Hearts & February

When you hear February, what do you think of?  This year, I think everyone in the Midwest would think of snow and brutally cold temperatures.  Many people also think of Groundhog's Day and Valentine's Day.  Hearts, candy and flowers.  It makes me think of Hailey...her birth...and her heart.  Congenital Heart Defect Awareness Week wraps up tomorrow on Valentine's Day.  Hailey is one of the 50% children with Down syndrome that had a heart defect.  Unfortunately, Hailey's was one that did require open heart surgery.  Luckily, it was the most easily repaired.  I'm thankful for modern medicine and the improvements in technology that allowed the surgeon to save Hailey's life.  Years ago, children with Ds did not get early heart scans.  In some countries, Hailey wouldn't have been able to receive her life-saving operation.

Ironically, February also starts Hailey's "annual" appointment schedule.  We seem to always start with her cardiology follow-up.  It's a quick appointment this time.  Height, weight, questions, and an EKG.  We aren't scheduled for an echo cardiogram for a couple more years.  In my mind, I know that everything will be fine.  She looks fine and she is exhibiting ZERO symptoms that would lead us to believe that her heart is not working correctly.  However, it is very hard not getting anxious and worried about the appointment.  I always question myself...are we missing something?  Is there a symptom we are overlooking?  Will we get in there and be snowballed with there being something wrong?  I'm not sure how long I will live with that fear of something else being wrong with Hailey's heart.  I have a friend whose daughter is a few years older than Hailey who says she no longer worries about her daughter's heart appointments.  I hope I get there as we spread the follow-ups further and further apart.  In the meantime, I will remember all those minutes, hours, and days that we spent watching Hailey's heart fail.  I will remember that fear and anxiety as we waited through her heart surgery.  But I will also remember that joy and relief we felt when we saw Hailey eat her first full bottle and saw her little, round face pink for the very first time (minus the blue undertones).

Guess I will do what I always do...cross my fingers and pray that the appointment goes as well as the last few!

Hailey a week before her open heart surgery

The night before open heart surgery

Wee hours of the morning of open heart surgery

The day after surgery...when I realized everything would be okay

First time holding and feeding Hailey after surgery

3 days after surgery

Her healed beauty mark

Valentine's Day 2012

Valentine's Day 2013

This doesn't fit the post, but I love the joy and love she shows for her brothers!

Cheering with the cheerleaders at Ian's game

Decorating her Valentine's box for her class party

An early birthday celebration

Even blew out her own candles

Wearing a red heart for CHD awareness week!

Unexpected Expense

From a very early age, Hailey showed a very girly, flashy side.  When her therapist and EI coordinator would come into our house, they generally had to remove all jewelry because Hailey would only focus on them and not the task at hand.  Eventually we used  jewelry as motivational items.  Hailey crawled and walked for jewelry (not food like the boys).  Recently, my make-up has started disappearing.  First it was mascara and then most recently eye shadow.  I think I'm going to have to start locking all my stuff up :-)

For an early birthday present, Hailey received dress up jewelry and shoes.  This morning, one of us said the word jewelry and crystal clear out of Hailey's mouth came the word "jewelry".  My girl can't always say the word milk clearly, but she can say jewelry?  I think we may have a long, expensive journey ahead of us!

Nothing makes her happier than a bag filled with beads.

Who doesn't wear heels while playing in the house?

Sharing her beads with her cousin.

More is better, right?

Beads, evening bag, heels and bracelets...all go great with her pjs :-)

Reality Setting In

I know I'm boring everyone by now with talk of Hailey starting preschool, but indulge me for another day (or two or three....).  I had to go to the school's registration office to drop off Hailey's birth certificate and a proof of residency in the school district.  As we were walking out of the school, it actually hit me.  Yes, I know, we have been going through this process for a couple of months, but it still always seems to "imaginary"...so far into the future. 

Hailey starts school in 21 days.  I've always been excited and nervous when one of my children started preschool, but Hailey is my last to start preschool.  As Hailey's 3rd birthday approaches, I think back to her start in life.  The obstacles she has overcome...the scares and tears we have had.  The successes she's had and the milestones she has reached.  It's been an overwhelming three years, but they have been fabulous at the same time.  Receiving a diagnosis that I thought would end our world...instead it opened our world to things we overlooked and people we never knew.  The NICU stay that made me feel like a new mom all over again...the worrying that came and then the joy of bringing our baby girl home.  The long wait for open heart surgery as we watched our daughter slowly go into congestive heart failure and then the fear of her not making it out of open heart surgery.  The hours of therapy to help her learn to roll, sit, crawl, cruise, walk, speak, communicate, and the worst...learning to drink out of a straw (yes, it was the worst for us...or seemed so at the time.)

