Birthdays, Blindsides, and Goodbye Kisses

We couldn't believe how quickly September had come and gone.  We were in full-scale planning for all things Fall & Winter.  October is a jam packed Birthday month.  Josiah was about to turn 4.  My birthday is at the end of the month.  We had a birthday celebration planned.  Our annual trip to the pumpkin patch was approaching.  We decided, this year, to bypass the mall trick-or-treating and take the boys "real" trick-or-treating - we were going with Josiah's best friend & her family!  Things familiar and new - we couldn't wait.

The boys had their flu shots.  Carl had a few MD appointments.  By Columbus Day weekend, we all had colds.  New England living makes this a common occurrence - cold one day, hot the next.  This wasn't unusual, nor did it concern us.

On Sunday, October 11th, family gathered to celebrate the 4 October birthdays.  It was a beautiful day.  Carl spent a lot of time outside with the boys.  We enjoyed good food, exchanged gifts, had cake, and celebrated a day of making memories.  The boys were happy.  I was happy.  Carl was happy.

On Monday, Josiah turned 4.   Carl had an MD appt.  I took the boys to a dentist appointment.  After, we met up with Carl at the YMCA.  We had registered the big boys for their first-ever mud run!  We spent a beautiful afternoon together.  It was a gorgeous day.  The boys had a blast and each won a medal.  Carl got a call, from his doctor, in the afternoon.  Carl had pneumonia.

Carl had gone through bouts of pneumonia countless times in his life.  This was not new to him.  It was not concerning.  A prescription was called in and we headed home.  The boys had school on Tuesday.

Tuesday & Wednesday were normal school days.  They were routine, at home, for Carl & I.  Thursday morning, we put the kids on their buses, for school.  Carl waved goodbye as the buses drove away - just as he does every morning.

Carl didn't seem to be getting better.  If anything, he seemed worse.  After some pleading, and a call to the MD, Carl agreed to let me drive him to the e.r.  We were sure he simply needed a more powerful antibiotic.  We weren't concerned.  Josiah and I brought Carl to the e.r. and said we'd see him later.

Carl was admitted to the hospital, for pneumonia.  He was being pumped full of antibiotics.  Friday, the boys and I went about our normal routine.  We talked to Daddy on the phone, Friday night.

By Saturday morning, I was concerned about Josiah's cough.  So, I bypassed the pediatrician and headed straight to the Children's Hospital.  I missed Carl & wished he were with us.  I thought about the last 10 years of Carl's health issues - chronic ulcers, several near death experiences, and several major surgeries.  He came through all of it.  He was a fighter.  This was just pneumonia.  This was nothing, comparatively speaking.

At 11am, we were still in the e.r.  Josiah had been seen but we were waiting for scripts, etc.  Josiah had bronchitis and an ear infection.  I realized that I had missed a call from the local hospital.  The message - Carl was in critical condition.  I called & spoke with the ICU MD.  Carl had strep pneumonia which had seeped into his blood stream; he was in septic shock.  I looked at the 3 boys through the window of that little room.  I couldn't believe what I was hearing.

We were able to leave a short time later.  Carl's brother was cutting a trip short; he was headed home to be with Carl. 

Carl's condition continued to spiral.  Strep pneumonia.  Septic shock.  Kidney failure.  Catastrophic medical phenomena continued.  I made two trips to the hospital to see him.  I kissed him, held his hand, thanked him for being my husband, thanked him for being an awesome father to our children.  I begged him to fight & told him how much we loved him.  His brother spent hours at his bedside.

On Monday, October 19th, at 8:13am - Carl took his last breath.

How had we gotten here?  How could I be saying goodbye to my Love?  How could this be happening?  One week before, we cheered our boys on during their mud run.  Now I prepared for the bus to arrive home.  Now I had to tell the boys that Daddy was gone.

A week before, it was picture perfect.  It was perfect until it was no longer.....

What's That Sound?

Last weekend was spectacular.  On Saturday, we attended our town's annual celebration.  On Sunday, we went to a nearby historic home that hosts an annual family fun day.  Both days were beautiful.  The kids got out some excess energy; They breathed in lots of fresh air.

