The Hailey Herald

The Hailey Herald

Monday, September 9, 2013

Eyes, Ears, Nose & Throats

Doctors, doctors, doctors.  I'll be totally honest, before Hailey was born, I avoided all doctors as often as possible.  Yes, I kept all of my appointments when I was pregnant because it involved another person.  I have always had "white coat syndrome".  My blood pressure jumps 20 points just walking into a doctor's office. 

Having Hailey has pushed me out of that comfort zone.  Hailey has been relatively healthy.  I always say relatively because most people freak out about her going into heart failure and having open heart surgery.  I have said before we are fortunate that Hailey only had open heart surgery.  I get a lot of looks for that comment.  Yes, it was serious.  Yes, it was the most scary thing I have ever gone through.  No, I don't wish it on anyone.  Heart failure like hers doesn't happen overnight.  It is a gradual thing that we watched happen over a couple of months.  It is a common procedure and Hailey had no complications.  She was in the hospital for only 76 hours...including surgery time.  It was fixable and it requires annual follow up appointments with her cardiologist.  She should never have another issue in regards to her heart defect. 

That being said, the key to keeping her healthy is maintaining her health care.  It does include going to different specialties every year or every 6 months to make sure everything is still working properly.  In the past couple of weeks, Hailey has seen both the ENT (ear, nose and throat) and her ophthalmalogist.

Let me start with, Hailey HATES going to the doctor.  Hailey hates everything but leaving the office!  Ophthalmology is a huge challenge when she needs her eyes dilated because the appointment is twice as long and she has to behave twice as long!  We have noticed that her left eye crosses occasionally.  After a long appointment, we do not have glasses yet but we need to return in 4 months.  He did see the crossing, but patching won't work.  She is slightly near-sighted, but that is not uncommon for children her age.  If I told him she keeps hats on and she LOVES wearing sunglasses, he would have gone forward with glasses because they wouldn't hurt anything.  However, she HATES both and I would be replacing and searching for glasses every 5 minutes, we have tabled glasses for awhile.  The eye crossing is NOT affecting her vision so glasses aren't a necessity at the moment.  We'll see what the next appointment brings.

Last week, we went to her ENT appointment.  I think that the scheduling department thought I was crazy when they asked what was wrong with Hailey and I responded with "nothing".  The majority of the children with Ds that I know have seen an ENT by this point.  I actually was starting to worry that Hailey had not seen one and I wanted to make sure that we were not missing something.  Obviously, hearing is a key component to Hailey's speech.  We don't want to take a chance with it.  I loved Hailey's ENT!  He watched her the entire time we talked about her health history.  He seemed perplexed as to why we were there, too.  I explained and he understood.  Before examining her, he said that he didn't expect to see any issues.  She babbled nonstop and he understood several words that she had said.  Her tonsils were a 2 out of 4 which he said was good and not considered large.  We moved to the microscope room to check out her ears.  Her canals are not teeny tiny like a lot of children with Ds.  He agreed that our pediatrician should not have an issue seeing Hailey's eardrum.  He had to clean out a little bit of wax and then had a perplexed look on his face.  The ENT wanted to have a tympanogram on both ears.  The audiologist didn't get the entire order so they did both the tympanogram and the hearing test.  They assured me that we wouldn't be charged for the hearing test because it was their error.  The fabulous news is that Hailey did great with the hearing test.  The tympanogram was inconclusive on her right side.  They didn't get a great reading.  It could have been Hailey not could have been a little bit of fluid behind the ear drum.  The doctor said that it isn't a concern because of the results of her hearing test (he probably would have ordered it after the results of the tympanogram anyway!).  It is not affecting her hearing.  We go back in a year.  So....we added two more appointments onto 2014's calendar. 

These pictures have absolutely NOTHING to do with her appointments, but I had to share.  Last night, I was making dinner and I hear a "thump".  Hailey threw her baby down and disappeared.  She reappeared with a diaper and the wipes.  She sat down and attempted to change her baby's diaper.  Neither of the boys ever had a doll so this is new territory for us :-)  It was the sweetest thing. 

Apparently, Hailey's face needed wiped, too :-)

A little blurry, but she even threw away her diaper and wipe when she was finished with it all!

Saturday, September 7, 2013

Our 2nd Buddy Walk

This morning, I opened Facebook to see post after post of friends saying how excited they were to be attending the Buddy Walk today.  It made my heart swell with love and pride.  Three years ago, it wouldn't have meant as much...three years ago, I didn't know any of them, but one...three years ago, I wouldn't have even seen those posts.  So many people have entered our life since Hailey was born.  They all entered my life because Hailey sports that extra chromosome.  It is the bond that brought all of us together.  Our circles would have probably never passed if it wasn't for Hailey being born or their loved one being born with Down syndrome.  My life is richer because of them.  I have met some fabulous people because of Down syndrome!

