Friday, October 25, 2013

A Year of Blessings

On Saturday, our little man turned one.  What an incredible journey this past year has been.  From the all consuming fear we felt with his arrival, to the triumphant joy we felt as he overcame obstacle after obstacle...the ups and downs have been extreme.  Yet the downs have been overshadowed by the miracle of the ups.  Many years ago, when I was having a bad day, my grandmother asked me where I was exactly one year ago to that moment.  I couldn't name it.  Her point was that these bad times will at some point be insignificant or just a memory.  A year ago today Gavin coded in the ICU.  I can remember every sound, smell and feeling I had for those terrifying hours as I prayed with every cell in my being that God would spare my child and bring him back to me.  Today, one year later, we are in an amazing place.  Gavin has changed so many lives in this year and has showed us what a strong, resilient, happy and loving little boy he is.  He laughs with his whole body.  He babbles with so much energy and the excitement he exudes when he accomplishes something new in physical therapy would touch anyone's soul.  Four surgeries, two cath labs, weeks and months in the hospital...and he is the happiest child I have ever known.

Gavin is doing GREAT!  He will be going into his fifth surgery in a couple of weeks to reverse his ostomy.  Our baby will finally be whole again.  About a month after his revision, his intestines came back out, so for the better part of eight months he has lived with his intestines outside of his body.  And while it has become a normal part of life for us, it is a much anticipated change to have that wound become a healed scar.  So we are making the rounds to prepare him for surgery.

He got a check in the box from cardiology.  His last angioplasty seems to be holding this time meaning we don't need any other interventions for his heart in the near future.  He has his vaccines up to date and is weighing in at a nice 18 lbs 6 oz.  So close to that ideal 20 lb mark that we thought he wouldn't reach until 2 years old.  Next week we will meet with an occupational therapist to get a baseline for feeding therapy before his surgery, and Gavin will get a swallow study while in the hospital to give us a more comprehensive picture of his feeding challenges.  From a sleep study, we have results that Gavin has severely obstructed sleep apnea.  The doctors and anesthesiologists are working together now to see how that will play into his anesthesia and this upcoming surgery and we will most likely see an ENT before we can move forward.  Gavin is also due for a hearing screen and then we return to the eye doctor to see if he needs surgery on his eyes.  That surgery will have to occur after he has fully recovered from his abdominal surgery.  While this sounds like a lot, Gavin really is doing amazing and overcoming obstacles every single day.  We take the challenges as they come, but these challenges are about improving Gavin's quality of life and we see so much improvement on a daily basis.  I just love this kid!

Gavin is developmentally at the age of a six month old.  And you know what?  I love it.  I am getting to thoroughly enjoy every moment of the baby stage.  He is still so cuddly and loveable.  He is a complete snuggler.  I wouldn't rush through these moments any faster.  We are getting time that others say goes by way too fast.  Every milestone he hits is after months and months of hard work and he earns every bit of progress he makes.  I couldn't be prouder of him.

Gavin has changed our lives in such a profound manner, and through that, many of you have changed our lives as well.  The prayers, the meals, the diapers, the help with cleaning the house, the phone calls, the words of encouragement, the donations of your time and talents....they have all made our journey easier and filled it with faith in times when faith was difficult to find.  I could never properly communicate the impact so many of you have had on our lives, but you know who you are.  Family, friends and strangers who have become both family and friends to us.  Please know that you have made an astronomical difference in our lives and there are wings waiting for you in heaven.

We had such an amazing turnout for Gavin's first birthday at the Step Up for Down Syndrome Walk.  Thank you so much to everyone who came out to celebrate with us and thank you to everyone that walked with us through life over this past year.

 

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