The Hailey Herald

The Hailey Herald

Wednesday, August 29, 2012

Like a Rollercoaster

What goes up must come down....with highs there have to be lows.  Yes, I was singing my daughter's praises yesterday.  Today was my off day.  Hailey had PT this morning.  Our typical therapy model is to combine pt and speech together.  I was leery about doing the therapies together but it has worked great and Hailey thrives with it.  Last week, her pt was on vacation and today her speech therapist was out of town so we did a full hour of physical therapy today.  Hailey did good...I'm very proud of her.  I figured she would give up about halfway through.  She did great until about the last 5 minutes.  

There was a student with Abby (her therapist) this week.  She asked if Hailey was about 9 months old...nope...not close.  Abby was great all through therapy, pointing out Hailey's strengths and I'm happy to say there were quite a few.  Hailey was cooperating.  Therapy was going good until...we started talking forward....  Her therapist said she doesn't look for Hailey to walk before two and only anticipates a couple steps by then.  She then followed with saying she would like to get Hailey fitted for braces at her next appointment in two weeks and she would have them in 4 weeks.

We exchanged good-byes and said we would see one another at the Buddy Walk.  Hailey and I headed to the car...I buckled her in...loaded in the stroller...climbed in the front seat.  It was there that I broke down.  I sobbed.  I'm not sure what triggered it.  In my mind, I've not been anticipating Hailey walking before two.  That is the average age for children with Down syndrome.  I anticipated braces...we talked about them now for a couple of months now.  So why the tears?  I really don't know.  I was hoping that Hailey would beat the average age.  I was hoping that her pronation (the rolling inward of her ankles) would get better and she wouldn't need braces.  I'm not in the mood to make the long string of phone calls to the insurance company and providers to make sure that insurance covers even part of them.  I am bummed that Hailey has something more for people to stare at her.  I am sad that the girl is fights harder for everything she does has to deal with more.  I cried for about 10 minutes or so.

That was 6 hours I am better.  Is it that big of a deal that she has to wear braces? is better for her to get support.  Hopefully, it makes walking easier for her.  Hopefully they will make her stronger.  Her not walking until 2....just have to deal with that one.  I really wasn't anticipating it any earlier.  This girl was fighting for her life a little over a year the grand scheme of things, this isn't major.  It is just sometimes the little things sting and can set you off.  

We will take the same approach with this that we have with everything since the day she was born.  We take each obstacle and victory as they come and we do everything in our power to help Hailey (and all our children) become the best and strongest person she can be.

Concentrating on her wooden puzzle

Taking care of her baby

I promise I didn't teach her to hold the baby by her hair!

Snacking on her favorite treat right now...veggie straws

Apparently she wants to take these "to go"

Oh how I love this girl!

Tuesday, August 28, 2012

18 months of sass

18 year and matter how you put it, we are in the midst of toddlerhood in our household.  Most people still comment when talking to their children, "yes, look at the baby" and I'll admit, she does look more babyish than some 18 month olds....but that is where the "baby" ends with this little one.  After having two other children, trust me....the attitude, independence and sass that goes with it is a true toddler!  I love it!

Now that is just my opinion...I know most of the world and medical community don't agree.  I could see it in the nurses face as I answered the questions for an 18 month old.

Does she run?   This one almost made me laugh out loud!
Can she say 20 words?  Between signing and speaking she has 20 words (you could tell the nurse wasn't expecting that answer)
Can she speak 2 word sentences?  She signs 2 words together (more milk, eat please, etc)

On a daily basis, I don't "see" the delays that Hailey has.  Yes, I have two other children and yes, they were typical developing.  She is just Hailey.  It is when we are with other children her age or we have to ask questions at the doctor's office that they are pointed out to me.  Generally, that makes me sad and depressed.  This week, it didn't.  Have I grown?  Have I accepted it?  Not sure...both maybe.  For right now...Hailey is Hailey.  She has her strengths and her limitations.  I can't will her to walk.  I can't will her to speak.  I can tell you that she is working harder than anyone I have ever seen to accomplish things.  I am extremely proud of her and always will.

