World Ds Day: Fact, Fallacy, Foto

Just a short post today.  It is part of a blog hop (check out others, here) with others that are celebrating our children/family/friends that sport an extra chromosome.  I know I've flooded everyone with pictures of my daughter, my thoughts about Down syndrome, the way Hailey has changed all of us and how we would like things to change.  I can honestly say, I will probably never stop.  I advocate for all of my children.  The world just doesn't always view Hailey as equal as they do the boys.

Fact:

 The extra chromosome affects each child differently.  They are all unique, individuals.  One child can be born with every "text book" medical condition and others can have none.  So far, Hailey has had open heart surgery and low muscle tone.  We keep an eye on other areas: eyes, thyroid, ears, etc., to be prepared if anything else does come up.

Fallacy:

I personally thought my daughter would be a quite, reserved, wall flower.  Wow!!!!  Was I wrong!  She is anything but!  She is the loudest, chattiest, most social child I have!


Fotos:

Impromptu Dance Party with her big brothers :-)

Who I Am?

Hailey isn't old enough to tell you who she is (I'm sure she would try, but you probably wouldn't understand it).  In the meantime, let me tell you who she is....

Smart

 

 

 Nurturing

Beautiful

A helper

Sassy

Social

Enthusiastic

Dramatic

Funny

 

 

Active

Loving

A sister (and her brothers' biggest fan)

A daughter...cousin...niece...granddaughter...a perfect puzzle piece that completes our family

Not only do I want others to see "who Hailey is", but they need to know what effect Hailey has made on her family.  We laugh more.  We take less for granted (open heart surgery on your 4 1/2 month old will do that to you).  We celebrate more.  We are more compassionate.  We are less judgmental.  We are not "special" people.  We are living life one day at a time.  Taking things as they come.  Enjoying our children and celebrating their differences!

Another 2 Year Appt

Hailey's birthday generally brings a long list of doctor's and therapy appointments.  I shared cardio with you last week and her EI evaluation a few weeks ago.  This week we had her 2 year well check.  We had no shots (which after having a blood draw a couple of weeks ago, I was super happy about this!)

Hailey was not thrilled with this appointment.  She didn't want to be weighed...she didn't want her height checked....forget about her head measurement.  Let's see...not happy with her eyes checked...or her ears...or her mouth...not even thrilled with her heart and lungs listened to.  This is new to me.  The boys were always very compliant at the doctor's office and the dentist.  Apparently according to the doctor, they were  not typical.  Most toddlers don't enjoy going to the doctor.  Fancy that, Hailey is acting like a typical toddler and the boys were atypical.

In the end, the doctor did get to see and hear everything he wanted to.  Lungs and heart sounded good.  Teeth (although they are a crooked, hot mess) are good.  Tonsils appeared normal.  Ears didn't have fluid in them.  Eyes reacted appropriately.  Her growth has been fantastic.  She is 34" tall and 25 lbs.  This puts her in the 45th percentile for both height and weight on the typical chart.  A lot of children I know with Ds are not even on the chart or they are hanging on by a very narrow margin.  Looks like peanut isn't quite a peanut anymore!

I did ask for a referral for endocrinology.  Hailey has her thyroid numbers checked every 6 months with a blood draw.  Over the past year, her numbers have started to increase slightly.  It could be nothing, but it could be a sign of hypothyroidism.  The side effects of hypothyroidism are weight gain, constipation, hair loss, fatigue, depression, cognitive impairment and decreased heart rate.  None of those are things I want to go through, I don't want Hailey to have to deal with them either.  So we will get it checked out and see where we go from there.  Our ped said he doesn't feel her numbers are high, but it wouldn't hurt to establish a relationship with an endocrinologist either.  When it comes to my children's health, I would rather be overly cautious than overlook something.

