Tuesday's Huge Stride

February vacation began on Saturday, three days post-moving-home (from Blizzard displacement).  I taught on Saturday, visited with my Aunt, and accomplished things around the house.  Sunday and Monday (the holiday) - I did nothing.  I stayed in my pajamas, fed the kids, bathed the boys, and otherwise sat on my behind....a much needed break.

This morning started as usual.  The three year old whom we now refer to as the human alarm clock arose at 6:06am.  We call him the human alarm clock because he awakes, without fail, between 6:00-6:30 (usually between 6:05 and 6:20).  We managed to get him ready for preschool and C left with him, running, at 7:48.  At 7:52, around the corner, they determined that they must have missed the bus.  C drove him to school, arriving there at 8:10.  As it turns out, the bus isn't running this week due to vacation week. 

Meanwhile at home, C (occupational therapist) arrived at 8:15 for her scheduled appointment with Josiah.  He was up, changed, dressed, nursed, and ready to play.  C came with a friend today.  It was twice the fun, twice the attention.  Josiah loved it.  While D (physical therapist) continues to work with Josiah on gross motor, C focuses more of her attention on fine motor (grasping small object, gripping, eating, etc).  Josiah is making good progress in this area.  He laughed, flirted, and worked hard for C today.  He did very well.

By 9:30, the session was over.  Josiah was exhausted.  He ate his cereal (baby oatmeal & fruit), the six yr old got ready, and we were out the door.  Our adventure was one of many small accomplishments.  We paid bills, dropped paperwork off, picked up a few items for Josiah, kidnapped my Mom (who returned home this past weekend), visited my aunt, returned my Mom, and made our way to preschool.  We got there at 3:45.  We had a busy day but felt good about all we had done. 

We arrived home at 4:15.  We were home for the night.  To satisfy a six year old's desire, we ordered pizza for dinner (meatball sub for the 3 yr old 'cause someone doesn't like pizza lol).  We had a fun night at home.  Everyone was in a good mood.  Things were fairly mellow.  We even watched a movie together.  Then it was time for the 3 yr old to go to bed.  It was about 7:30pm.

As he brushed his teeth in the bathroom, with C supervising, I sat in the living room with the six yr old, and Josiah.  Josiah was on the floor, his oldest brother a short distance away.  As we've seen him do before, Josiah got up on all fours and began rocking.  Something was different.  There was a determination in his eyes that was not to be missed.  I grabbed my phone and frantically opened up the video app.  This is what I captured:

Even as I type this, I am in awe of an amazing little boy.  He's sixteen months old and crawled for the first time tonight.  I couldn't be any prouder.  It's not about age.  It's about a little boy who demonstrates more strength, determination, resiliency, and spirit than anyone I have ever met.  Josiah is my hero and my life has been blessed, tenfold, because he is here <3

The most important moments lie neither at the beginning nor the end,

but rather in the journey getting from one to another.

Staycation at the Grandparent's

We spent a total of three nights, four days, at my parents house.  Monday, we went for a drive.  24 hours after a fresh snowfall usually makes for beautiful driving.  Of course, rain greeted us.  Nonetheless, we drove around, went grocery shopping, and returned to my parents house.  Tuesday, C drove home.  Power had been restored.  Cable and water, however, were still on hiatus.  So, we stayed another night at the grandparents home.  No one minded.  Wednesday, C returned home.  Cable was repaired, water restored.  Meanwhile, back at the g'parents, boys were being bathed, laundry was being done.  For some reason it took the better part of the day to pack for our return home.  After stopping to complete a few quick errands, we finally arrived home around 6pm.  The oldest had missed one day of Kindergarten.  The three year old had missed 5 days of preschool (2 from being sick last week, 3 due to being displaced).  Miraculously, we returned a healthy family.  This Mama avoided the stomach bug; everyone had come through on the other side. 

Upon our return, we hurriedly completed bedtime routine.  Nothing felt routine but we made a valiant effort.  The older boys went to bed around 8pm (about an hour behind schedule).  Josiah followed in his own time.  It felt good to be home.  I was grateful for the accommodations during our time away but was definitely pleased to be home.