Enough of what my little girl can't do...let's talk about what this 18 month old can do.  Her stats this appointment were 22 lbs and 30 1/4 inches long.  I think that is a big jump from the last appointment but her pediatrician thinks she is still staying on her growth curve.  She is 24th percentile for weight and 15th percentile for height.  (We still need to have a blood draw done to check her thyroid function)  She is getting better at pointing and recognizing common objects on flashcards.  She is cruising furniture for every item she isn't supposed to have...ipods, phones, pokemon cards, etc.  She loves standing at the backdoor watching everything going on in the cul-de-sac.  Her push toys are now becoming more of a means of transportation than a couple steps here or a couple steps there.  She is getting better at "feeding" her baby doll but still prefers to pretend it is hers!  Little miss still refuses to use a straw but is getting better at her avent 360 cup.  She is up to 7 spoken words and 14 words signed.

We have a DVD player hooked up on the back of the seat that Hailey faces in the van (before anyone yells at me about children before 2 having screen was that or her screaming at the top of her lungs....I had to cave).  She watches signing time videos.  The other night it was just her, my husband and I in the van.  The word was baby doll.  We heard her say doll and then tried to sign it.  I was so excited.  I love it when everything clicks...even if it is just every once in awhile!

Hailey still likes to pull hair and wrestle with her brothers.  She likes to empty the DVDs and throw them across the family room.  She has learned how to make her bottle spill milk all over the floor and when she is finished with her sippy cup or any other food that she is finished with, they get hurled off of the highchair.  She doesn't like pigtails or siting still for Reds games.  She loves waving at strangers (and shame on those who just stare and don't return the wave or a smile) and blowing kisses.  She uses a head tilt (think puppy dog) when you tell her no or she is trying to get her way with others (it doesn't work with mom or her EI therapist).  Her favorite two words are dadda and boo (peek-a-boo).

Hailey is not walking nor does everyone understand her signs (some you need to pay attention to context) or her words all of the time.  Right now, I keep pushing her to be the best she can be and I am positive she will walk as soon as she can!  In the meantime, I need to get my water glass and remote from her before she does some damage and listen to her giggles!

She looks so serious with her book.

Sound asleep!

Asleep again at Kings Island

Watching the Reds/Cardinals game

My oldest and youngest

Her throwing has gotten better....worst for clean-up though!

She's perfect!

Monday, August 20, 2012

Life...gloom & doom or rainbows & unicorns?

So I recently found out that moms of children with Down syndrome get criticized for portraying only the positive side of our lives...that we glorify it.  This struck me as odd.  First off, why do others care how I portray Down syndrome?  I wonder what people would rather me write.  That my life is horrible.  That we are hermits.  We rarely go in public for fear of what others think.  My "typical" children are neglected.  They get no attention.  We have to focus all our time on Hailey.  We spend hours and hours at appointments and spend all our free time doing therapy.  The boys are miserable and feel cheated because their sister holds them back.  Would others like to read about sadness, depression, and the black cloud that lives over our world? are NOT going to find any of that here because it would be false and inaccurate information.  I may live in the land of rainbows and unicorns, but I've always been honest.  I don't want the world to believe that our lives are really like that because it is not.

Yes, I was sad when I first received Hailey's diagnosis.  I had a little girl in the NICU and I didn't know what her diagnosis meant.  I didn't know the basics of it all.  I didn't know which direction to go.  After breathing...and thinking...and praying...and researching, I realized the outlook wasn't grim.

Now, 18 months into our precious little girl's life, I am embarrassed at my initial reaction.  I don't write that our life is miserable because it is not.  We live our life the same as we did before we had Hailey...or wait...maybe we don't run quite as much, but it isn't because Hailey has Down is because taking all 3 children every where can get a bit chaotic!  My boys do not lose out because of Hailey.  It has opened a whole new world for them.  I won't get into all the character lessons they learn right now.  They actually get to do a lot of activities BECAUSE of Hailey.  Cook-outs, swim parties, Christmas parties, the Buddy Walk, etc.  I have very social children.  They love being on the go.  They love meeting new people and the opportunity to make new friends.  Do I have a little less time to spend one-on-one with them?  Yes...but show me any family that doesn't juggle that when having more than one child or having a new baby in the family?