Hailey's pediatrician said that he thinks Hailey is doing fabulous.  He suggested getting her outside, moving, interacting with children and everything the outdoors have to offer this summer.  He doesn't want to see her again until she is 3.  All in all, I couldn't have asked for a better appointment :-)

Here are a few pics of Hailey on the move...dancing that is.  She loves all music....toys, her brother's ipod, mom's phone, her princess castle....she will dance to it all!  Sitting or standing...doesn't matter she will dance!

She truly is the rockstar of the family.

Learning Tools: Felt Board, Flashcards & iPads

When you have a child...baby, infant, toddler, preschooler...there are a ton of products on the market that guarantee your child's success for learning and reading, etc.  The world of special needs is no different.  Everyone has a claim as to what works the best.  Everyone has an opinion.  Honestly, I don't believe anyone has a true "winner" because as with typical children, children with Ds are all different personalities.  Ian and Brayden do not learn the same.  What worked easily for Brayden doesn't help Ian at all.  We never would have tried techniques that work with Ian on Brayden because I know some wouldn't have helped him at all. 

That being said, we do some new technology with Hailey and some older school.  I belong to a fabulous group of moms with children in our area that had children born with Ds in 2011.  They had a great get together (I saw they because I missed it) where they made felt boards with different scenes.  These women are so fabulous that one of them made Hailey her board and cut out all the pieces for her.  There are 4 sets with the board:   

House

Street

Ice Cream

Sea

The amount of activities that can be used with these are endless.  You can incorporate gross motor, fine motor, communication, etc.  Work on standing by elevating the board.  Work on colors, counting, labeling, shapes.  Have your child point, take items off, put items on.  Some days Hailey is more receptive than others.  Then there are days that her brothers are more active which can "push" Hailey to the side just a little :-) I'm planning on using this felt board for a long time and am considering making other scenes.  

Some days she finds it more fun to remove everything and crush it :-)

 We love felt here.  Hailey even had a felt Christmas tree this past year.

On the other end of the spectrum, we use an iPad frequently with Hailey.  Different days have different results and not everything works the same each time.  My friend, Meriah, has a fabulous list of apps on this post. 

One program we use on the computer and iPad, has surprised me the last few days.  The program is BrillKids.  It is a reading program using flashcards.  A lot of people start much sooner than we have with Hailey.  I tried using it a few months ago, but I don't know if the time of year was too hectic or she just wasn't ready for it.  We failed miserably!  I decided this week that I wanted to start back up with it.  I was skeptical because of how horrible our success was last time!  No, Hailey isn't reading, but I'm amazed at how receptive she is of it now!  I think their app on the iPad is free...it's been awhile since I downloaded it.  Each day there are two lessons.  Don't worry, time is minimal.  Each lesson only lasts a few minutes.  The lessons are broke down into 3 sets.  The first set is just a word flash.  Each word is flashed on the screen.  The second set is a multi-sensory set.   The word is flashed, a picture is shown and then there is a video clip of the word.  The third set is a picture flash.  Hailey sits, listens and watches it all!  She signs every word she knows or points to the item (some of our words have been parts of the body).  If it is an action word, she has been actively demonstrating (unprompted by me) them.  The first day she didn't, but the 2nd and 3rd she did.  The word was wave.  In the second slide, the narrator says, "Can you wave?" and Hailey waved at the computer.  When the word was kick, she kicked her leg.  When the word was point, she pointed. 

This might seem like nothing to some people, but this seems like a great program for Hailey!  After a few days, a couple of the words drop off and a couple new ones are added.  Children with Ds are visual learners.  We aren't far into this program, but I am very impressed with how well Hailey has responded so far.  I'm excited to expand her signing, her vocabulary, and her comprehension. 

I Don't Miss It

I'm writing this as part of the writing prompt blog hop on Ellen Stumbo's beautiful blog.  The topic is "I don't miss it".  You can read more thoughts on this here.