Thursday morning came too quickly.  The Kindergartner's project had not been completed.  Therefore, 6am found he and I sitting on the living room floor.  The rug scattered by materials that spilled from the craft box.  A cylindrical oatmeal container would make a perfect mailbox.  By 6:45am, it was complete with red construction paper and spiderman stickers.  By 7:15am, the Valentine's Day cards were made out, and signed, by the six year old himself.  We wrote out the cards for the three year old.  Somehow, during the last 45 minutes, I managed to wake Josiah and feed him (in part).  8:00am came quickly and hurried the two older boys out the door with C. 

As the older boys rushed out, D rushed in to work with Josiah.  It was Thursday...time for PT.  Josiah had an off morning.  He was pleasant, smiling at times.  He did not want to work though.  When D could get him to work without him realizing it, he was fine.  The minute he realized he had been tricked, he fussed.  Silly little boy.  He doesn't appreciate the hip helpers, at this point.  Of course, the more he complains about using them, the more he needs them.  If you don't know, hip helpers are much like spandex shorts but the legs are sewn together at the inseam.  The design prevents Josiah from performing "splits" when he goes into, and out of, the sitting position (a new trick that needs to be tempered). 
Well, the 75 minutes finally passed but not without his (somewhat) constant complaining.  Who can blame him???  I think we were all a bit off....it had been an unusual couple of days.

The were already talking about possible snow for the weekend.  My parents were coming home this weekend also.  We would wait and watch.....

Blizzard 2013

Josiah has survived his first blizzard.  Saturday, we woke to about 18 inches of snow.  Of course, he's too young for it to become a childhood memory, but we'll still have the pictures.  Saturday was also the last day of his tummy bug (he came down with that on Thursday, along with his 3 yr old brother).  Daddy and the 6 yr old brother woke up with it on Saturday.  So far, this Mama has escaped disease :)

It was no surprise that we lost power on Friday night (around 8pm).  The snow had really picked up pace and the winds were howlin'.  We slept by flashlight, four of us on the same floor.  We positioned the big boys in the playroom.  Josiah was given the solitude of his room.  Miraculously, everyone slept fairly well.  We were happy to have light on Saturday morning.  The day went along quietly.  Again, the six yr old and C were both on day 1 of a tummy bug.  I played with Josiah and the 3 yr old.  We watched the plows go by.  As night fell, we broke out the flashlights once again.  By 8pm, we were well on the way to dreamland - boredom induced, I believe.  It had dropped from the usual 70 degrees to about 58.

Sunday morning, we were up at about 7am.  It was 46 degrees.  Daddy was better but the 6 yr old was still sick.  We started packing.  By noon, we said good-bye to home.  The electric company is saying we will likely be without power until Thursday night.  We shut off the water main and drained the pipes.  We took some of the food/milk/etc.  We closed the door.  It was 44 degrees inside our house.

We were packed like sardines in the minivan, and we couldn't be happier.  Three kids, check.  Two adults, check.  Dirty laundry (from 4 sick individuals - ewww!) and everyday laundry, check.  Most important perishables, check.  Suitcases, snowsuits, hats, mittens, boots, 'baby' bath tub, a few toys, pepsi (for the Mama), and beer (for the Daddy), check!  Lol.  We were off!

We headed for my parents house; they live about 15 minutes away.  Given that the Governor had implemented a statewide driving ban for 20 hours "to get the roads cleared," it was amazing to see how NOT cleared the roads were.  Nonetheless, we made it and are THRILLED!  Warmth and cable!!!  We are a happy family.  Everyone slept well last night.  Everyone seems to be feeling well today :)  So, off we go.  We're going to drive around to get some good blizzard pics & stop at the grocery store.

Stay safe and warm, friends!

DS Clinic

Josiah had his second visit to the Down Syndrome Clinic.  We were up at 4am; we woke the boys at 5am.  We knew it was going to be a family trip; we had to leave too early for school to be an option.  We were only five minutes late leaving.  6:20am - we left the house.

