Hurricane Hailey

I've said this more than once.  I truly believed Hailey would be a docile, quiet, wallflower type of child.  I don't know why, I just did.  There are no children in our family like that.  I believe it was truly based on her diagnosis.  I'm sort of ashamed by it.  I never thought it was possible, but I think Hailey is more active, more chatty, more inquisitive than both of the boys combined.

Last night we were all relaxing watching Charlie Brown Christmas...we were all chilling except for little hurricane.  She kept using our bodies as stepping stones to climb on top of the couch and cracking up laughing.  She succeeds every day in making a mess in every room of the downstairs.  I generally don't let her have much roaming area upstairs...I get tired of cleaning up after her.  She will occasionally pick up part of her mess and put toys back in their place, but it is always short-lived.  The toys get emptied as quick as they were cleaned up! 

I truly could spend all day every day following that girl around the house and cleaning up her messes.  I prefer sanity over following her.  I coerce the boys into cleaning some of it (with the "I cleaned your messes when you were this age.  Not it is your turn.") and I clean up after bedtime and during nap time. 

Apparently Lincoln Logs taste good.

Moving Santa across the kitchen floor.  I think she is checking to see if I'm watching.

Apparently she made such a mess in the other room that she needed more!

Her other favorite past time.....attacking brothers!

Emptying the books and the DVDs.

Don't you love toddlerhood?!?!?  I love every minute of it....the girl has spunk!

Post Thanksgiving..."Normal" Life

I've neglected my blog recently.  I think I poured so much into the blog over the month of October that I've encountered a writer's block!  I feel like I've talked about all the points that needed brought up about Ds.  With all of that out and me off my soapbox (until I need to again), it's just us...my family of 5.  Mom, Dad, two boys and a little girl.  A 3rd grader, kindergartner and a rambunctious toddler.  Basketball schedules, school functions, holidays, therapy appointments, runny noses, Christmas parties, gift purchasing, Christmas shows, homework...you get it.  We all do it in some way or the other.  It is just us...living our life...our "normal".

Thanksgiving was good this year, but different.  We didn't travel to Indiana this year.  It is only the 2nd Thanksgiving we weren't with our families.  Jason had to work...the downside of working for a business that is open 24 hours a day, 7 days a week, 365 days a year.  The weather was gorgeous.  I started cooking at 9 a.m. and I finished at 5:45 p.m. when we ate dinner.  I was able enjoy the weather with the boys while Hailey napped.  Dinner was quite tasty (yes, that is my opinion...no one complained and most of them enjoyed seconds and at leftovers for 3 days after) and we started decorating our trees in the evening.  We missed our families, but had a good day.

The boys tearing bread for stuffing...I had enough for about 20 people!

Christmas decorations up early because of the unseasonably warm weather.

Playing a little soccer waiting for Dad to get home from work.

Yes, everyone is thankful for that little peanut!

The boys have even started teaching Hailey how to unload the dishwasher!

Christmas decorations are different this year.  I've never changed my decorating because of the kids until this year.  Ian was always curious, but he stayed out of the decorations for the most part.  Or, if he did bother them, I don't remember it (mental block).  We didn't put any ornaments on the bottom 2-3 feet of the tree.  The boys decorated the trees so there are no ornaments higher than 5 feet either.  I don't have the heart to change them :-)  We've only left stuff within Hailey's reach that she is allowed to touch.  The Veggie Tales nativity scene, a couple musical plush from Hallmark, and her felt Christmas tree.  I first saw it on Pinterest and then Megan posted hers that she made for Ellie here.  I was motivated then to make Hailey one.  I'm not sure who plays with it more...the boys or Hailey :-)

Notice no ornaments at the top?

Hailey's felt tree...the ornaments are removable but the star and presents are hot-glued on.

The only "safe" decorations....she "dances" to them.  It is too cute!

The boys have been excited every morning searching for their elf "Bernard" every morning.  Hailey seems pretty indifferent to him.  We are gearing up for some of our annual Christmas traditions...Christmas parties, visiting Santa, Christmas programs at church....  I keep putting baking cookies and making our gingerbread house on the bottom of the list because the OCD in me isn't ready for the ginormous mess that they both entail.  Don't worry, we will still do them.  I just want to make sure we have time to enjoy it and not rush through it all.  The boys have so much fun with them and I'm sure Hailey will in time!

