early intervention program to the pre-school program. Although I do not really feel I will need that extra time while Clara is at Harold Lewis, I have decided that I am going to set it as a standard operating preceder when it comes to the IEP. If anyone has additional ideas or tips on IEP's I would love to hear them (or I guess in reality read them :))

Help Bring Yana Home

For the past several months I have followed a number a blogs of families who were in the process of adopting a child with Down Syndrome or had recently completed such adoption. One of the blogs I have followed is for the adoption of Yana , a beautiful little girl in Eastern Europe (http://www.savinganangel.blogspot.com/). Her family has really struggled to to gather money to pay for her adoption. They have multiple fundraisers going on including Puzzle Pieces, Coffee Sales, T-shirts. They have also had garage sales, and raffles for different items such as Pampered Chef items and book, but still are in need of $13,000 to complete the adoption. They are finally getting close to traveling (the process has been a bit longer than many others due to the region/country where Yana is at). To help in this effort another family is offering several items in a drawing including a brand new Xbox 360 Kinect. Please go to Lisa's Blog (Living in the Light) and simply make a donation to Yana's adoption and leave a comment (this is your entry). Yana deserves to be home with her family, and the other kids with special needs in her region are depending on her adoption to be successfully completed so that they may have the oppertunity at finding a forever family.

Almost Five..Correction, he is Five

I started this entry the beginning of this past week and never had time to finish it. so now need to change what a started and finish it. :)

It is hard to believe that my little boy turned five on Friday. It seems like it was just yesterday that he was born. Now he is writing and wanting to learn to read, he knows his numbers, letters and colors, is a great big brother to Clara Rose (most of the time) keeping an eye on her when I ask him too, and always proud of her accomplishments. While he is a great lovable and friendly kiddo, he has his moments just like any other kid. One thing that concerns me is his temper and his inpatients. He wants to be able to do something right the first time and when he can't he gets mad. My thoughts are, this is where Clara comes in at. She has such determination and when he starts getting so frustrated I remind him how Clara has had to work to learn to walk (and now to jump) and how she never got mad or frustrated about it. This seems to make him think twice about getting mad when he cannot do something right the first time and pushes him to keep trying. Makes me wonder how much more Clara Rose is going to influence Owen's life compared to a typical sibling. I have an older brother and while I know he influenced me (I took on an attitude of if my brother could do it I could do it too), and although I know my brother is proud of my accomplishments I do not feel I really influenced his life much. I believe for Owen this will be different, while Clara will hopefully have the attitude of "if Owen can do it I can too", Owen will also learn about determination and practice makes perfect from Clara Rose.

Owen at Birth 5 years ago

Owen being a Super Model for Family pictures just a few weeks ago

Where did all the time go? When did he get so big?

Update...a long time coming

Hi all, this is Ellen, Owen and Clara's mom and I am hijacking the blog.  While I hope Rob will stop by and put in his 2 cents somewhat regularly, I suspect you will hear much more from me and I hope to keep the blog a little more up to date.

Tubes and Tear Ducts:  Tubes are doing great, one tear duct is completely cleared now, the other one (the worst one to begin with) clogged back up in a about a week.  Honestly, we have not talked to the eye doctor about this.  Not a big concern right now.  At the time the tear ducts were probed, she indicated they could put a stint in to help keep it open if the initial procedure did not work. 

Christmas: Christmas was great, although took a little encouragement to get Clara to open her presents.  Santa brought her a small trampoline which now sets prominently in out living room and which Owen jumps on more that Clara.  Clara is still working on jumping, it is a slow process but she is getting there.  Owen got his favorites....race cars, race track, trains, train track.

January flew by and I cannot believe it is already February and Owen is almost five (birthday is the 11th).  We did get some great family pictures taken by a friend of mine here in central Ohio who just started her own photography business.  She has a traveling studio and came out to the house to take the pictures which was great!!  We will be starting the IEP process for Clara either last week of February or the first week of March.  We also need to decide what we are going to do about Kindergarten next year for Owen (Pay for all-day every-day or send him to the regular all-day alternating day program).  Decisions Decisions.  Since I know I love seeing pictures of the kids on the blogs I have been following here are a few from our recent family photo shoot.

Ear Tubes and Tear Ducts

Clara's first set of ear tubes fell out sometime this summer and were removed along with some wax by the ENT.  By October, she had fluid in both ears that was once again impacting her ability to hear.  I suspect that the fluid is also affecting her balance.  So, we will be heading to Nationwide Children's Hospital bright and early tomorrow morning to get a new set of tubes.  This time, Clara gets a little bonus - she will also have her tear ducts probed.  The poor little girl wakes up with at least one eye glued shut every time she gets a cold.

Being Cute During the Wildlights Members Preview Night

Receiving Her Medal During the Last Kidnetics Energy Session of the Season

The Cutest Little Elephant

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!!!