It's amazing that traffic can be such a nightmare at that early hour of the morning.  Of course, when you take into account the rain, it stands to reason.  None-the-less, we arrived at our destination at 8:20, parked, and walked into the lobby at 8:40.  Official check in time is 8:30, so C and the big boys headed for breakfast.  Josiah and I headed up to the DS clinic.

By 9am, he was getting height/weight checked.  Height 29.5 inches.  Weight 21lbs 5oz. Yay!!!  The boys joined me upstairs after a short time.  They came bearing Mama's breakfast - so sweet.

Before long, we were called in to see PT (physical therapy).  A nice padded mat was on the floor.  On it, were several fun toys.  Josiah was pleased to have some floor time, especially after the long car ride in.  He cleverly showed off his ability to roll, sit, get into and out of sitting, side-sit, and the like.  Josiah was proud to demonstrate his ability to get onto all fours and rock back and forth.  He even scooted forward a little.  The PT told us what we have known for weeks - Josiah is just on the cusp of crawling.  It's going to happen any day now.

Next, we met with nutrition.  The meeting was brief.  Josiah's weight is no longer a concern.  His height to weight ratio is the 50th percentile....so he's simply perfect :)

Next stop - Dr. D, whom we adore.  Josiah was happy to smile for her.  Dr. D. was proud of how far he has come since June.  She is very pleased with his progress.

Final stop, this time, was OT (occupational therapy).  It was close to 12:30 and Josiah had reached the end of his tolerance.  He was in tears by the time we reached the last room.  I quickly pulled out a few jars of baby food.  He ate.  He nibbled on a few goodies, from the OT.  She wanted to watch him eat.  Finally, he nursed and fell asleep in my arms.  He was a shot little tot.  It was around 1pm.  He had reached the end of the road.  Best of all, everyone is pleased with his progress.

The day would have been longer, but a few hiccups made for a shorter day.  The dentist was at a conference, so we couldn't check in with them.  Josiah is being treated for an ear infection, so audiology was off the table.  We also need to schedule a cardiology follow up, as well as a first vision appt.  So, four appointments to go....all outpatient and closer to home.

By the time we stopped in the cafe for lunch and made our way home, it was about 4pm.  We were exhausted but very content.

This little miracle continues to amaze us everyday.  Our life is so very blessed.

An Important Anniversary

One year ago, today, was a very important day.  January 25, 2012.  Josiah's rebirth...the day his broken heart was fixed.

Last year, we had learned of the many holes that were wreaking havoc in Josiah's heart.  We learned about his pulmonary hypertension (caused by the holes).  Josiah had undergone several tests and open heart surgery was necessary.  We had received the call on Friday, Jan 20th...pre-op Tuesday, open heart surgery on Wednesday.  Tuesday's pre-op happened without incident.  Wednesday, January 25th, was a long day. 

It started at 1:30am - we woke Josiah for his pre-surgery bath.  As I undressed him, I knew that his chest would never look the same again.  I remember feeling "he will be scarred for life."  It's not a good feeling for a Mom to have.  I took this picture of my little man.  He weighed 8lbs 7oz.  He was a mere 3.5 months old.

It was the most anal bath, I had ever dealt with.  We had been sent home with a bath sponge, soap, and directions.  It was important that we followed instructions as it would decrease the chance of infection.  We followed directions to a tee. 

At 2:00am, I was nursing him - we had a 3:00am cut-off time.  I wanted to be sure he had one last feeding before we left for the hospital.  Josiah ate and napped.

At 5:00am, we left for Children's, arriving at 6:15.  We were checked in by 6:45 and taken to pre-op.  At 7:50, Nurse Tom would do something very special.  He allowed us our hugs/kisses, wrapped Josiah in his favorite blanket, gave him his favorite stuffed animal, then CARRIED our little angel to the operating room.

At noon, we were meeting with the surgeon.  Josiah had successfully undergone open-heart surgery.  He was a little miracle. 

