Friday, September 28, 2012

Jacob @ 23 Months

So Much has happened in the last several months.  It's hard to believe that it's already been 6 months since his 1 year anniversary for his heart surgery.  But what an exciting 6 months it has been.

Although life has not been without its ups and downs over the last several months, I'm finally beginning to get a grasp of what my new "normal" life is going to be.  It's a life filled with therapy visits, doctors appointments, sickness - big and small, giggles, celebrations of the little things in life, and absolute bliss as I enjoy watching my little boy learn and grow.  I am often amazed at how little his Down syndrome affects his personality, and how he truly is just a little boy - albeit a LITTLE little boy. 

In recent months, we've had two visits to the hospital emergency room.  The first, in June, was because he woke up rasping and wheezing for breath.  I called the Dr. and, in light of his medical history, they sent us directly to the Sacred Heart Medical Center's emergency room.  NOT the Valley Hospital emergency room, which was 1 mile away.  Nope.  We got Sacred Heart - a specialty hospital that was a 30 minute drive away.  Luckily, we got there and they quickly discovered that it was some phloem in his throat.  Nothing to worry about.  Go home.   Woohoo!!!!

Then, the week before Labor Day, Nathan was sick with stomach aches and lots of time in the bathroom.  Inevitably, Jacob got it.  However, it didn't just stop with stomach aches and diarrhea.  Soon the stool turned reddish brown (which resulted in a doctor's visit verifying there was, indeed, blood in his stool).  Then, by the next day, it was all mucous and blood - no stool.  THAT was another emergency room visit, which resulted in an ambulance visit, to Deaconess Hospital just down the street from Sacred Heart.  Originally they seemed to think that he had Inception, which is where the large and small intestines telescope into one another.  It's something that can be life threatening.  However, after 3 days in the hospital, a few visits from the specialists, and lots of cultures, it was determined that Jacob just (relatively speaking, of course!) had Salmonella. 

So, we were sent home with the instructions to keep him at home and away from people until he no longer had diarrhea.  Sadly, Courtney got it shortly after, and that set off an entire month of quarantine of the little ones from the rest of the world. 

Now, all is right medically, and Jacob is finally back into his therapy sessions and Courtney is back to loving her "Courtney Days" every time he goes to therapy.

We recently had his 6-month assessment with all of the therapists and it's not looking good.  Of course all the time he has spent sick and out of therapies has not helped much.  Rather than being 3 months behind developmentally, he tested as being 9-12 months behind.  So each of the therapists gave me a list of new goals for Jacob for the next 6 months, I immediately went out and bought a bunch of items to help him work on his goals at home, and by the end of the night, he'd already achieved four of his goals. 

I began to think that I was BRILLIANT!!!!  Look at all the progress I'd done with him in just one night.  Then I realized.  Um, nope.  The boy was just to stubborn to perform on command for the ladies.  He could do it all along.  He just didn't WANT to when they asked him to.  Doh!!!

Beyond life as a boy with disabilities, I've had such a pleasure enjoying Jacob as just A BOY.  He may be almost 2, but he still looks like he's only 1 because he's so small!  So I'm often underestimating him.  Not a day goes by when I'm amazed at how quickly he can run (and I mean RUN) from disaster area to disaster area, tearing things off the shelves, emptying the entire Tupperware drawer all over the kitchen and living room, climbing the couches to get to things that I thought were out of reach, grabbing the toilet paper and TP'ing the house 3 times over, finding where I'd 'hidden' my phone and dialing grandpa at 7 a.m. while he's still asleep, and so on and so forth. 

Occasionally I get tired of running after him and cleaning up his messes and just sit and watch the chaos unfold, or play games, or just cuddle with him and Courtney.  I'm sure KC comes home and wonders what the heck I've been doing all day to have the house end up in such a mess.  But having had so many close calls with Jacob has made me realize the importance of the little things.

Having lived the first three months of his life without a smile on his face, has made me revel in his giggles when he's tickled by his daddy.  Working so hard to get him walking at 14 months, helps me to marvel at his speed as he's running full speed away from me in an attempt to keep me from grabbing my phone back from him.  All those months of feeding tubes remind me that his constant choice to fling ALL his food onto the ground and then eat it off the ground instead of his plate is small compared to the achievement that comes with being able to EAT at all! 

I love to watch the devious gleam in his eye when he tries to play 'keep away' from me with his favorite ball.  I can't help but crack a tiny smile when he flings himself onto the floor in a temper tantrum, trying to express himself when he still cannot talk and has so few signs to use (but that's only because he's too stubborn to sign!).  He's such an expressive little boy who can communicate everything he wants to say with his facial expressions, pointing, and other nuances of communication.

Even at such a young age, I KNOW life with Jacob will never be dull.  It will never be mundane.  And it will never be a waste of time. 

Life with Jacob is pure, unadulterated joy!

Tuesday, July 31, 2012

Our 1 - Year Anniversary!!!

NOTE:  FINALLY found myself back on my blog and saw that I'd never finished and/or posted my latest entry.  It's from MARCH!  Ouch....I must do better.  There will be another one with much more upbeat news shortly.

On Friday, I called our heart doctor and scheduled an appointment for his 1-year echo cardiogram. That one single phone call set off an entire weekend filled with retrospect and reminiscing over what our lives have become in the last year.

With Jacob now 16 months-old, and 13 months after his heart surgery, time has flown and our little Jacob has grown by leaps and bounds!