On Monday, we had a bit of a break.  The EI (early intervention) coordinator was away on vacation, so Josiah had a Monday off.  On Tuesday, his speech therapist came.  Josiah spent the hour fussing and trying to avoid her.  There's more of a story but I'll spare you the agony.  Suffice to say, we're not impressed.  On Wednesday, the PT (physical therapist) worked with Josiah.  He sometimes complains when he has to work, but this day he cried incessantly.

Thursday, we made an appointment with the the pediatrician.  The 3 year old had been coughing (mildly) for two days.  I suspected Josiah might have an ear infection.  In the end, the 3 year old was diagnosed with a mild case of croup.  Josiah's ears were pink but not infected.  Home we journeyed.

If you haven't experienced croup, it's interesting.  When our little one first got croup (about a year ago), he emerged from his bedroom with the 'infamous' cough.  C sat straight up and said, "What the hell is that?"  It is that striking.  The sound of a croup cough is often compared to that of a barking seal.  It is caused by swelling of the larynx (voice box) and trachea (windpipe).  It is caused, generally, by a virus.  It is most common in children three and under.

Our week proceeded.  On Friday, the 6 year old had a friend over.  We went to a playground.  It was a good day.  Josiah went to bed around 8pm.  Around 9pm, we were startled by Josiah's cries.  Running into his room, I found him - eyes wide open - gasping for air.  It is a scary thing.  Within minutes, we had everyone packed into the van and were headed to the nearest e.r.

At the hospital, Josiah received his first steroid shot (which helped immensely).  He was diagnosed with a severe case of croup, complete with stridor cough.  For those of you that don't know, stridor is a noisy, harsh breathing that occurs when a child inhales.  It is frightening sound.  By 1am, we were heading home with all our babies.  We were grateful.

Saturday morning, our six year old hurried out of his bedroom.  He had to pee.  Normally, I wouldn't have been startled.  Perhaps it was the cough that accompanied his expeditious walk.  It was the same cough that once made C sit up and ask, "What the hell is that?"  Yes, I was sure.  He, too, had the croup.  

We were able to snag an 11:15 appointment with the pediatrician.  In the end, the 6 year old had croup and conjunctivitis.  The 3 year old's croup was the same but he was developing an ear infection.  Josiah was 'croupy' but also had a full blown ear infection.  After a couple of stops, we arrived home with one more humidifier, steroids for two children, antibiotics for two children, nebulizer meds for one child, and eye drops for another.  

That was Saturday.  Sunday, Monday, and today have been relatively peaceful.  The steroids are done.  We just have antibiotics and eye drops to administer.  The kids are quickly getting back to normal.  What's that sound?  Now, it's the sound of (basically) healthy kids.

Be well, my friends :)

31 for 21 Blog Challenge: DAY TWELVE: 1st Birthday

It's official!  Josiah is ONE!!!!!

It's hard to believe what a difference a year can make.

Last year, at this time, I think I was running on pure adrenaline (and strength from above).  My oldest brother had just died (in September) and we had put him to rest.  Carl had had a medical emergency and was hospitalized for about two weeks.  One week later, Josiah was born.

The following several months were typical of a family embracing a new baby.  We were no different, just running on exhaustion having survived the chaos of the previous weeks.

In December, the older boys got colds.  Josiah got one - it proved to be the best thing that could have happened.  The 'cold' developed into bronchiolitis (and possible RSV).  He was hospitalized at Children's for one night.  We (he and I) were released New Years Eve day.  Two weeks later, during a follow up echo cardiogram, we would learn that Josiah had numerous holes in his heart resulting in pulmonary hypertension...not good news!  Two weeks later, we were at Children's where Josiah would undergo open heart surgery.

Josiah was released from Children's 4 days after surgery.  Six weeks later, he was fully recovered.  The weight continued to be a battle for several more months.  Now, he is a thriving little boy.

To say we treasure every moment, is a gross understatement.  To say we are thankful doesn't even come close to the gratitude we feel.  We have an amazing family.  We have an amazing life.  We have been blessed a hundred fold.  We know this much is true!