Wow...this will be easy, but maybe a little emotional.  I don't miss the person I was before Hailey was born.  I was uneducated and unaware.  As a product of the 90s, I used the r-word not realizing how the word felt to others.  I knew very little of the world of special needs.  I was rather uneducated on Early Intervention, the important role it played in so many people's lives.  It didn't affect me or my children so I didn't see it.

Embarrassingly I have to admit that I didn't not "see" people with special needs or their families.  I saw through them and passed by without a second glance.  I never interacted with them or tried to get to know them.   Honestly, I don't remember seeing many people with special needs at all.  I wasn't trying to be snobbish, I think it wasn't part of my life so I just didn't see anything.  I don't miss that person who was self-centered.  I prefer the "after Hailey" mom.  The one who sees others.  Chats with other families.  Engages their children.  Loves knowing more about them.  Sees value in everyone's life.  God makes no mistakes and we are all here on Earth for a purpose.

I don't miss the person who had never experienced the amazing hospital and staff that we have been introduced to at Cincinnati Children's.  There are so many caring, dedicated professionals who make it their job to help children and families.  Most of the staff we have encountered love their job and see my daughter as a beautiful little girl...not a number.  I have also met amazing families.  Families that are going through diseases and illnesses that I cannot imagine.  I'm positive I will never ever forget the conversation I had with a grandmother whose 15 year old granddaughter has EB (Epidermolysis bullosa - where the skin blisters and "falls off").  The unconditional, unwavering love that grandmother had for her granddaughter touched me in a way that I cannot explain.  The strength of that family of that young girl left me speechless. 

I don't miss the person that didn't know the fabulous network of families both locally and in the cyber world.  The people that have become a support system that I find invaluable.  They welcomed me with open arms...there when I need to brag, there when I need to cry, there when I need more information or don't know where to turn.  I've never felt so welcomed, so accepted.  They've helped educate me in more than the world of special needs.  Sometimes they are the nudge I need to get moving on something, the validation that I'm not going crazy or that I'm doing a good job.

I don't miss the person who moved at warp speed and didn't take time to celebrate the little things.  Yes, our lives are busy but in a sense we have slowed down.  We don't take as much for granted.  We celebrate more things in our life. 

I don't miss the seriousness of the "before Hailey" mom.  I think we laugh more and love deeper.  I've started to see the world through different eyes.  It is amazing...how differently life and the world look now.  I wouldn't change a thing and I don't miss anything about "before Hailey".

These pics have nothing to do with the topic, but it was interesting to see Hailey play with her little cousin this past weekend.  She enjoyed herself, but I think he doesn't want to see her again for awhile :-)

Hmm...what does he do?

Check this seat out.

Please help me before she does something!

For real, can anyone do something?  I don't need this many bibs.

Finally, Hailey took a nap so Landon could rest....in peace and quiet :-)

Heart Follow Up

I posted on FB that Hailey's heart appointment was okay, but realized I never elaborated.  We headed downtown early Monday morning to Hailey's cardiology appointment.  We try to avoid the main campus as much as possible...the parking and traffic are annoying.  Unfortunately, the scheduling department messed up and scheduled us downtown.  One thing I do love, love, love about the cardio department is their promptness.  I've never have an appointment start late.  I've never sat in the waiting room for more than a few minutes.  We started with the nurse who weighed and measured Hailey.  She messed up her measurements so I didn't even take a look at them.  We are at our pediatrician next week so I'll get them there.  We didn't have any luck with a blood pressure.  Hailey moved too much.  Thanks to a lot of signing and the help of the iPad, we were able to get all of the EKG wires stuck to Hailey and her EKG run with little movement on Hailey's part.  Getting a pulse ox, took a little longer, but we finally got one at 98. 

Most children's hospitals are teaching hospitals so there are always extra nurses, doctors, students, fellows, etc.  The fellow came in shortly after the nurse.  He asked the standard questions...any color changes, any breathing issues, any feeding issues, etc.  He was satisfied with my answers and left.  Within minutes, our cardiologist came in.  She looked over Hailey.  Listened to her heart, stomach and lungs.  Checked both her OHS incision scar and her chest tube scar. 

