The Hailey Herald

The Hailey Herald

Thursday, July 26, 2012

Emerging Communication Skills

I'll preface this with, I have always been very proud of my little girl.  She is the strongest, most determined person I have ever met...and yes, she is only 17 months old.  I hate that everything is so much harder for her to learn than her brothers.  With that said, I do still get frustrated when we work and work and work on something and she doesn't quite get it.  I try not give up because I definitely do not want her to ever give up because it is difficult, but some days it is hard.  I'll admit, I've been jealous of the typical 17 month old children who are walking and even some running while my little girl just recently started her robot-walking with her walking toy.  While I am over the moon with this newest development, I am well aware that we have a long, long road to having an independent walker. 

I've had and still do have a lot of fears about Hailey and her future.  How could I not?  One of them has always been communication.  I fear not being able to communicate with my daughter....not knowing her hopes and dreams, feelings, fears. 

We recently made the decision to increase Hailey's private speech and physical therapy.  I'm hoping the extra PT will help improve Hailey's walking form and the speech therapy, obviously, will help push us closer to having a talker, too. 

Right now, we are in a small break in our therapies and we spent time visiting family.  Hailey always seems to have an explosion in an area of development.  I think sometimes just the change of scenery gives her mind a break and "it just happens".  I've been so happy with what she has been doing!  Hailey has been imitating people.  I was patting my nephew's back the other day on my lap.  My older nephew started patting the little guy's back also.  Hailey removed his hand so she could pat his back.  A few times, my older nephew would move Hailey's hand over, but she didn't like it and babbled a few words loudly to him and took over patting the baby.  Hailey has been fairly good (for her age) at being "gentle" with the baby. 

She has been motion for others to "feel" a book she is looking at.   Yesterday, my sister-in-law was eating watermelon.  Hailey pointed to the bowl and signed "more"...technically, she never had any to request more but she was communicated what she wanted and it is HUGE!  She has been picking up new signs much faster now ( needs to learn more so she can keep up!).  Hailey knows about 10 signs that she will do herself, but understands a few more than that.  I almost cry every time she learns a new sign.  She's so proud of herself and I'm so incredibly proud of her. 

But there is even more to Hailey's communication, she has started trying to say the word, too!  A lot of the words sound similar and it isn't always the entire word, but it is a start.  We have a lot of "m" and "b" words...she tries to say more, milk, mom (she does say this, but not always in context), bottle, baby, ball.  She has said "done" a couple of times...of course, the ever popular "dada".  When Dad was out of town, she would pick up phones, put them to her ear and say "dada" repeatedly.  She also grabs the iPad saying "dada".  We assume that is to talk to him on FaceTime.  Papaw is a favorite, but it is for mamaw and papaw.  Once over the weekend, she said "Taci".  I know is sounds crazy but I had witnesses!  We gave Hailey something on Saturday and asked her, "do you like that?".  Her response was "like that".  It was crystal clear and yes, I had witnesses for that one too.  We looked at one another in disbelief because it was that clear.  Now, we can't get them on command, but this is all a start!

Just as Hailey is taking walking slowly...we are making baby steps with communication, too.  Brings a smile to my face, makes my heart swell with pride and even more love, and makes me dream more about her future!

Hailey with Aunt Taci
These boys love babies!

She doesn't look quite so little anymore.

This look is TROUBLE!

Tuesday, July 24, 2012

Baby Steps

In the past, gross motor has been a strength of Hailey's.  I generally give some credit to having two older brothers.  You know, big brothers are the coolest and all little sisters want to get into their stuff.  I think it is a rule of siblings :-)

Recently, we have hit a plateau in gross motor but in turn we have had a burst with language (both spoken and signing).  It has made mom quite happy to have a little burst of language...when one lags, a lot of fear enters into your mind.  I'll talk more about that in another post.  I don't want to overshadow the current topic!

We have 3 walking toys at home.  Hailey has shown ZERO interest in any of them.  She even fights using them during therapy.  I had given up even pushing them for a little while and we've been focusing more on other areas.