Today our schedule was "over" full.  Both boys had soccer games at two different locations in town at 9 and 10 and the Buddy Walk started at 10.  Originally, we thought we were going to have to miss the Buddy Walk this year.  I was upset.  I've looked forward to it since last years.  We finally decided that Hailey and I would take Ian to his game and we would leave at half time.  The three of us would book it downtown and get there shortly after the walk began.  We wouldn't miss much.

I'm so glad we squeezed it all in!  A dear friend and her three children drove up from Lexington to walk with us.  She has a gorgeous little girl with Ds as well.  They joined us last year and are going to try to make it an annual event. 

Cincinnati's Buddy Walk is one of the (or the largest) Buddy Walk in the country.  I wish I could explain the feeling of seeing thousands of people there to celebrate one thing....Down syndrome.  Everyone  is there because they love some with Ds or someone with Ds has touched their lives in some way (and then there are some high school/college age individuals getting their service hours in, but that's is a fabulous event for them to see!!!).  It takes your breath away.  The love washes over you.  It is so overwhelming that it brings tears to my eyes.  It makes me so happy!  The walk is short.  About a mile.  There are food vendors, drinks, DJ, dancing, crafts for the kids...a giant party to celebrate Ds. 

We saw lots of familiar faces, but I think I'm going to have to call out my favorite....the Wonder Women running around at the Buddy Walk.  I think I gave one of them an odd look at first....who is dressed up like Wonder Woman...was the thought that flashed through my head until I got closer.  It was one of Hailey's therapists from the Thomas Center (the Ds clinic) at Cincinnati Children's Hospital.  It was her physical therapist.  Hailey was a little apprehensive at first...not sure if it was the headband or the sunglasses :-)  Then she bribed her with beads...Hailey has always loved her bling!  A little later, we ran into her speech therapist dressed in similar attire.  We are so lucky to have that group of women.  Yes, we pay them for therapy, but they go above and beyond for our kiddos.  They love their job.  They love our kids.  You can see can feel it!

So later as the day winds down, I will tuck in my 3 beautiful active children, I will remember seeing all those smiling faces, the people cheering, the band playing, the volunteers giving their time.  I will still feel the love of the Buddy Walk today.  I will thank God for the path he has put us on.  Some things that you originally perceive as the worst thing in the world...opens your eyes to the most beautiful experiences...most beautiful people...that you have ever seen!

Do yourself a favor...make an effort to participate in a Buddy Walk somewhere, sometime.  I promise you, you won't regret it!  I'm sure you will see Wonder Woman and Superman...some in costume and some not :-)

Hailey decided Joella was her new friend.

Apparently Joella's big sis, Laney, had an empty lap that needed filled.

Poor Isaac was next :-)

So sweet!

The day's activities have caught up to them.

This is one tired 2 yr old!

Have a nice nap, Hailey!

Friday, September 6, 2013

Deciphering Behaviors: Down Syndrome vs Typical

That is where we are at now with Hailey.  For some reason, we cannot remember "terrible" twos with the boys.  We visited family last weekend and we have two nephews that are younger than Hailey.   My daughter lives in the world of older brothers.  She doesn't have to share her stuff with anyone and when she picks up something of the boys, they grab it and yell "no". well do you think that translates when she is with others.  Yep, you guessed it :-)

So Hailey loves seeing her cousins, but spent lots of time grabbing toys from the boys and telling them, "no, no, no, no".  She also has a habit of throwing toys.  Unfortunately, those flying toys sometimes made contact with my nephews' heads.  Luckily no one was hurt.  If a toy gets put down, beware...Hailey grabs it immediately and it becomes "hers".

I felt like all weekend I was removing Hailey from the boys because she wasn't playing "nice".  It was exhausting and I felt like I was always on guard for her behavior.

After speaking with a few other moms of children with Down syndrome, Hailey's behaviors are rather typical for a 2 year old with two older brothers.  She repeats what she sees :-)  The part that Ds plays in it seems to be her understanding of "no".  She knows the word "no".  She uses the word appropriately.  The part she lacks is the realization that disobeying "no" results in consequences.  Hailey doesn't comprehend that if I tell her "no" throwing that she will get in trouble if she disobeys.  It is definitely going to be frustrating until she does "get" it, but she will get there.

Until then...we have LOTS of fun typical 2-year old stuff going on in our house :-)

Lesson learned by big brother....never leave anything open where little sister can reach!