"For today and its blessings, I owe the world an attitude of gratitude"

- author unknown

31 for 21 Blog Challenge: DAY SIX: What's in a Nickname?

This is my blog entry from February 14, 2012.  I thought it was worth the repost:

What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found:

http://www.thefreedictionary.com/doodle defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf.

http://en.wikipedia.org/wiki/Doodle defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton."

http://www.merriam-webster.com/dictionary/doodle defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

"Being ignorant is not so much a shame, as being unwilling to learn."

- Benjamin Franklin

What's in a Nickname?

During our recent hospital stay, I was having a conversation with a nurse on the medical unit where Josiah was being treated.  She was a wonderful nurse & Josiah liked her very much, as did I.  We were chuckling over Josiah's hair (it's wispy and tends to stick straight up - much like a mohawk).  She was commenting that a lot of children with Down Syndrome seem to sport a similar hairdo.  During this conversation, she admitted that the staff tends to call these kids "Doodles."  At face value, I thought 'that's kind of cute.'  Perhaps I should have left it at that.

When I returned home, I thought of that nickname and decided to look up the word "doodle."  I know it means to scribble, etc.  However, I wanted to research the word further.  Here's what I found:

http://www.thefreedictionary.com/doodle defines the noun as being "A figure, design, or scribble drawn or written absent-mindedly.  The informal noun means "fool or simpleton" from the German dudeltopf.

http://en.wikipedia.org/wiki/Doodle defines the etymology as this: "The word doodle first appeared in the early 17th century to mean a fool or simpleton."

http://www.merriam-webster.com/dictionary/doodle defines the noun as "a minor work."

Perhaps, their nickname for DS kids is innocent.  This nurse readily admitted she knew not why they called the kids 'doodles.'  Perhaps the nickname has been used for decades and the newer/younger nurses have never made the effort to determine it's meaning or origin.

I'm not usually a person that focuses on "political correctness" and the like.  I certainly don't care what nicknames people use.

However, I think this is much different.  Here we have professionals using a nickname to define our children.  If the professionals use such a nickname, doesn't it merely fuel the fires of the ignorant?  90% of all DS pregnancies (that receive an early pre-natal diagnosis) result in abortion.  I firmly believe in a woman's right to choose.  However, if some of these abortions occur due to ignorance and misperception, isn't it possible that the professionals (whether they mean to or not) are contributing to societies fear and misperception of Down Syndrome?  I think it does.

Before the general public can ever change it's negative attitude about Down Syndrome, DS kids, and the parents that have chosen to give them life, I believe that nicknames like "Doodles" need to stop being used.

It's just my thought....

---

Josiah meets the family

Before we had left the hospital, Josiah had met his brothers (Jesse & James), his maternal grandparents (Mimi & Bah), and his aunts (Angel, Dee, and Chris).

Over the next few days, Josiah was introduced to his paternal grandmother (Nana), his uncle Tom & Auntie Anne.

A week later, he met his Uncle Jeff & cousin Cathy.

Josiah has been accepted by everyone!  Any previous reservations were gone :)

Josiah is part of our family & he is loved <3

My sister-in-law, Chris, who is "quite smitten with him" stated this:  "I think he (Josiah) is going to be the spice of our family."

We think Josiah is just what/who our family needs.

The final month & complete mayhem

As September rolled around, we knew we had about 6 weeks to go.  We had no idea what the following weeks would bring.

Sept 3, 2011:  My oldest brother, Scott, died unexpectedly.
Sept 8, 2011:  Wake/visting hours
Sept 9, 2011:  Burial.

Sept 18, 2011:  Baby shower for Josiah - the one great day in September.

Sept. 19, 2011:  Carl has medical crisis & ends up in local hospital.
Sept 22, 2011:  Carl returns home
Sept 23, 2011:  Carl has medical crisis & ends up in Boston hospital.
Sept 25, 2011:  Carl undergoes major surgery.
Oct 4, 2011:  Carl is discharged home :)