You can imagine my surprise this weekend when my daughter crawled over to a lion walking toy at Grandma's and walked across the floor.  She proceeded to walk back and forth about 15 times that first day.  Her form needs a lot of work.  We are a super long way off from walking independently, but for now I'm going to rejoice in the fact that she wants to do it!

Big brothers make good standing supports.

Hailey finds this funny...Ian doesn't seem as impressed.

And...a little video of some walking...

The Hurt of "The Look"

I've mentioned before that Hailey seems to unintentionally draw more attention when in public than the boys did. I've given my take on "the look" and the "other look".  We definitely receive smiles, coos and positive comments more than negative, but for some reason, the negative ones stay the longest and hurt the most.  Sometimes, the giver of the look doesn't even have to utter a word to put me in a funk and cause my heart to ache. 

Yesterday was a prime example.  Hailey and I were having lunch with a dear friend that I had not seen in years.  Her back was toward a large group of business men and women, therefore, Hailey and I were facing them.  Three women spent a better part of 30 minutes staring at Hailey, whispering and talking.  It was evident who they were talking about, but I couldn't hear what they were saying.  At one point, I almost picked Hailey up and introduced her to them (my husband thinks I am a little too bold).  I didn't even care what they were saying at that point....they were making me uncomfortable.  There were no smiles...just whispers.  40 year old women should be considerate enough to smile while staring at someone's child.  Hailey wasn't misbehaving...she was simply eating her lunch...nothing out of the ordinary.  No food yelling.  I can't really explain the feeling when someone has singled out your child and stares.  Without saying a single word...those women hurt me.  They made me sad for my daughter because stares will probably be a part of her world forever. 

I realize I was in a small town.  Seeing a small child with Down syndrome is not as big of an occurrence in a town with 15,000 as it is in the metro area we live in with a population of just over 2 million.  I teach my children not to stare at would think 40 year old women would know basic manners.

So today, I'm spending the day trying to get out of my funk.  Trying to put those women and their hard stares out of my mind and focus on my beautiful little girl with the contagious giggles and smiles.

Some of my regular readers might enjoy pics of Hailey with her new cousin.  After all the practicing with her doll....she didn't do "too" bad with baby Jax.  She "might" have bounced him a "little" too hard in the bouncy seat, but she definitely loves him!

This is her new look...head tilted with a grin....apparently it gets her whatever she wants!

Wednesday, July 18, 2012

Blog Hop: Preconceived Ideas About Down Syndrome

The birth of my 3rd child was nothing what I had expected from start to finish.  I didn't expect for the doctor to send me home in full labor.  I wasn't prepared to have a natural birth.  I wasn't prepared to do it drug-free.  You see, my first labor was bad and my son was stuck.  My second didn't go much better, we had to do an emergency c-section for both our sakes.  I went through my entire pregnancy planning on a scheduled c-section...pain medicine...not feeling anything...soaring through it all.  Hailey entered the world in 2 pushes in the OR because they couldn't prep me fast enough.  I could have walked out of the OR if they would have let me, I was texting friends 30 minutes after her birth and asking for dinner and a shower within the hour.  It all happened so fast, it was almost as if I hadn't had a baby at all.  They quickly moved me into a "birthing" room...ironic, since I was finished with that part.  A dear friend of mine was sitting there when they handed Hailey to me.  "Does she look like she has Down syndrome?", I asked.  I had a fleeting thought (I had a lot of them during my pregnancy but thought they were because of my 'advanced maternal age')...I didn't truly think it could/would happen to me.  The odds were still incredibly low.

When the doctor told us Hailey had Down syndrome, I think there were a million and one thoughts that rushed through my head at one time.  Thinking back, they weren't very rational and 99% of them weren't accurate or based on facts, but all were based on preconceived notions that I had about Down syndrome.  Our life was over.  My boys would suffer.  We were putting a burden on them later in life.  Our family was broken.  Hailey would suffer.  Could we still name her Hailey if she had DS?  Everyone will feel sorry for us because now we were "that" family.  How would we still do all the things we games, amusement parks, traveling, etc?  How would I care for her?  I didn't know what to do.  This is the worst thing that could have happened to my family.  I will probably offend someone with this, but it must be put out there.  These are the same feelings and concerns that many women who abort their baby feel and say.  I would not have ended my pregnancy had we known sooner, but the feelings would have still been the same initially.  They are all based on fear...fear of the unknown...the fear of "less-than-perfect".  I will never forget the neonatalogist when I asked, "How do we care for her, what do we do?"  His reply, "You take her home.  You feed her, love her.  She is a baby first."