Thanks...

I had to end my pity party Monday because there wasn't room for it.  I needed to let it go because of Thanksgiving.  I have so much to be thankful for that I needed to empty the disappointment that my daughter isn't walking.  It seems silly...petty.  It isn't as if her value or worth is tied up in whether or not she is walking before 2.

So...onto more important things.  Since having Hailey, Thanksgiving seems different.  Not that I haven't always had so many things to be thankful for.  Last year changed me.  Worrying about Hailey when she was in the NICU because she couldn't breathe on her own.  Part of me believed for a few days that I would never get the chance to get to know this daughter I had expected.  I was afraid her brothers wouldn't get a little sister to torture and protect.  Watching Hailey struggle to stay alive through her heart failure and terrified during her open heart surgery, I was scared that we would lose this incredible little girl that filled such a large space in our family.

Having Hailey is like adjusting the settings on your TV...things are brighter...clearer...more vibrant.  She has made me more thankful for everything I've always had and the new things we now have.

This is my list this year (some more serious than others)....

1.    My husband - We have known one another over half of our lives.  He loves me unconditionally...through my panics, my quirks, my OCD, my worrying and my non-stop chattiness.

2.    Our families - They have supported us throughout the years even when they didn't agree with what we were doing or where we moved to.  They love our children as if they were their own.

3.  Our friends both near and far, old and new - They make me laugh, they listen to (or read) my fears and complaints.

4.  My local Ds community - Down syndrome was scary last year.  It was overwhelming.  They have shown me (or their children have) how great life is and how "normal" is all really is.

5.  My cyber Ds community - It is so nice to find a group of women that know exactly how I feel when I am frustrated or sad over something other people might find silly or non-important.  They celebrate Hailey's accomplishments with me (no matter how big or small).  Their support and advice has meant the world to me.


6.  The basics that so many of us take for granted....shelter, food, clothing.

7.  Brayden - my positive, give 100% all of the time child.  If everyone made friends and viewed the world the way he does, there would never be another war. 

8.  Ian - my active, funny, 5 going on 50 child.  You can be the sweetest and yet the most exasperating child I've ever met. 

9.  Hailey - my determined, smart feisty little girl.  You have taught me more in 20 months than I've learned in 20 years. 

10.  My husband's job.  It moved us closer to our families and it provides for our family.

11.  Our neighborhood.  We have such diversity here, but in the eye's of the children, everyone is just themselves. 

12.  My DVR...it allows me to watch my favorite shows at midnight while everyone is asleep and I'm working on laundry.

13.  FaceTime...It allows my children to see their family and tell them about their day.  It was also the incentive that pushed Hailey to scoot and crawl (granted she always looks for a face when speaking to anyone on the phone!)

I have 5 million more thanks, but it is now 1 a.m. and I have lots of cooking to do tomorrow and the kids will be bright-eyed and bushy-tailed in about 6 hours (or less!).

I know I've posted this pic before, but this is what my thanks is centered around.  They truly are my world.

Pity Party Over...

I have to admit.  Recently I have been down.  I've been going crazy over getting Hailey to walk.  (Statistically, the average age for a child with Ds to walk is 2).  Just like I went crazy for her to support her head...sit up on her own...get herself into a sitting position...army crawling...crawling...cruising.  See the pattern?  I "might" be goal oriented and a control freak.  You see, everything about Hailey challenges me in almost every part of my personality.  I'm not a wait and see kind of person.  I'm not someone who is patient.  I have a tendency to butt heads.  Not intentionally.  I'm just stubborn...head-strong.  Hailey is stubborn...head-strong.  Hailey is a go-getter.  She sees what she wants and goes after it.  Hailey never does anything that she doesn't want to do until she is ready to do it.  You would think that I would have accepted that by now.  She'll be 21 months old next week.  I've had time to adjust.  My head knows all of it, but my heart doesn't always get the message.  Last night we were all hanging out in the family room.  My husband had the Toys R Us ad on his lap.  Hailey saw it...let go of the couch and took 6 independent (not touching anything) to grab it.  Was she ready to make her Christmas list or did she just want to destroy it?  I'm not sure because I took it away from her after I tricked her into walking 4 or 5 more times for it.