Hailey playing with the big kids

Trying to sing Happy Birthday before celebrating her aunts' birthdays
 It's things like this that I feel like a new mom.  It is hard to decipher what is typical and what is due to her having Down syndrome.  It is frustrating sometimes.  For the most part, we parent her like we did the boys and adjust as needed.  At this point we would put the boys in time-out.  We've tried a couple of times, but it is definitely not effective at this point.  We generally remove her from the situation for a moment and then make her go back and reinforce.  Either have her apologize or have her clean up.  Little by little, we will figure this out :-)

In the meantime....Hello Terrible Twos!!!

She likes to make herself at home :-)

Apparently, reading with a flashlight is cool!

Papaw gave them all flashlights.

Poor Landon looks scared of Hailey!

She looks guilty and he looks annoyed.

Now onto Jaxon.

The boys look annoyed at the attention hog in the middle.

She will sit for hours if someone will read to her.

Thursday, September 5, 2013

Good Days & Bad

Overall, Hailey is an easy child to parent.  Her tantrums are less.  She doesn't get too frustrated at much.  She can be redirected.  She's stubborn, but she doesn't have a temper.  She is happy 98% of the day.  Most of the day Hailey chats away, brings books to be read, hands you a baby to hug or gives you princesses to make dance.  Hailey is self-motivated.  She always wants to climb higher, walk faster, and repeat more.  We are fortunate.  Hailey has been progressing and is relatively healthy.  Most of her doctor appointments are preventative medicine.  Trying to be proactive rather than reactive.  We see most of her doctors once a year.  The saying, "it takes a village to raise a child", is no understatement with Hailey.  She has her pediatrician, cardiologist, ophthalmologist, otolaryngologist (ENT - ears, nose & throat), speech therapist, occupational therapist, physical therapist and audiologists.  That's a lot of "ists".  We are happy with all of them and confident in their care of Hailey.  We also have a coordinator with the county's early intervention department and a developmental therapist through the developmental disabilities agency. 

Even with that team of medical professionals, family and friends, I still have mental breakdowns from time to time.  Early into our journey with Ds, they happened frequently...once a day, then once a week, backing up to once a they happen about once every 6-9 months.  I had one hit last week (before that, I don't even remember when the last one was).  There are very few rational thoughts that run through my head during them.  There is no talking me out of my irrationality.  They are filled with tears and anxiety.  This last one went something like this....
I'm tired of being an adult
I'm tired of thinking about homework and laundry.
I'm tired of worrying that Hailey won't be successful because of something I did or didn't do
I'm tired of bills
I'm tired of therapy appointments
I'm tired of worrying about the cost of therapy appointments
I'm tired of doctors appointments
I'm tired of feeling like I don't know how to raise Hailey
I'm tired of feeling that no one understands the worries and fears I have for Hailey
I'm tired of worrying that Hailey won't be loved by others
I'm tired of worrying that people won't understand Hailey
I'm tired of worrying that people won't get to know Hailey
I'm tired of worrying that Hailey won't have friends...she will get picked on...she will be excluded.
I'm tired of worrying that Hailey won't find a job
I'm tired of worrying that people won't "see" Hailey and her personality...that others will only see Down syndrome
Will Hailey be okay after my husband and I are gone?
Will the boys resent Hailey because of Ds?
I'm tired of worrying that scientist are focusing so much on getting rid of Ds that they won't look into benefiting the lives of people that do have Ds.

See what I mean?  A lot of it is irrational.  Most of them are valid thoughts on their own...difficult to process all at once and actually crazy to deal with at once.  They are paralyzing all once.  They are suffocating...heavy.

I talked to a few friends throughout the day.  I had one tell me to stop freaking out and she wasn't about to feed my anxiety.  One listened.  One knew exactly what I meant because she also has a child with special needs.  Once I listed out all these fears and worries, I had to laugh because no one can tackle it all at one time.  I can't worry about everything that may or may not happen to Hailey and I truly need to take one day at a time.  When the worries were out in the open, they lost some of their power.  The weight lifted.

So as quickly as my breakdown was gone.  Some of the fears and worry always lie deep within, but I keep them at bay.  If I give them power, they take up too much time and thought...and I miss what is right in front of me.  Three fabulous kids...funny, smart, loving, active...and a wonderful husband.

This is the look I got for telling Hailey "NO" after she turned off the XBox.

Drama child

What's not to love about this face?

This is the look you get if she thinks you are taking her food.

We fight this on long car rides...She gets bored.

Waiting on the bus to bring big brother home.

Her faves...the ingredients of a burrito bowl...lime rice, avocado, black beans...yum!

To be 100% honest, I almost didn't write about this.  Too many people will read it and think, see that is what life is with a child with special needs.  They don't realize typical or atypical...parents have irrational thoughts and concerns about their children.   We's what you do when you are responsible for others.