Those preconceived ideas I had about Down syndrome and disabilities led me to those questions...but they all put her disability first.  She wasn't an individual.  The doctor also followed with this...."I used to have a private practice.  Of all of the families I saw that had children with Down syndrome, every one of them said that their life is fuller and they are happier than they were before they had their child with Down syndrome.  Not a single one of them would want their life any other way."

My thoughts were based on opinions....opinions of someone who didn't even know anyone with Down syndrome.  I honestly don't even know where they could have come from.  Maybe they came from the special education classes from grade school and high school.  Children isolated from everyone else.  Looked at differently because they learned different.  Something that some people almost treated as if it was contagious.  People commonly made jokes about the "short-bus" and frequently said the r-word.  How could I have been so closed-minded?

Over time, I have become more embarrassed by those initial thoughts.  I am ashamed that I didn't have an open mind.  I wonder what I missed through the course of my first 36 years...what wonderful person did I avoid?  How much fuller could my life had been?

Almost all of my original thoughts have been disproved...and we are only 17 months into this journey.  She's not a shrinking violet.  Her brothers adore her...all her cousins...and all our friends' and neighbors' children. We have not turned into hermits.  Our life is just a little more juggling because there are 3 of them and we are outnumbered....ahh!  We don't "hide out"...we take vacations, go to baseball games, zoo, etc.  Our family is not broken...we are now complete because of her.

I hope that through my blog...through Hailey's life...we can help mold the thinking of others.  That one day, someone we know might have a child with Down syndrome and when they are given the diagnosis, they think back on Hailey and what a fabulous girl she was and what a wonderful adult she grew up to be.  They can look at their child and smile...everything will be okay.

Hailey is not fond of the construction going on in the house

Hailey playing in the midst of all her toys...flooring should be done today...yay!

Apparently, if you kick the star sorter, the rings come off faster with less effort

Great pointing!
Little better mood!

I never could have imagined the joy this little girl would bring into my life!
Read what others on the blog hop have to say:

Tuesday, July 17, 2012

What Have You Learned?

I seem to get the most traffic on posts that directly deal with Down syndrome or special needs.  I'm happy about this because maybe I will open the eyes of one person or make one parent feel better about the feelings they are going through after a diagnosis.  Besides that...our life is rather boring and dare I say "normal". 

As a new parent, you learn more than you realize you didn't know (did anyone follow that?).  Who knew that some diapers work better for one child over another brand...who knew that not all babies will use the same bottle...who knew that not all children don't actually learn things in the order "the" books tell you, who knew you don't really need all the "gear" that Babies R Us recommends you put on your registry?  I'll be honest, Hailey is #3...I'm quite seasoned...or so I thought!  I wasn't sure there was much else that I didn't know.  My boys are totally different...I thought I "knew it all"!  Ha!  Boy, was I wrong!  Not only did I get a girl, but she has her extra chromosome that changed a few things along the way.