It's hard to believe that just one year ago we were, in essence, watching our baby slowly die before our eyes, and what a tremendous feat it was just to get him to reach 10 lbs in weight.  The physical therapist wouldn't even touch him because he looked so sickly, and I just looked at him in awe at his calm, patient demeanor as he endured his own personal trials at such a young and tender age.
(Jacob immediately after heart surgery)

As we look at photos, it is easy to discern which photos were pre-surgery and post-surgery by the sadness and lethargy in his face.

(weigh in just before surgery)

But as soon as he had his heart repaired a light literally switched on.  He was taken off ALL of his medications before he left home.  He was taken off his feeding tube within a couple of days of his surgery.  No longer did he just lay limp and lifeless watching the world go on around him.  He began to engage, smile, move, and LIVE. 

At his 1-year review with the cardiologist, we were told that not only does his heart sound nearly perfect, but they won't even do much more than listen to it with a stethoscope next year.  Our little boy has gone from missing the center of his heart, to a complete recovery physically.

Now he runs around after his sister, giggling as she runs screaming from him terrified of his assault on her personal space.  He walks, runs, climbs, crawls, squats in a catcher's stance, and spends every waking minute making up for lost time, exploring the world around him and all that it holds for our sweet little boy.

For us, the future is bright, and our hopes for Jacob are high.  Rather than standing at idle, we are moving full speed ahead trying to keep up with our dynamic, happy, lively little boy.  Wish us luck!

Saturday, January 7, 2012

Happy New Year! Onward and Upward!

If you know me, you also know it's no big surprise that you didn't get a Christmas letter this year (sorry!).  So, in lieu of Christmas cards, I thought my blog would be a great way to give all our friends and loved ones a quick break down of 2011. 

This year KC has been our rock!  Normally I just call him a tree trunk, but this year he has been promoted to "rock" ;)  In February, he broke his leg, tore all his tendons, and the mesh of tendons that keep the tibia and fibia together.  It was a LONG recovery process, but he's finally back to work and has been working long long long hours to make up for lost time. He's now the Mormon Doctrine Teacher, which keeps him on his toes, but I think he's up for the challenge :)  What little spare time he has is spent hanging out with the kiddos and supporting us in all of our massive number of activities going on around here.

As mother, I seem to be the glue that holds the family together.  I'm busy running the kids to and from school, numerous therapies and doctors appointments, transporting Elisha to all of her athletic stuff, doing all the domestic stuff, helping my sister to run her business, helping my parents with their business, and a bazillion other projects that seem to pop-up when you have 6 active people at home. My goal for 2012 is to go to bed before 2 a.m. each night.  I had a moment of insanity towards the end of the year and told our bishop that I thought Jacob was healthy enough for me to take on a job at church.  Luckily they saw through my insanity and now I'm teaching Sunbeams (3-year-olds) with Jacob in tow terrorizing those poor little kids every step of the way. Church has never been so exciting.  Luckily I bring snacks :)

Elisha is in "Beast" mode.  This year she became a Sophomore, turned 16, started driving, started her 2nd year in Varsity Volleyball and broke her foot in the 3rd game.  But of course, being Elisha, she didn't let that stop her.  As her team was practicing each day for 2 hours, she was either in the weight room lifting or in a corner perfecting some of her skills preparing for the day she could play again.  She missed the season but gained massive amounts of strength and skill as well.  She's now playing club volleyball and the track coaches are salivating over her.  Last summer she qualified for Nationals in the Junior Olympics in discus, but we weren't able to go due to time (we had a week's notice) and finances (babies with holes in their heart are expensive!). This year she plans on going and competing.  And, based on the numbers put up from last year, she will be an earnest contender to win Nationals this year.  Needless to say, some of the local colleges (WSU, ISU, and EWU) have already begun to show interest.  So these next couple of years should be interesting with her.

Nathan turned 12 this year and immediately became a pre-teen.  He now passes the sacrament at church and looks very dapper in his first real suit.  He also looks like the spitting image of his FATHER!!  He took a year off of sports to nurse his foot after surgery to lengthen his Achilles tendon and re-construct the arch in his foot.  So, to fill the time he took up reading which he has devoured!!  He goes through about 3-4 books (big ones - 500 - 700 pages each!) per week, and we just can't keep him stocked with books!  He's already as tall as his mother and stands almost a full head above everyone in his grade.  He's hoping to be able to play on the Church Basketball team this winter, and test his skills at basketball and football next year.  I have a feeling the coaches will be very happy when they see HIM show up to practice!

Courtney is our little gladiator/roller-derby/princess. You will either see her twirling around in a pretty dress, buck naked, or in various stages of undress - and often all three of those several times over the course of an hour.  Like her older brother, she stands several inches taller than her 2-year-old counterparts.  She loves singing along to the radio, watching Beauty and the Beast, Megamind, or any number of movies, climbing things like chairs, tables, counters, shelving, etc.  and listening to her family gasp and scream as she teeters precariously over the edge.  She's definitely a daredevil and I have a feeling that 2012 will be no different.  She certainly keeps a day from being boring!  But with a smile like hers how can you not love  her?

As a whole, it looks like our family has successfully learned to navigate all of the crazy obstacles and potholes life could throw at us.  We're looking forward to 2012 and all of the adventures it will bring with it.

We love you all and have appreciated all of the support you have given us in thought, prayer, service, notes, and so much more!  We have truly been blessed with an amazing group of friends, family, co-workers, and support system.  We would never have been able to do it without all of you. 

We hope that last year was a good one for each of you and that this year brings you much peace and joy. 

Very sincerely,

The Allreds