Does Hailey have more appointments than the boys?  Yes, but we are very fortunate.  Right now we are in preventative mode.  We keep her eyes, ears and heart in check.  We have follow ups with those specialties to keep her in tip top shape to optimize her life and her learning experiences.  But if you thought your typical child had fluid in his/her ears, wouldn't you keep up with audiology?  If you thought she wasn't seeing, wouldn't you keep your follow-ups with ophthalmology?  If your family had a history of thyroid problems, wouldn't you make sure your child had regular blood tests?

Does Hailey have therapy to help her with other areas of development?  Yes.  Don't I take all the kids to the boys' soccer practice...swim lessons.  If therapy is similar to exercising, is it really any different than their practices and school functions?  If she has to sit through all their stuff and we continue to do all their stuff, shouldn't they do the same?  Isn't that you do when you are a member of the family?

Do we spend a lot of time doing therapy at home?  Not really.  It isn't much different than doing homework with the boys.  We might have some structured play, but I did that with the boys when they were younger, too.

Are we sad...depressed?  Don't get me wrong, I do get down from time to time because at this moment, Hailey is a little behind typical kids with gross motor.  But I ask all parents, hasn't there been something that your typical child didn't do as well as other children?  Haven't you gotten upset or sad about something with your typical child?  Do I spend my days in despair?  No!

I can say honestly that there is more laughter, more smiles and more love in our house than ever before.  I truly believe Hailey completes our family.  Each of us play a role and together we fit together perfectly.  We have our ups and our downs, but show me a family that doesn't.

I've been told that Hailey's smiles and waves make people's day.  That she has a smile that could stop traffic.  That when she smiles her entire body smiles.  These are people that don't get to see her every day.  We are privileged enough to experience great joy and love from this beautiful little girl every day.  Why would I portray her in a negative light?

Saturday, August 18, 2012

Can It Ever Be This Simple?

I had an interesting conversation this week with a neighbor (we'll call her Betty).  She asked how Hailey was doing.  My basic response is "good".  I told her that Hailey has strengths and weaknesses.  Some things she is on track and others she is not.  She seems to be picking up sign language and has several words that she says regularly.  She eats like a champ and we have renamed her "hurricane" because she leaves a path of destruction where ever she goes ;-)  I did tell Betty that gross motor is our biggest delay right now because most children are walking by the age of 18 months.  Hailey is cruising around the house with walking toys and sometimes our hands, but is very reluctant to give it a try without either.

Betty asked if we thought Hailey wouldn't walk.  Obviously, I responded that there was nothing that gave us that indication and we take everything else as it comes.  She then asked, "So long-term, what are you focusing on and what are your concerns?"  I told her that we focus on Hailey's intellectual delays and work on Hailey becoming a compassionate, happy, loving young woman.  I want her to have her own set of dreams and then follow them.  (I can't project my dreams onto her...I can just help her be the best person that Hailey can be). 

The response that followed was very simple..."oh...that's it".  Betty said she held her typical daughter back in school a year and her daughter still struggles academically.  She commented that no one can predict the future for her typical children.

When a friend of mine first explained Down syndrome to her daughter, her daughter had simple questions...will Hailey be able to ride a bike and will she be able to play with the other kids in the neighborhood?  Once the little girl received her answer of "yes", her worry seemed eased and she was content.

All this rambling actually does mean something...I wonder how differently the world would view people with Down syndrome if they saw it as simply as these two people did.  No, not all the health conditions and concerns that go along with Down syndrome are always simple, but none of us can predict the future for ourselves...for our typical children.  We don't put limitations on them.  We don't look at them and condemn them to a life of dependency and meaningless jobs.  Why do we do that to people with DS and intellectual disabilities?  How different would the world be for them, if everyone viewed it as simply as these two individuals did?

Here are a couple pics for those of you that enjoy Hailey's odd sleeping positions and odd nap places:

Hailey's newest entertainment...making faces, waving and laughing at her reflection in the mirror.

Taking her baby for a stroll

Waving bye to her brothers
Can you tell that she thinks she is cute?

Friday, August 17, 2012

How Can It Be?

