2023 in Review – A Christmas Letter

Merry Christmas and Happy New Year to our family and friends!

2023 has been quite the year, to say the least.
As you may remember, when Richard was hospitalized in late April of 2022 the Surgical Team at Seattle Children’s Hospital said that “there are no more surgical options for making Richard’s feeding tube work correctly.” That was when we switched to a central line (IV in the aorta/next to the heart) for Richard’s nutritional needs.

Richard’s GI doctor recommended we get a second opinion from Boston Children’s Hospital, who is the forerunner in the field for Richard’s niche of medical challenges, to see if there are any other options, other than a central line. The doctor we spoke with at Boston said he found it “hard to believe” there were no other options than central line, and the goal would be to figure out a way to get him off a central line, which would open back up a lot of doors for us.

In February 2023, we agreed that travelling to Boston, MA would be the best next choice for Richard and his quality of life and to be able to say we explored every possible option for his health. We started arranging an admission with the team at Boston and agreed on a May 1, 2023 admission date. Now, we just had to figure out the logistics of driving across the country to make it in time but late enough to miss the snow through the mountains. We decided to leave April 5, 2023 and drove the 3,347 miles from Northern Washington to Carver, Massachusetts in 23 days.

We want to give a huge THANK YOU to those who donated money towards this trip and those who prayed for our safe travels and for Richard and the team at Boston. We definitely felt it! We had a lot of doubts whether we should make the trip and subject Richard to another hospitalization that might not change anything, but all our uncertainties and questions were answered after the surgery. Not only did the treatment team solve the central line problem, they also found a fistula at his original surgical site that connected his esophagus to his stomach. The fistula creates a channel between the esophagus and his trachea/airway, which if left untreated would cause significant health problems down the road. We definitely felt God’s hand on this trip and this admission. When Richard was discharged at the end of May, he had a functioning, non-leaking J-tube with formula feeds, and the team completely re-did his original surgical repair in order to fix the fistula. He had a follow-up appointment mid-June where his central line was removed! Our pediatrician told us that central line nutrition is designed to meet the nutritional bare minimum so patients will survive but rarely thrive. After Richard had been switched back to formula, we noticed his energy improving, his spunkiness was back, and he also took developmental strides that he wasn’t doing before. We are all SO thankful he is back on formula, not just because of the decreased infection risk but he is back to thriving. We also are continuing to manage Richard’s near constant struggle with reflux and vomiting, as well as constipation, so even though he’s back on formula, we still have daily challenges

While we were in Massachusetts we stayed at Jellystone Park Camp-Resort which we loved- there was a lot for Sidney and Katie to do while Richard and Kyle were in the hospital and the staff and neighbors were so friendly and supportive. We left Massachusetts mid-July to slowly (this time) start our way home. We arrived back in Washington mid-October and in total we visited 20 states, 23 parks in the National Park Service system, and were able to visit family in Illinois and Utah, which was wonderful.

Sidney has enjoyed homeschooling (2nd grade currently), completing the Junior Ranger programs at the different parks, and making friends across the country! He continues to be a great help with Richard, loves reading, and has enjoyed learning cursive. One of the ways he practices writing is by sending letters, so you might get a letter from him some day 😉 He also wants to learn to play the violin so we’re looking into that as an option. He still loves playing with his wooden train set and will play with them rain or shine, inside and outside. We are so thankful he is flexible and understanding, especially with the uncertainty at times with Richard.

Sidney’s favorite experience from our trip was Valley Forge National Historical Park in Pennsylvania because of the cabins and how you can see what it was like at the time, and the Visitor Center. His second favorite when we visited the Museum of Natural Curiosity at Thanksgiving Point in Utah which he was gifted for his birthday (thank you Kreizenbeck family!). His favorite was the Rainforest play area, music rooms, and the Rube Goldberg exhibit. Richard really enjoyed this place as well. Both boys also love anything related to dinosaurs that we saw along the way.

Kyle’s favorite experience from our trip was going to Fort Knox in Maine. He said it was the best intact pre-Civil War era fort and, unlike most other forts, we had access to almost the entire fort. His second favorite experience was going to Battleship Cove in Massachusetts and exploring the USS Massachusetts, which was the first time he was on a decommissioned battleship. It had a great interpretive area with access to most of the ship.

Katie’s favorite experience was going to Mammoth Cave National Park in Kentucky on her birthday. We were able to take the accessible tour for Richard and it was very informative, had a great visitor center, and we will definitely be back! Her second favorite experience was going to the Roger Williams Park Zoo in Rhode Island with Sidney. We spent the whole day there and both participated in the bird show. We even saw Katie’s favorite animal- a sloth! They also had a dinosaur exhibit but we ran out of time. It was hard for all of us to narrow down our favorites because we were able to see so much, even with Katie continuing to work full time and our travel days.

We circled Washington for a little bit before heading to Salem, OR for our annual family Thanksgiving/Christmas. After Thanksgiving, we arrived in Hoodsport, WA to be stationary until the end of March at the Glen Ayr Resort (RV park and motel). This will allow us to focus on some much needed RV repairs/attention, medical appointments for all the family, time with local family and friends, and will allow us to get Richard into some different therapies, which we had to stop once we left Washington. And if any of you want to visit while we’re stationary, you can stay very close at the motel!

We had a virtual follow-up appointment with a Boston Children’s doctor in early December who confirmed we will be returning to Boston for an in-person follow up and endoscopy in 2025. We are already route planning and trying to figure things out, but thankfully we have quite a while to do so.

Also, as a reminder, we do have a mail service and can receive mail and letters- if you’re interested in sending any snail mail our direction, please send to:
401 Broadway, PMB 91743 Suite 100, Tacoma, WA 98402-3900.