I think I finally realized last night that it isn't up to me.  I can't will her to walk.  I can give her all the tools to walk and help her exercise all the body parts that need to be strong enough to walk, but I can't do it for her.  She has to want to...she has to be ready both physically and mentally.  So for at least now, I'm loosening the reins.  No, she's not getting a "get out of jail free card".  She's still going to work at therapy.  I'm still going to sneak in walking, kneeling and squatting into every activity I can think of.  I'm just not going to let the obsession of her walking overshadow my daughter.  Just as Ds does not define Hailey...whether or not she walks does not define how well she is doing.

Let's see how long this zen moment lasts for me :-)

I had the kids' pictures taken this weekend.  I don't have the images yet, but here is a sneak peek.  I'm excited to see how the rest turn out!

Communication & Speech

Unfortunately, children with Down syndrome not only have to battle gross motor delays, but most times also have speech delays.  Many insurances do not cover or do not want to cover speech therapies.  We have been fortunate so far that our insurance has not had an issue with any of Hailey's therapies.  We started speech therapy last year, not long after Hailey's first birthday.  I was skeptical at first as to what they were going to do or how they were going to help her.  Hailey's speech therapist is fantastic!!!  She actually has 3 siblings with Ds.  You can check out Jen's blog here. 

What not all people realize is that speech therapy is not "all" actual speaking.  It is about communication, labeling objects, learning concepts "over", "under", signing, and for some it is also feeding therapy.  One of my largest fears (yes, there were a lot of them) initially, was that Hailey would never be able to communicate with us.  To begin with, I used communication and speaking interchangeably.  A fellow blogging mom, Meriah, (you can read about Meriah and her family here) made me realize that speaking wasn't the same.  There are so many other ways that my daughter can communicate other than verbalizing her words.  Fortunately, Hailey has picked up signing rather quickly.  If her mom's signing vocabulary was more extensive, she would probably learn even more, but I'm not as quick of a learner!  Last week, she started signing "Daddy work" and home.  I need to actually figure out how many words she does sign because I have lost track!

In speech therapy last week, Hailey imitated lots of sounds for Jen, but she is getting to the point that she doesn't always want to do exactly what Jen and Abby want her to do.  Abby wanted her to sit on a ball and copy sounds, but Hailey decided that she needed to see her best friend (her reflection) and make the sounds in the mirror.  They generally don't argue with Hailey unless she flat out refuses (which knock on wood, isn't often).  She signed when she recognized a word.  She is doing really good with her flashcards and recognizing an object when given two choices.  Hailey will point at objects in books.  We are well on our way to communicating. 

She is communicating her wishes and wants at home and to others.  She will sign for "eat", "sleep", "milk" and even sign some two word phrases (Daddy work, Daddy's baby, Papaw's baby, milk please).  It helps ease those fears that I had in the beginning.  With the amount of actual words she says, I truly believe Hailey will talk...I think she might just do it to keep up with her brothers and her mom...sorry Dad!!!

Last weekend, we traveled out of town for dear friends' wedding.  When we returned, I asked Hailey if she was happy to be home, she signed home and then said "home".  It was the sweetest sound in the world.  It comes a close 3rd after "momma" and "dadda".  She drags the "o" a little so it comes out "hooome", but it is all there and I keep asking her to say it because I love it so much (and yes, it made me cry)!!!

Here are photos of Hailey playing with one of her babies.  It was actually homework for speech therapy a couple of months ago.  Thank goodness there are no real babies in the house!

No, this wasn't taught...I think we might needed a weighted baby.

I'm not sure what was so funny.

Thank goodness this isn't a real baby!

Still laughing!

Patting the baby's back.

Feeding her baby.

Making the baby play patty-cake.

Bottle confusion?