Josiah was in CICU immediately following the surgery.  There were tubes, machines, and the like.  Here are the pics I took of him there:

 

It's difficult to convey 'what I felt' then.  By reading my own blog, the memories come right back.  I remember things that had since been forgotten...the details...the little moments.  The play-back of time.

Here is the much anticipated scar that I so feared.  I remember hoping that as he grew, others wouldn't make fun of him for this scar.

Suffice it to say, Josiah did amazingly well.  Here is a picture of him taken two days after surgery.  It was January 27th.  Most of the tubes had been removed.  He was out of the CICU.  Recovery was amazing!!!

On January 29th, I wrote the following in my blog:

"Josiah woke at 1am for a weight check and feeding.  He's weighing in at 3.14k (down from 3.15 the night before).  Then he slept until 7am.  We woke to confirmation of today's planned discharge.  Carl is coming at 3pm to take us home.

Josiah had several feedings this morning, as well as a bath.  His final labs came back perfect.  He is healthy.  He is strong. 

I've returned a borrowed movie.  I will return this borrowed computer soon.  Our bags are packed.  We are ready to go home.  Josiah is enjoying his last nap here.

I reflect on the last week and I am amazed at where we stand now.  I am amazed at Josiah's strength.  I am in awe of our little heart hero.  I am star-struck over his determination and bravery.  What has transpired is nothing more than a miracle (and a whole lot of skill).  They have given us back our son.  I am thankful for everything the doctors have done.  I am thankful for broken hearts made whole.  I am thankful for a wonderful family, support network, and friends.

All the while, I can't ignore what we were not faced with.  My heart breaks for the children who don't go home.  I shed tears for the car seats that leave empty.  I am saddened by the empty cribs unable to embrace the children they were assembled for.  For so many, it is not the happy ending we are living.  For those, my prayers are with you.

I will never forget how precious life is.  I shall never take for granted the miracles we have been blessed with. 

Climbing Up the Down Staircase is an incredible journey!  For that, we are so fortunate."

This is a picture I took last night January 24th, 2013.  It is the one year later pic :).  It's hard to tell he even had surgery.  It is amazing!

And, this is Josiah - one year later.  Happy Anniversary, my little heart hero :)

                          

Current age: 15months

Current weight: 20lbs 12oz

Current height: 30.5 inches

Cute factor: 10

 

...forever grateful for the miracles in my life...

Who Needs Synagis?

As Fall approached, our pediatrician's office worked steadfastly to get Josiah approved for Synagis shots this year.  Their attempts were shot down.  The MD appealed the decision.  The whole process took until well-into October.  Their effort, futile.  The insurance company said that Josiah doesn't need them; he's not at-risk.  Ok.....

As Christmas day came to an end, Josiah's cough became more pronounced.  The three year old had had a cough for almost a month.  They had both been diagnosed with an ear infection; both had resisted amoxycillin.  They were both on their second round of antibiotics - a Saturday morning visit to the pediatrician, three days before Christmas, had proven that the first round was unsuccessful.

Late Tuesday night, I ventured into the attic searching for the two humidifiers I knew were stored there.  I quickly found them and dragged them out of their hidden corners.  Downstairs, I determined that only one was working.  So, I had to choose - which kid gets the working one?  Well, I rationalized, the three year old is getting better, and can take zarbees cough medicine (pure honey).  So, Josiah won!  The humidifier was set up in hopes that his cough would settle down. 

During the next 48 hours, we listened to Josiah become more and more congested.  Friday morning, I was well aware that the Holiday weekend loomed in front of us.  We called the pediatrician and got a 2pm appointment.  We figured, let's have the two youngest checked.  As usual, we were there on time and ushered right into a room.  The MD came in and made an immediate remark that Josiah didn't sound well.

The three year old was checked first and given a big thumbs up.  His ear infection is on it's way out.  Then, it was Josiah's turn.  Lungs listened to - "they sound wet."  That's not good.  Ears checked - "that one looks awful!"  Ugh!  T-shirt pulled up - ribs retracting when breathing.  Uh-oh!  Did I mention that the Holiday weekend was looming?  "He probably has RSV."  "If it's not RSV, it's pneumonia."  End result - head to Children's.

