Wednesday, January 2, 2013

You've Come a Long Ways, Baby

Looking back over 2012, I have to say it's been a good year.  At the end of 2011, Aaron was weighing 20 pounds and being put on a diet.  Take that, "failure to thrive."  Today, he's tipping the scale at a respectable, healthy 30 pounds.  He's active and healthy and loves his life.  Here's a quick recap of our last year.


Aaron is outgrowing his car seat.  Not only is he too heavy, he's also getting too long!  He ends up with the comfiest seat in the car. 


We try out a new style of hearing aid.  This one takes his hearing to almost normal levels.  While it may not sound that incredible, you need to understand that without the hearing aid, he is almost completely deaf.  With traditional aids, it only increases his hearing slightly.  Aaron is introduced to the world of sound in a new and wonderful way!


March is Trisomy Awareness Month.  I spent time reflecting on how much our lives have been improved by our journey.  Aaron has taught us in so many ways what is and what isn't important.  Kind of that "Don't sweat the small stuff, and it's almost all small!" concept. 

We also had a fun visit when cousins came to see us.


April was a tough month for Aaron.  He caught a cold, and not content with just that, our little overachiever had to play with a pneumothorax as well.  We spent two weeks in the PICU while he fought it and the complicating factor of increased pulmonary hypertension.  We were once again reminded of how precarious his life is when the doctor said, "I don't know what else there is that we can do." 


While Aaron was discharged the end of April, it took the full month of May for him to return to his previous baseline in health.  We just kinda hunkered down and dug in for the long haul. 


Birthday Time!  Aaron turned two on June 13th.  This time around he was awake for most of his party.  It was lots of fun and he enjoyed tasting his cake.  He was also featured in the Deseret News and on KSL.  The reporter told me the next day that it was their top hit and showed no sign of slowing down!  Mostly, we're just grateful to have been blessed to have this time with him.


The hot, dry summer brought an excitement all of it's own.  On July 2nd, a spark caused a forest fire in our little town that quickly grew.  We quickly moved things into the cars and put everything Aaron was using in a cooler in his room.  The we sat and watched as the mountain near us exploded in flames.  I explained to Aaron that it was important that he be very good, because all his friends were busy helping other people and wouldn't be able to come.  We gave albuterol around the clock for the next few days and he had a party!  (Albuterol increases his heart rate and makes it harder to settle down to sleep.)  What a blessing when the weather turned cooler and rain came in later in the week.  All calmed down and Aaron finally slept. 


Aaron went on a road trip!  We went down to Gilbert, Arizona for a visit with my parents.  Lots of fun and swimming in the pool.  He tolerated the trip very well and everyone had a good time. 


We started "sprinting" off the vent.  In April, just before he got sick, his pulmonologist said that we could start trying to breathe without the vent a little bit.  But then he got sick and we had our trip coming and so on.  Just didn't want to rock the boat there.  When things settled down a little with the kids back in school, we started.  And he did great!  Yeah, he gets tired after a while, but he hasn't been using those muscles to breathe for almost two years.  Plus, the vent works exactly the opposite of our lungs.  When we relax, we breathe in, then exhaling is an active process.  With a ventilator, it pushes the air in and then releases and the patient breathes out.  So very different action than what he was used to.  But he made significant strides to where he was breathing on his own for a few hours a couple times a day.  YEA!

He also started going to story time at the library.  We were only able to go for September and a little bit in October but he really seemed to have fun!


Aaron got to go trick-or-treating!  This was a first for him.  His first Halloween, he was too tiny, and struggling, although we didn't know why yet.  Halloween 2011, he was in the PICU.  Yeah, no trick-or-treating there, although the staff was wonderful and took a picture of him in a costume that was given to us.  This year it was really warm out and we had a great time.  He wore the clown costume that every one of the other kids have worn. 


He got a new bed in November.  It's fabulous, and just what he needed.  Plus, it's big enough that Mom can crawl in and take a nap with him, too.  I've missed taking naps with my baby.  It's something I always did with my other toddlers, and even if he's not toddling, I need it. 


It's Christmas Time again!  Aaron starts using a "speaking valve."  Not only does this let him practice using his vocal cords, but it also helps to strengthen his lungs.  He also goes in for his first heart catheterization.  The results are mixed, but we're trying to work through them.  I just keep reminding myself that nothing really has changed, we just have more information about it.  And remembering that none of us are guarenteed any particular length of time on this earth.  We just are blessed to have it brought to the forefront of our thoughts that his may be short, which gives us the opportunity to make the most of the time we do have, not only with him, but with others in our lives, too.


Next week, we start the round of specialists again.  On Monday, we visit with the NET about his ears and cardiology about his heart cath.  A few days after that, he'll go up to Shriners to be fit for his brace for scoliosis.   Later this month, he'll see his endocrinologist and probably his urologist, along with having his screening ultrasounds for cancer.  And so it goes on, and so do we.  And I wouldn't have it any other way.

2012 was an easier year than 2011, which was easier than 2010.  He can now sit up with support and play with his toys.  He has definite favorite activities, which include not sleeping if he catches Mom climbing into his bed!  We only called paramedics once in 2012, instead of the six times in 2011.  He was also hospitalized three times for 16 days instead of 11 times for 49 days.  He sees his therapists more often than his doctors, and he's looking forward to starting school when he turns three. 

Mostly, (I think) I've learned to roll with the punches a little bit better.  I've learned to "let go and let God" more often.  I still struggle.  Sometimes it's still hard.  But that's okay.  It's through stress and struggle that our muscles grow stronger, even our spiritual ones.  Here's to 2013. 

The gem cannot be polished without friction 
nor man without trials.  


  1. Wonderful journal of his life for 2012! Hoping his 2013 is even more encouraging. He is such a JOY in your life, I can tell. Prayers for many blessings and continued improvements in his health.

  2. I admire your strength and faith, what an example you are! Little Aaron is a treasure, and he is what he is a lot because of you and your determination, diligence, faith and love. He is thriving and happy, and I don't see how with 8 other children and a husband to care for you somehow manage to take everything that comes-and learn to love it all. Bless you and your family.