My baby boy turned 9 last Saturday.  It is hard to believe that I started this journey of parenting over 9 years ago.  My pregnancy was different with Brayden.  Everything was "perfect" until about 32 weeks when my blood pressure started spiking.  The OB feared per-eclampsia, but it turned out to be pregnancy induced hypertension so I started taking medication.  I was induced right at 40 weeks.  He was stuck so we had to use the vacuum.  He came out looking a little like a conehead at 7 lbs 15 oz.  I was in labor 17 hours and boy, I loved that epidural.  We were so green when it came to parenting.  We had lots of practice with babysitting, nieces and nephews, and younger siblings.  But...we all know that practice is nothing like bringing your own newborn home!  The day we took him home from the hospital, we loaded into the car very apprehensive.  I remember looking at Jason and asked him, "Are they really letting us leave with him?"  I needed someone with us...I needed a manual.  Unfortunately, we didn't get either.  Luckily, Jason mom and sister stayed with us for a week after Bray was born.  It was nice not focusing on dinner and cleaning.  I just focused on recovering (how could a little baby do that much to your body!?!?!) and my new baby boy.  Breastfeeding was a nightmare....I cried for a couple of days over that.  I finally decided to give up and that same day, guess who started nursing. 

I learned so much those first few months and years when it was just the 3 of us.  I knew that our family wasn't complete and God agreed with Ian and Hailey following.  I thought I knew enough about parenting.  Both children after Brayden proved that thought wrong. 

There are days that I think we owe Bray a few apologies for the mishaps and mistakes we made.  Nah...part of growing up ;-)  I'm very proud of my baby...looking forward to what the future holds for him!

Bray & his buddies having lunch

Hailey playing around while the big kids eat.

Proof that we still don't need a dog ;-)

Tuesday, August 14, 2012

Mini Vacation

My husband travels sometimes for work.  He had a quick trip last week to Sandusky, OH (along Lake Erie)...the kids and I tagged along.  The boys love any chance they get to stay in a hotel and for it to be a Great Wolf Lodge was just a bonus.  The kids all love the water, staying up late and eating out.  So, while Daddy worked, the kids spent a few hours swimming, sliding and splashing. 

While playing with Hailey in the kiddie pool, a mom approached me and asked how old Hailey is.  In my mind, I was already building up my defenses for her response to my answer of 17 months.  Generally, it is either one of shock or they have a connection with DS.  Her response was simply, "My daughter is 4".  I turn to look at her daughter...long brown hair and running all over the place.  Her daughter looked at her grandpa and said that the pool was for babies and she needed to ride something bigger.  I had to laugh.  Being in the midst of frustration over Hailey not drinking from a straw and no where near close to walking, it was nice to see a young girl a little older than Hailey.  It gave me a little renewed hope that yes, Hailey will eventually get hair and yes, she will eventually walk (and the little girl did a fantastic job at communicating her wants).  Yes, I know that sounds silly....I know that will happen, but is nice for the visual sometimes!

Thank goodness she slept part of the way.

We generally don't hear a peep out of this one.

I don't even ask questions with him sometimes!

Starting the bear crawl.

He's getting too big for his momma.

Can you tell she thinks she is funny?

The look of defeat

Giving Dad "the look"

Hailey did surprise me a little in the water.  I don't like the fact that she will continue to go deeper and deeper without fear.  I was happy that she was at least spitting out the water while the water was going over her face.  She did start bear crawling because the pool bottom and the tile surrounding it were hurting the leg she keeps on the ground while she crawls.  It was funny to watch.  She climbed the steps to the bear slide on her own, but did need help getting down the slide.  She then crawled back around to go again.  Hailey had her fill of the water after about an hour so she watched the boys climb and slide.

We had dinner at our favorite local pizza place and then headed to walk along the lake.  We looked at the boats in the marina and watched the rides at Cedar Point.  Lastly, we stopped at the local dairy for ice cream.  We might have had some overly exhausted children that night, but they were bright-eyed and bushy-tailed the next morning to swim a little more while Daddy worked and before we headed home.

This cracks me up

I think Hailey is scaring this little girl

Playing peek-a-boo while waiting for Daddy

It was a nice little getaway for the kids before the boys start school and soccer.  Dad would have preferred to not working, but oh well...

It was a beautiful drive home.