Life is back to normal and I'm living in the world of rainbows and unicorns :-)

Accidents Do Happen

We had just returned from Disney World.  The boys were planning on squeezing out every second of their last couple of weeks of summer.  Jason had just came home from work.  I was on the last 5 minutes of dinner.  I decided to put Hailey in the booster seat instead of her highchair.  I sat her in it because she was whining in the kitchen.  I turned to stir my mushroom sauce and then I heard the thunk followed by the blood curdling scream.  Hailey had fallen out of the booster.  The boys were freaking out.  I scooped her up and sat on the floor.  There was blood everywhere.  Hailey was so upset that she was borderline hyper-ventilating.  She was scared and she was hurt.  Jason took over with Hailey.  He handles emergencies and blood much calmer than I do.  I called the neighbors to take the boys and we headed to the urgent care.  Children's hospital has an urgent care about 10 minutes from the house.

Once we got there, they said there was about a 45 minute wait.  I asked if a nurse could come look quickly because there was just so much blood and it wasn't stopping.  They called us back less than 5 minutes later.  The nurse came in and about 5 minutes later the doctor came in.  While waiting, Jason and I finally discovered the cause of the bleeding.  Hailey had bit her tongue...about 2/3 of the way across.  I almost gagged and had to look away.  The doctor explained that most of the time they do not repair these types of cuts on tongues.  It hadn't broken the boundaries, but she wanted to verify with the dental clinic at Children's downtown.  She came back about 10 minutes later and said that they wanted us to go downtown for stitches.  They would call ahead and we wouldn't have to wait since they were sending us there.

We ran home to reassure the boys that Hailey was okay and to make sure our wonderful neighbors could keep the boys overnight.  We changed Hailey out of her blood covered clothes, grabbed phone chargers and headed downtown.  The ER was quiet...who knew Mondays were quiet in the ER.  We were back in a room in about 5 minutes.  I think about 15 people came and went, each asking the same questions.  The doctor walked in and asked us about sedation..  Had Hailey ever been sedated...yes.  What drug did they use?  What?  My look must have said it all.  I told her the type of sedation and that I wasn't sure what was used.  Didn't they have that on record?  Couldn't they find out from cardiology?  The doctor then continued by listing 3 or 4 drugs that it could possibly be, stating how critical it is sedating children with Ds (then why on earth are you relying on my memory?!)  At that point, I am getting annoyed with the ER doctor.  She then decided to look in Hailey's mouth.  The doctor looked up and said, "We aren't doing anything to this.  The perimeter is still in tact.  Her teeth did go all the way through at one point, but not enough."   That is when the color on my husband's face and I got sick to my stomach.  Then why are we here?  She continued with all the reasons why they weren't going to stitch her tongue and then off the cuff said, "We can have dental look at it, but they are going to say the same thing."  I explained that dental is who requested we come in for stitches and she just shook her head like it was wrong or we were told something incorrect.  My husband voiced his concerns for the inconsistencies and for Hailey's mouth.  He was getting upset so I just said, "Yes, please, we want dental to look".  More waiting.........

The resident from dental came in.  You know sometimes how you can be annoyed by a person you don't know for no reason at all?  I was annoyed with the resident when she walked reason...she hadn't even said anything, but I didn't want to deal with her but at midnight...that is all I get.  She agreed with the other doctor.  No stitches.  I'm in tears at this point because we have been dealing with this for 6 hours and they are doing nothing.  Why have we been waiting here, why did we get sent downtown for nothing, why is no one on the same page?  The ER doctor came back and said they were releasing Hailey.  We would get a prescription for a mouth rinse...use it 3 times daily.  We should follow up with the dental clinic in a week.  Hailey had cried off and on all evening so I asked the doctor if we could have something for Hailey's pain so she could at least sleep.  She looked at me perplexed, "You didn't give her tylenol?"  I almost came out of my chair...NO, I didn't.  I told you that, every nurse, both doctors and everyone at the urgent care!!!!!!!!!!!!  "Oh, yes, she does probably need something".  That doctor could not walk out of my sight fast enough.

We got home around 2 a.m......8 hours after it all began...we were home.  Luckily Hailey fell asleep on the way home and we put her to bed.  I set an alarm every two hours that night to check on her.  Part of it worry....part of it guilt.  She was fine and slept through the night.  Then the rest of the journey began.  The joys of withholding food from my nonstop eater and become a human pillow for the next three days.

This is one week post accident.  It looks SO much better here than initially (I couldn't bring myself to take a pic earlier).

This is 4 weeks later.  There is still a line, but thank God that it is almost healed and doesn't seem to be affecting speech or eating!

Thankfully...her tongue looks much better.  You can still see a faint line, but thank God it healed okay and it only slowed her down for a few days.  Mom still feels guilty every time she sees it!