I have learned several things just because Hailey is #3...
  • We are now longer one child per adult...we practice juggling frequently!
  • 3 children can make larger messes than you can imagine!
  • It does take a LOT longer to get out the door
  • Quick trips take at least 3 times longer than before!
  • Your heart does expand with each child!
I have learned the obvious because of extra medical concerns...
  • More about Down syndrome and developmental delays
  • Medical terminology with her heart, eyes, ears, etc.
  • How to wade through insurance paperwork and medical billing
  • How to keep my cool when dealing with insurance companies and medical billing (it's not the customer service employee's fault)
  • About early initiative programs to help my daughter during her early, soak-everything-up-like-a-sponge years
  • About therapy...physical therapy, occupational therapy and speech to help Hailey strengthen her areas of weakness and fine tune her strengths
The lessons I've learned because Hailey has a disability....
  • The pride I feel when that little girl accomplishes a task that she has worked sooo hard on is indescribable and immeasurable.
  •  We celebrate everything now...the little things...
  • I don't take as many things for granted (this is probably due to her heart surgery)...we aren't guaranteed tomorrow
  • There is a wonderful group of mothers that I have met online that have become a wonderful resource and a fabulous support system...I would have never met them had it not been for Hailey!  
  • Hailey will learn to talk...she will learn to walk...she will learn to tie her shoes...she will just do it in her own time! 
  • I am stronger than I ever realized, but not half as strong as my 16 month old daughter!
  • I have learned that Hailey having Down syndrome is NOT the worst thing that could happen to my child or my family.  My daughter is PERFECT!
I'm positive there are a ton more, but the pounding downstairs (new flooring being installed) is interrupting my train of thought!

Last week, I asked some moms online (trust me, they have been a fabulous resource through our journey so far with DS!) what they have learned the most.  Here are what other moms shared with me....

"I have learned that my parenting style does not always match my sons needs so I have learned to let go of some of my ways so that I can become the mom that needs me to be."

"I have learned not to sweat the small stuff, and still enjoy the little things!"

"I have learned that if one thing doesn't work try another one and so on and so on.  You can ALWAYS make a change!   Definitely not saying the R word anymore." ~ Chris

"I have learned that having a child with delays doesn't mean my child necessarily is always delayed.  I am in close contact with about 40 women from my birth board here on BBC.  In posting some brags about Ian recently, I've discovered that he's been able to do some things ahead of his "typical" peers.  He's drinking from a straw, climbing, and taking his shirt off (odd milestones, I know!)  Some of his peers aren't even doing this yet.  Just goes to show that our kids can and do learn things on their own schedule!" ~ Angie

I learned that the measure by which society most often defines success isn't always the best measure.  I doubt my daughter will have a high powered political job or earn a PhD.  But I also learned that those things matter much, much less than her reaching her full potential, becoming a woman of character, loving others, and making her own contribution to society.  I've learned that "special needs parenting" isn't always so different than parenting.  I'm learning to take the long view and celebrate little victories along the way.

Because Ellie was in the NICU for three weeks, she started off teaching me patience, and I can tell she will continue to teach her mama patience for many years to come!" ~ Megan

"Having a child with special needs has taught me that all children are really just children and all people are really just people. 

It has taught me to have passion for those who need a voice.

It has taught me that people with special needs are very strong people as they work so much harder to achieve the things they achieve.

It has taught me that the value of a person is not how 'smart' they are, but how much drive and passion they have to achieve their dreams.

It has taught me that just because people with Ds are delayed in some ways, it doesn't mean that they aren't ahead in other areas.  I was told last week that Phoebe is a great chewer - much better than most typical kids, in fact." ~ Chris

"I have learned to put a lot more trust in my mommy's instincts." ~ Laura
"It's helping me come to terms with my vanity (not just appearances, but in the way people perceive me in lots of ways)."
"I have learned when the day is not going liked you planned, stop everything and dance, or go for ice cream. Lifts my spirits and my daughters too! I have also learned it is Ok to ask for help and support." ~ Shannon
"I've learned that a baby does not always have to do things "on time" to be doing well!" ~ Jackie
"I've learned too much to put it simply - because it's not just disability; that's easy for me. It's DOWN SYNDROME; that was the one thing I was more scared of than anything. So in essence, it was facing my greatest fear.
Maybe the one thing that I learned that really hit me was that my kid is my kid. The extra chromosome doesn't change very much. If anything?" ~Meriah   
"I have learned to face things head on. I talk openly to any one about Down Syndrome. If anything - I have learned to laugh out load till the tears roll down my face - good tears this time. I use to be so guarded , Aiden has take all of that out my life. I have learned that everything will happen in its time - that patience is a virtue and that love is the most amazing thing in the world. When I think about my little boy- my heart just bursts with pride and love. When I got the DS - I thought I would never be here - right now my co workers are passing my phone around and going ga ga  over my gorgeous quirky kid. I have learned to just be."
"I've learned that a baby with Down Syndrome is the biggest blessing that God could send to a family.  Everyone should be as lucky as we are."
"I've learned that I am much stronger of a person than I ever gave myself credit for. That unexpected miracles are sometimes exactly what you need. I've learned that I have some amazing friends and that there truly are some very caring people out there in the world...(yes, people like all of you) and that no matter the challege, we can do this. 