I'm quite proud of my little girl.  She takes each task like a champ (there might be a little sass involved, but we are used to it.)  I'll probably shed more tears than her.  Don't get me wrong, I am excited for her to start preschool.  I received an email last week from her teacher before I even arrived home from our IEP meeting.  Then on Saturday, the school announced that a preschool teacher had applied for a grant (and was awarded) for an iPad.  Here is the quote they posted from her, "I have some non-verbal children in my class and I was wanting to have some sort of "higher tech" device rather than printed pictures to help them communicate.  I had been researching and there are some wonderful, affordable iPad apps.  It is also a nice way to help all students become familiar with technology and allow them a different avenue for learning."  It turns out that it is Hailey's preschool teacher.  I'm very excited!

I am hoping preschool breaks a few bad habits, but I'm sure she might come up with a few new ones as well :-)

Can you see the mischievousness and rottenness in this girl :-)

Don't let that smile fool you!

I have some non-verbal kids in my class and I was wanting to have some sort of ‘higher tech’ device rather than printed pictures to help them communicate,” she said. “I had been researching and there are some wonderful, affordable iPad apps. It also is a nice way to help all students become familiar with technology and allow them a different avenue of learning.” - See more at: http://www.littlemiamischools.com/school_NewsArticle.aspx?artID=713&schoolID=9#sthash.VeaCEolK.KQoZsHY4.dpuf

I have some non-verbal kids in my class and I was wanting to have some sort of ‘higher tech’ device rather than printed pictures to help them communicate,” she said. “I had been researching and there are some wonderful, affordable iPad apps. It also is a nice way to help all students become familiar with technology and allow them a different avenue of learning.” - See more at: http://www.littlemiamischools.com/school_NewsArticle.aspx?artID=713&schoolID=9#sthash.VeaCEolK.KQoZsHY4.dpuf

I have some non-verbal kids in my class and I was wanting to have some sort of ‘higher tech’ device rather than printed pictures to help them communicate,” she said. “I had been researching and there are some wonderful, affordable iPad apps. It also is a nice way to help all students become familiar with technology and allow them a different avenue of learning.” - See more at: http://www.littlemiamischools.com/school_NewsArticle.aspx?artID=713&schoolID=9#sthash.VeaCEolK.KQoZsHY4.dpuf

I have some non-verbal kids in my class and I was wanting to have some sort of ‘higher tech’ device rather than printed pictures to help them communicate,” she said. “I had been researching and there are some wonderful, affordable iPad apps. It also is a nice way to help all students become familiar with technology and allow them a different avenue of learning.” - See more at: http://www.littlemiamischools.com/school_NewsArticle.aspx?artID=713&schoolID=9#sthash.VeaCEolK.KQoZsHY4.dpuf

Low Muscle Tone

It is not new information that people with Down syndrome have low muscle tone.  It makes physical activity challenging.  It's not that they can't do things, it is just means that it takes more effort, more work.  Hailey's PT once told me that Hailey walking 10 feet was like a typical child walking 100 feet.  There are also varying degrees of low tone.  Hailey is high low tone (not sure if there is a technical term).  She has always been very gross motor driven.  She is always moving and always has.  From day one.  On the flip side, I know several kiddos that are on the opposite end of low tone...they have very low, low tone.  It takes them much longer to reach those physical milestones.  They are content watching the action than joining in. 

Something I didn't realize when Hailey was little is that low tone not only affects the muscles that we automatically think of...skeletal muscles...quads, biceps, etc.  Low tone also affects facial muscles (including the tongue) which makes it more difficult for children with Ds to speak.  It can also make feeding difficult for children. 

There are internal muscles that you don't think of either.  It can affect their bladder and their ability to hold urine.  This makes potty training more difficult and in many times delayed.  None of those scare me as much as her lungs.  Kiddos with Ds are much more susceptible to respiratory illnesses.  Colds, whooping cough, the flu, RSV,, pneumonia....they all terrify me.  We try to quarantine the boys as much as possible when they are sick.  We use a lot of sanitizer and we wash our hands nonstop.  I know so many little ones with Ds that end up in the hospital with just the common cold.  These respiratory illnesses can be life threatening to them because their lungs are weaker.  All of us get the flu vaccine every year to try to keep it away from Hailey.  I am a little nervous about preschool.  There are so many bodily fluids with preschool and they are all so touchy-feely.  I'm hoping by the end of February, some of the yucky stuff will be gone.

