Loving Owen: Bucket List Accomplishment

Owen has checked 'Day at Santa's Village' off of his bucket list. On the Saturday prior to Labor Day, our family journeyed in to the mountains of New Hampshire to find our own version of the North Pole. We were lucky enough to bring along Ellie's Godparents (and my cousin and cousin-in-law), Kevin and Carrie. It was a great day for our family and I am so thankful we were able to have Owen join us. After a long day of mini-donut eating, water slides, twirling rides, and reindeer feedings, we drove west to Littleton, NH to stay at a hotel with an indoor pool. This was Ellie's first hotel/pool experience and she really enjoyed swimming the night away.

Owen did not take a dip, but he did sit in a lounge chair pool-side with me for part of the evening. At one point, a family came into the pool area and almost immediately surrounded Owen and me. At first I was a bit confused about the attention, but after chatting with the mom and her lovely son it was apparent that a great moment with Owen was unfolding. This family was also at Santa's Village and had noticed Owen and our family. They wanted to come over to us to say hello, but decided to give our family some privacy. Seeing us at the same hotel that evening provided them a moment to introduce themselves and share their story. Before me stood a lovely young man who manages some serious medical challenges. He proudly showed Ellie and Owen his scar on his belly where he once also had a g-tube placed. He spent time touching and talking to Owen and sharing his story with us. It was amazing to see what kindness, compassion, and interest this preteen boy demonstrated to my children. I can only hope that someday Ellie will behave with the same grace and maturity. It was a great experience to wrap up a wonderful day as a family enjoying a traditional New England vacation.

In other 'Owen News', he has developed a granuloma around his g-tube site. Apparently, this is very normal with new g-tubes and we have been visiting Owen's wonderful peditrician to slowly burn it off with silver nitrate. Owen has also needed his anti-seizure medications adjusted. The past two weeks have brought near constant seizures. Owen has gained a bit of weight, he is now up to 18.5lbs. My hope is we are not seeing increased seizure activity, rather a need for more medication due to weight gain. We will be visiting the neurologist on Monday so I will know a bit more then. Owen seems to be developing what I have labeled 'phantom fevers' over the past month or so. He will spike a 101-102 fever out of the blue, but it will then go away with no other symptoms. Motility continues to be a concern- I noticed twice yesterday that he had green liquid in his belly when opening up his tube. This is concerning because he does not have regular or frequent bowel movements. We are also now venturing in to the area of pressure sores. This has always been a back burner concern, but he seems to be developing redness on his buns, hips, and tailbone area after just 20 minutes of being in one position. We are now needing to adjust his position every 20-30 minutes to help prevent breakdown of the skin. He is also sharing 2-3 projectile vomits with us each week. I am considering handing out plastic ponchos for people who come to visit us at our house.

These are the medical concerns I really hoped and prayed we would avoid with our sweet boy. I long ago gave up any control on this journey. We are just continuing to provide love and care for Owen. When awake and alert, he seems very attuned to his surroundings and is so lovable. On Sunday, I will be running a half marathon in honor of Owen's birthday and for another sweet little girl, Lizzie. Last year, my friend Jenny and I ran a 5K on the anniversary of Owen's diagnosis. I decided to set a goal of a half marathon to celebrate Owen turning two. It amazes me that my guy is already a toddler- let the tantrums begin...