I've learned that there is nothing better than the birth of a child that you didn't plan for and that I took for granted the 3 pregnancies I had prior to Nicholas being born.

I've learned that DS was a blessing diagnosis and that I am one of the few lucky moms to get to experience having a child that contains more of me than his father.... lol (his extra chromosome is from me) and that Nicholas is a very lucky young man because he was gifted to us by God and some babies are gifted to people who become scared and choose to end their pregnancies.
Most of all, I have learned that ALL life is precious and that where there is love we can conquer."

"I've learned I'm ok with what Tyler will and will not be. I do not need to spend hours a day tryig to make him something he is not. He is my son and the only thing I need him to be is happy." ~ Karessa

 On a lighter note, I am privileged to spend every day with this cuteness...I'll happily share...but ultimately...she's mine!

 Thank you to all the moms on BabyCenter that shared their thoughts!

Thursday, July 12, 2012

The Gift of a "Perfect" Heart

One year ago today, we received the best gift.  It wasn't delivered by mail, UPS, didn't come in a gift bag or nicely wrapped gift box.  It wasn't money or a sentimental card.  It was the gift of a healthy heart.

I don't think as long as I live, I will ever forget that day...from start to finish.  From the early morning drive to Childrens Hospital to sleeping in chair waiting for Hailey to wake up from anesthesia.  I will never forget how happy and giggly she was that morning, how her hair was spiky on top and how tiny she looked in that hospital gown.  I remember running my finger across her chest...her skin smooth and not scarred.  I remember family members giving her kisses and hugs and smiling through it...even though I know they were saying the same prayers that Jason and I were.  The walk down the hall to the operating room seemed like a scene from a movie...the hall seemed to get longer the more we walked down it.  The 2 nurses and 2 anesthesiologists waiting patiently outside the door.  Me planting a few more kisses on her forehead, smelling that sweet baby scent and whispering, "Take care of her" as I handed her to them.  The male nurse putting his hand on my shoulder and saying, "We will treat her as if she was our own child."  Then...the wait....

I'm not sure what was worse, the wait or the updates.  Yes, I wanted updated throughout the process, but the updates also put visuals in my head that I wasn't prepared for.  "The lines were harder to put in than they had hoped.  They took longer" many times was my little girl stuck?   "The surgery has started.  Dr. Manning is stitching the patch on her VSD as we speak."  That update was the worst!  My baby was lying on an operating table with her chest open...her heart was not keeping her was not beating.  It was followed with the best updated, "Surgery is over.  The doctor has closed her up.  He'll be out in a minute to speak with you."

We waited while they moved our little girl into the CICU.  I'm so glad I looked at pictures of the little ones that had open heart surgery before her.  It helped me focus just on my little girl.  She looked so tiny in that big hospital bed.

Then we did something I never dreamed I would do.  We drove home to have dinner with the boys.  We only live about 30 minutes from the hospital.  I swore I wouldn't leave her side but it was the strangest thing.  After the surgeon spoke with us and declared her heart perfectly patched, the weight that I had been carrying around for the previous 4 1/2 months was gone.  The gloom was gone and all I saw were rainbows (and maybe a few unicorns).  I can't explain the feeling...I wish I could.

As we celebrate Hailey's 1st Heart Day, no, I will never ever forget the paralyzing fear, sadness or worry.  However, today....we are CELEBRATING!  God gave our baby girl a second chance at living and we aren't about to let it go to waste!  Hailey rocked her surgery and continues to be our rockstar!

We are this happy today....