We are going to continue our annual visits until Hailey gets older (somewhere between 7-10).  A lot of it hinges on how her appointment goes at age 4.  At that point, we are going to need repeat her echo (ultrasound of the heart).  Her temperament and personality will determine if she needs to be under general anesthesia.  The cardiologist isn't concerned with the patch of the VSD, but more concerned with the fact that one side of her heart has a higher blood pressure than the other.  It is due to that side having to work harder with the hole...more blood volume was on that side so it had to work harder.  The cardiologist is anticipating the pressures to be more equal during the echo.  If not, Hailey might have to take blood pressure medicine to regulate it.  I'm not going to get worked up over that now...it is 2 years away and there is not a single thing we can do at this point. 

Overall, the cardiologist agreed that Hailey looks good.  Her EKG should a perfect rhythm to her heart and she thought her growth and everything else looked good.  We enthusiastically told her we would see her in another year.  I never dreamed that first year that there would ever be a time that we weren't concerned about her heart and heart failure.  We were seeing the cardio every 2-3 weeks.  There seemed to be no end....no time to catch our breath.  Seems so long ago....


Here are pictures that I wouldn't let myself even dream about when we were waiting for open heart surgery.  Hailey driving her brothers crazy while they finish homework because she wants them to play with her.

No, I didn't intentionally get this shot, but, yes, I did get a picture of her eating a penny.  Don't worry!  I did get it out!

Ian telling her all the reasons she has to leave him alone.

What??  He told me to get away?!?!?!?

Nevermind, I will find something else to get into!

Hope everyone has a good weekend!!!!

Will She Be Loved?

Shortly after Hailey was born, I questioned...

• Will she be loved like the boys are?
• Will others love her?
• Will we bond with her like we did the boys?

These aren't questions I asked when the boys were born.  I just assumed them.  Why did I question it with Hailey.  I worried how she would be accepted into our life.  I worried how she would be accepted by our family and friends.

Wow...I wish I could talk to that version of me.  She needed smacked into reality (no not really).  However, there are times that I think people love our daughter more than the rest of our family.  I have friends who I think are more disappointed in not seeing Hailey than in not seeing me :-)

I've described before how social Hailey is and how she attracts strangers.  What I didn't realize is that her new mode of transportation would make it more pronounced!  Walking as opened a new avenue for her obsession.  At a church fish fry last week, Hailey decided after eating that she needed to "work" the room.  She walked through the entire room.  First walked down the aisle and waved, smiled and chatted with each table near us.  To one woman, Hailey raised her hands and said "up" so the woman picked her up.  She proceeded to wave and chat with everyone else in the building.  At swim class this week, Hailey decided she needed to walk into the pool area even pushing my hand away I tried to hold it.  She continued to the bleachers to greet the people waiting for swim lessons to start.  She waved, chatted, high fived and smiled at them all...twice!  Once down the bleachers and then we had to do it along the way back.  At Brayden's game this past weekend, we were walking around to kill time because the game was delayed.  Some how Hailey starts interacting with fans from the other team.  After the game, those same people went out of their way to say good-bye to Hailey.  At dinner on my birthday, a woman stopped and asked if we attended the name of our church.  I cautiously said yes.  She said that I had the most well behaved children and she loved watching Hailey during mass.  She continued saying that Hailey is so beautiful and bright. 

It is sometimes different.  I'm not used to Hailey's celebrity status.  The boys were social, but not like this!  I go to the grocery store without Hailey and the workers ask where she is.

Will she ever be more reserved?  Who knows.  It is just so fascinating watching the way people light up when they interact with her.  To see how happy she makes others.

I wish all new moms with a Ds diagnosis could see the following pictures.  If they could see the love in these pictures, I think it would make them feel a little better.