The MD called ahead so they would be expecting us.  We hoped to drop the older boys off at their grandparents house - we were told not to waste the time.  Three boys packed into the car, quick stop at the gas station, and we hit the road for Children's Hospital.  Friday at 3pm, on a Holiday weekend, doesn't bode well for traveling (especially when there's a sense of urgency).  We made it to the e.r. around 4:15pm.  C dropped Josiah and I off, and headed home with the older boys.

E.R. visits always take a while.  I was fairly certain we'd be staying overnight.  It was only one year ago, on New Year's Eve weekend, we had made this same trip.  Josiah had a suspected case of RSV and we were sent from pedi to e.r.  Last year, Josiah was hospitalized.  I anticipated the same.

I immediately stated that I wanted Josiah tested for RSV (they don't usually formally test because it doesn't change the actual treatment).  The MD's were great and obliged.  At 9pm, the MD entered the room, "Did you hear?"  I replied, "Hear what?"  MD, "You nailed it from the beginning.  He has RSV."  I asked, "Did you document that?"  She smiled and simply said "Yes."

Luckily, they didn't feel that Josiah required hospitalization this time around.  Josiah was discharged; C came back for us and we headed home at about 10pm.

He had a fever late that night; it responded well to Tylenol.  His cough and congestion got worse; both now seem to be improving.  It's New Year's Eve and we're home.  We are thankful for the blessings in our life.

It upsets me that a faceless individual decided that our son isn't "at risk."  Our son doesn't need the Synagis shots (which protect at-risk kids from RSV).  I'm upset that our son has to go through the congestion, coughing, and fevers.  I'm upset that he's been housebound due to my fear of him getting worse.  I'm upset that he's sick.  It's because of a faceless person and someone's bottom-line (ie money).  So sad.  After all, who needs synagis???

Zero to Sixty Faster Than the Speed of Light

Tonight was certainly not one of my prouder moments.  It involved an accumulation of stuff followed by a three year old boy.

I'd like to know how a child who is knee-high to a a grasshopper, can invoke such mommy- dearest-type reactions (perhaps that's a slight exaggeration).

The middle boy (age 3) had his "well visit" two weeks ago.  All was perfect.  24 hours later, at my urging, C took him to the e.r.  Diagnosis: middle ear infection.  Treatment: Amoxicillin.  No problem.  Little one loves the bubblegum flavor so, for the next ten days, he gladly took his medicine.  Now, albeit, an occasional dose was missed (school, fell asleep, Mom/Dad forgot, etc) so, fast forward to day ten, while I was pouring his last dose he pipes up "Mom, my ear hurts."  Great!  Last dose consumed.  Pediatrician office the next day (yesterday).  Yup!  Ear infection still there.  Same ear.  "It's early in the season to see resistant strains," says the N.P.  Well, that's encouraging!

Off we went with a new script - new medication.  Let's try this again.  Not missing a dose was stressed.  To make it easier, the new medication is to be taken once daily.  Perfect!  Last night, 5pm, time to take medicine.  Little one takes one sip (after questioning why this medication doesn't look like the last one - it's white in color, not pink).  He took one sip and announced he hated it.  End result - me laying him over my lap & squirting it in his mouth with a syringe.  That's always a pleasant thing to have to do.

This afternoon, C calls pharmacy.  We pay to have the medication flavored with 'bubble gum' flavoring.  He brings it home.  I pour it.  Little one sees the same white color and questions it.  Trusting me, he takes one sip.  He promptly announces he hates it.  End result - me laying him over my lap & squirting it in his mouth with a syringe.  New twist - HE SPIT IT OUT.  So much for not missing a dose.  I was FIT TO BE TIED.  Mad?  Yes!  Exasperated?  Even more so!!!  I went from zero to sixty faster than the speed of light.  I yelled and shouted; I was bordering on 'over the edge.'  I had to walk outside to cool off.

I'm already dreading tomorrow's dose.