Hailey's adorable shirt was made by her friend Cora's grandma.  Cora sported one similar on her heart day!

Tuesday, July 10, 2012

Therapy...too much or not enough

I've always been quite honest about my lack of knowledge of the world of special needs or Down syndrome prior to having Hailey.  Growing up, the term therapy meant next to nothing to me.  I couldn't relate and I didn't know anyone who had gone through therapy.  After moving to Cincinnati, I became more familiar with therapy and EI due to having a friend whose son has cerebral palsy and she worked for the county EI office.  It became more every day discussion...I knew some but not a great deal. 

While Hailey was in the NICU, the paperwork started rolling for Hailey's therapy.  I was shocked that anyone would start therapy that young...she was only a few weeks old.  Those first few weeks and month of therapy were overwhelming to me.  We only had one hour a week but I hated it.  I felt like a failure.  Not matter how much we worked on strengthening her neck and arms...I felt it was a flop...we were getting no where.  I was getting frustrated...I would cry after every session.  I felt like a failure.  My mommy guilt is worse with Hailey than it has ever been with the boys.  Since I stay home with my children, I feel I will be judged if Hailey walks at a certain age, if she can articulate her words...I feel directly responsible with how Hailey is perceived by others.  Nope, I didn't say it was rational but that is always how I have felt.  A few weeks later, we were assigned a new therapist.  It was the best thing that could have happened at that time.  We clicked personality-wise...Hailey responded to her.  Therapy through EI has been great ever since. 

Fortunately for us, Hailey has responded well with the parent-teaching model that our state uses.  We have hit a little plateau right now but it is because walking is super hard work for Hailey.  You can tell she is getting stronger every week but if you didn't know her and don't spend time with her, you won't see those changes in her.  Our EI therapist has agreed that the model works and we have worked in once a week therapy sessions into our IFSP (individual family service plan) along with our goals for the current 6 months. 

Up until recently, we only had private therapy once every other month.  We are changing that to once every two weeks.  Right now, we will see speech and physical therapy once every other week to work on walking and strengthening all the muscles involved and continue working on communicating and speech.  It is one hour of therapy and they both work with her at the same time.  I was quite skeptical about the model at first, but I love it!!!  They work great together and Hailey loves them both!  It works and I couldn't imagine changing it.  We will occasionally switch PT out with OT...they both work great with our ST.  I'm hoping that Hailey stays receptive to therapy. 

Another key to Hailey's therapy is something that most people don't even realize....her older brothers.  Her motivation is being with them...getting their stuff...playing with them.  She started pulling up to the couch to grab one of their DS games.  She started rolling to get to their crayons.  She army crawled to get to legos.  She stands and climbs over the top of them to give them kisses.  Those two boys are an integral part of her therapy that they are oblivious to it...let's keep it that way...the giggles and love that come from their play could melt an iceberg.

In the end, there is no right or wrong way to utilize therapies.  Every day...once a week...once a month...none at all.  Every child responds differently and every child learns differently.  Every family has to find the right balance for their family.  In the end, everyone wants what is best for their child so that is what we search to find!

So does this count as container play?  Taking an item out and releasing.

Playing peek-a-boo

Begging dad for banana pudding

Working on "uh-oh"...we can only get the "oh" part though!

I think PT/ST wiped this little girl out yesterday!

Yep...there she goes!

Definitely NOT what her therapists want to see!

My sweet baby

Therapy wipes this girl out every time!

Sunday, July 8, 2012

Practice Makes Perfect?

Now that we have two newborns in the born 3 weeks ago and one born just this week (still so teeny, tiny), we've decided we need to get in high gear with teaching Hailey a little bit about babies.  She's always been the baby so she isn't around them much.  We've been working on signing "baby", showing her how to be gentle and how to feed a baby a bottle.  We are proud to say that she did sign "baby" on facetime earlier this week with my 3 week nephew and his mom.  My heart fills with such joy watching her learn new things!

Thought you might enjoy seeing Hailey "care" for her baby...I think she might need a little more practice!

Is she kissing the baby or administering CPR?