Wrestling/Tackling

Apparently the thing to do on a cold, rainy Monday is wrestling and tackling your older brother.  I think she's finished her gross motor work for the day.

Working on eyes, nose & mouth

Love this one!

The World of Toddlers

Life here has finally fallen into routine again.  We've adjusted from the soccer season being over and basketball starting.  We are at the end of the year so most of Hailey's annual doctor appointments are still months away (we generally start the year with a bang).  We have a couple more therapy sessions and then we are on an 8 week break at the request of Hailey's therapists.

Our days are busy...aren't everyone's?!?  When we are at home, I'm amazed at how busy it is  now.  I was afraid Hailey would be sedentary, unengaging, dare I even say...lazy.  Oh my heavens...where on earth did I get that idea?!?!?  This girl is driving me crazy!  She is all over the place and into everything.  Cabinets, trash cans, diapers, bathrooms, boys' backpacks, countertops (she can now reach them and see the top of the table), computers, cameras, plants, closets, books, DVDs, etc.  I think you get the picture.  No matter where she is, she will find trouble and everything that she shouldn't have.  It drives me mad some days.  There are days I think my sole purpose is to clean up after the little hurricane.  She is quite defiant these days, too.  She doesn't listen to "no" or "stop".  She pouts when she doesn't get her way or you tell her "no" and "stop".  Hailey does whatever she wants, when she wants.  She will not do something until she is ready.  We are currently experiencing something I couldn't see when we were given Hailey's diagnosis.  It seemed to be a mountain so big and so high that we would never be able to climb it to see the view.  I never thought we would have days and days and days where Down syndrome wasn't thought of...wasn't talked about (unless online boards, blogs, etc).  It's just Hailey...my toddler.  She's driving me crazy and I love it!!!

Hailey napping in the car....I refuse to wake a sleeping toddler.

 Here is a video of Hailey playing with Ian before school today.  Apparently, saying "boo" is funny!

I hope everyone has a good weekend!  We are going to a wedding of very dear friends of ours!

Hidden Therapy

Today the boys were out of school for election day.  Most of their school are used as polling locations.  I promised them I would take them swimming.  We don't go often...it seems to be quite the chore in the colder weather to take them to swim.  Too much packing and preparing.  The boys are very good about going for an hour or two and not fighting me when I say it is time to go.  I know they would love to stay longer, but Hailey only makes it about an hour and half and then she turns into a pumpkin.

I seized the opportunity today to squeeze as much therapy and exercise into her swimming as possible.  I've been a little frustrated with her lack of desire to walk since she started wearing her orthotics.  We did a lot of walking in the water today.  She generally will not walk with our hands at home...it needs to be her idea to walk and that type of walking apparently is not her idea.  I then made sure she was in deep enough water that she could not sit down and she cruised the wall of the baby pool for about 20 minutes.  She did quite a few squats along the way because she kept trying to sit down and then realized it was over her head.  I later had her stand against the wall in the wave pool with the waves on.  I was actually impressed at how well she was staying upright while the waves hit her.  After about an hour, she was tired and hungry so we called it quits.

I'm hoping tomorrow while Hailey is at her actual therapy session, she will remember walking today and realize it isn't something that is going to end the world and she is capable of doing it.  I'm definitely not holding my breath on that one.  Gross motor has always been a strength of hers up until the last several weeks.  I'm not going to complain too much because she is progressing with other things.  Today she actually ate off a plate and didn't throw it!  I think Ian was still throwing plates at this age.  Her signing and speaking is still taking off.  I'm amazed at her capacity for learning new words.  She has been signing two word phrases...milk please...Daddy work...more please...mommy baby.  She signs words as she hears others use them.  Today she saw a CPR dummy and signed "baby".  I'm trying to ease up on my obsession for her to walk when her verbal and language skills are exploding.  I'm a little type "A" and OCD, so it is hard for me to let things take their normal course!  We've been on this journey for 20 months, but it is still difficult to realize I'm not in control and I can't control it all.

On another note, we will have no political calls tomorrow!  Yay!!!

Here are a few pics from today.  It is hard to get any of the kids in the water.  They don't like to sit still long enough!