Healthy Heart, Happy Mom

I was quite anxious about Hailey's cardiology appointment this morning.  I had a hard time sleeping last night.  It is an irrational fear because her heart has been repaired.  Hailey is relatively healthy.  Knock on wood.  Her vision is good, her hearing is good, she's growing, she's on the growth charts, her heart is good, her thyroid is good (that we know of...she has a blood test coming up), and she eats good.  I think when Hailey was born and I read books on Down syndrome.  They always listed all the medical conditions that your child with Ds "could" have.  I think in the back of my mind, I always feel like we are teetering on the edge of a cliff and at any minute a doctor will give us bad news at an appointment and we will be free falling off of that cliff.

I do love our cardio appointments because our doctor is fabulous about being on time!  We arrived 15 minutes early and were called back 5 minutes before our appointment.  Hailey has always hated doctor appointments...EVER appointment.  First came height and weight.  Not a single tear...not a single arched back.  There was a "friend" from Child Life that was with us armed with an iPad.  Hailey didn't seem too interested at first because she was too busy trying to figure out what the nurse was doing to her.  Then came time for pulse ox.  We have never gotten a good reading on the first try.  There have even been appointments where they gave up because Hailey never cooperated and didn't show any signs of distress.  100 first try!  Woot! Woot!

We tried her right hand, but apparently that didn't work because she wanted to use her right hand on the ipad, so we switched!

 The appointment was going so well that I was afraid of what was coming next...the EKG.  Last year, we had to physically hold Hailey down and hold her arms down.  Wow, has my little girl grown up.  I'm not saying she was happy, but she was cooperative!  She gave the nurse dirty looks and didn't take her eyes off of her the entire time she covered her in leeds, but she didn't cry and she didn't pull them off!  It was funny watching Hailey's body language.  All of her therapists have always commented and complimented on Hailey's posture...she slouched so much trying to make sure they couldn't attach them to her.

Keeping an eye on them.

Totally avoiding the ipad...only focused on the nurse

Did you really do this to me?!?!?

 Great EKG results!  The next two photos are a little blurry, but I have to share them with you because it summarizes Hailey's doctor appointments.

After the EKG, I put her shirt back on.  She looked at me, signed and said, "All done"

She followed it with "Up, home"

Bad news...we hadn't even seen the doctor yet!  Dr. D came in within seconds of Hailey's plea to go home.  She was still very cooperative but wanted to assist the doctor with the stethoscope and then took over the stethoscope to show Dr. D how to do it.  Then in true Hailey fashion, she wanted the doctor's earrings :-)  If she could have, she would have left with the stethoscope and the earrings!  I'm not sure if watching Doc McStuffins and playing with her doctor set helped the appointment or it is because she is growing up or maybe a combination of the two, but it was a fantastic appointment!

Good news, everything looks good and we go back in a year.  At that point, if she thinks Hailey will be still for an echo, we will schedule one then or we will wait another year.

I left with a sigh of relief.  I "might" have bought Hailey a little jewelry for her birthday after we left ;-)

This last pic is just because she's cute :-)

My Littlest Valentine

Little Miss doesn't start preschool until the 27th, but her teacher extended an invitation to the class Valentine's Day party today.  It took some juggling because I also volunteered at Ian's party, but we were able to work it out.  I was a little nervous at first because Hailey seemed a little overwhelmed.  This is a little uncharacteristic of her, but Dad also had to wake her up and she is normally napping during that time span. 

She looks a little tired here

Finally at least sampling her snack

We then moved onto story time.  Hailey had a seat in a chair and seemed a little overwhelmed with all the kids all huddled together.  I convinced her to stay, but I'm not sure how much she listened.  She was too interested into everything going on around her. 

It was then onto craft time which is Hailey's favorite thing to do.  "Stickers" are a fave right now.

I hate that this picture is blurry....I had to share.  That smile melts my heart!

The other kiddos then started packing up their things to head to their car line.  The bus riders sang a couple of songs.  Hailey didn't participate, but she watched excitedly (and then decided to attack the teacher's computer and do her own "typing"). 

As the other children were leaving the classroom, Hailey decided to "read" a book.  Apparently, she was paying attention when Miss A (her speech therapist) was reading because it is the exact book she plucked from the bookcase and climbed into the rocker to "read" it.  Comically, Hailey was giving Miss A a LOT of attitude today.  Gave her the cold shoulder and looked at her like she had three heads.

Look closely at this expression....do you see the attitude she is giving Miss A?!?!

Hailey did say "jewelry" for her though...show off.  I think Hailey's speech therapist is going to be a good fit for her.  She will definitely push Hailey, but Hailey will give her attitude and make her work for it :-) 

I was happy that Hailey was able to make it to the party.  I "might" have shed a tear or two when we left because seeing her in the classroom made it all more real.  I am still scared for the transition and am apprehensive with sending my "nonverbal" 3 year old to preschool.  I am still sad that my last baby will be going off to school, but I am more positive than ever that she is going to the right place!

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!