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!

1 comment:

Jen Grantham said...

He is so absolutely precious. And Susan, I have to say, your attitude and strength while facing challenges is so positive. Thank you for sharing your journey.