On the flip side, children with Ds give the world's best hugs :-)  With their low muscle tone, they seem to meld into your body.  Their snuggles are the best!


In case you were wondering, only affected Hailey's eating for the first 4 months (before open heart surgery) and with the straw...as you can see, we have no feeding issues!

 

The boys eventually just gave her the entire bowl because she kept swatting their hands away!

The Winter That Will Not End

Oh, this winter is about to get the best of moms throughout the tri-state (and probably more).  Our school is on snow day #9.  Ian might be celebrating his birthday at school for the first time this year (June 5).  The meteorologists are calling for more snow over the weekend and also the middle of next week.  Ughhh...please make it stop!

This afternoon the boys donned their snow gear and started to head outside.  Ten seconds later, this appeared.

Hailey waved at me and said "Bye, bye!  Side".  (Side is Hailey's version of "outside").  She followed the boys to the garage (one of them "might" have shut the laundry room door in her face).  She was crushed.  They left without her.  I sent his pic to Dad.  Jokingly (I think :-), he texted back "a good mom would take her outside".  Crap...he's right.  This has been our who knows what number of snow and I haven't taken her out in it once.  We didn't get any snow last year.  I'm positive she wasn't out either of the other years.  So, mommy-guilt got the best of me and I gathered up some snow gear for Hailey.  Note to self: Buy Hailey snow pants next year.  Fortunately, I kept some of Ian's stuff (probably on accident because they were in the garage and I didn't remember they were there).

I walked Hailey down to where the kids were sledding.  Hailey grinned from ear to ear.  She loves being outside and loved the snow.  She loved being with the "big kids".  I let her take a couple of turns with the boys and their friends and then once by herself.  We were both cold by that point so we headed home.  She was still grinning when we came inside. 

For once, I'm glad I gave into the the mommy-guilt this time.  It was worth is all to see the pure joy on Hailey's face.  Now, however, I'm ready for the snow to be gone and spring to arrive!!  I'd much rather play with her outside in jackets than snowboots.

It is so hard saying no to this face.

She needs a little practice with holding onto her sled :-)

The boys were disturbed with her camo gloves and boots...thank goodness mommy can be a pack rat!

Play Date at the Museum Center

We are very fortunate to live in a metro area with a fabulous Down syndrome association.  The Greater Cincinnati Down Syndrome Association goes back and forth with the association in Kansas City for first and second largest associations in the nation.  They sponsor lots of social activities, education series, and free classes (sign language, yoga, dramakenetics, etc) for our loved ones with Ds.  Due to the size of our association, we are broken up into several smaller groups.  Some of the groups are geographic in nature:  Eastside, KY, etc. and some are by birth year.  Hailey is a proud member of the 2011 group.  I honestly do not know the exact number, but I know there are 23 in our facebook group.  We "try" to get together once a month, but sometimes that doesn't happen.  We have a hard time making some of the events because of the boys' sports.  When we do make it, I love watching Hailey socialize with other little ones with Ds (and mom loves hanging out with the other families).

Several months ago, one of the moms and I noticed how alike our daughters are in personality.  They are both the youngest of 3 children.  We decided to meet up at the Museum Center (they have a fabulous children's area).  Hailey likes play dates...she loves kids.  I think it is important for her to have play dates with both typical and atypical children.  The majority of her classmates will be typical children.  However, I think it is important to know that she isn't the only little girl with Ds.  We teach our children that differences are what makes us unique and beautiful.

It didn't take long for Genevieve's mom and I long to realize our daughters had met their match.  They are both sassy, bossy, and don't let others push them around (actually they got a little pushy with one another when they were invading one another's personal space).  Both girls seemed to have a lot of fun, even if they wore Melissa and I out!  Impulse control is one thing we need to work on...they like to wander.

Some days I like to watch the reaction of others when they see more than one child with Ds.  Some stared a little too long out of curiosity.  Some sat watching the girls with the biggest smiles on their faces.  Who knows what was going on in their minds.  I didn't really care, I was too busy watching the girls have fun.

Gen right after she decided to sample the sand

Hello....can someone get this kid to stop stealing my shovel?  His mom won't.

Hailey loves playing in the water

Love that smile!!!

Looks like Gen is baby hoarding, but Hailey is just trying to escape

Ahhhh...I'm just going to hang out here for a bit.

But not for too long.

Cinderella mopping the floors.

Separate frigs works out well.

Separate works better because sharing the same doesn't always work.....this was right before they started elbowing one another.

Hailey reorganizing

Right before she swatted the boy for touching "her" car

Always on the go

Such cuties!!!