Well, it has been a while, almost a whole year. To put it simply, Beckett has been thriving. We have been just moving through life, which is a wonderful blessing.
This past year we have enjoyed so much fun. Beckett joined the middle school golf team and did really well for his first year and golfing a full 9 holes. It was such a joy to watch him walking the course with his dad and grandpa giving him advice and encouragement. He also takes private lessons to improve his skills. We have been on vacation to Michigan, twice, he went to Miracle Camp, golf camp, the zoo, Peyton Manning Children’s Hospital Homecoming at the Colt’s stadium, the pumpkin patch, Fall Break in Archbold complete with a combine ride, and more. We have made so many family memories. We also welcomed two cousins to the family this year and I cannot explain how much Beckett loves a baby. It is truly the sweetest thing.
Beckett continues to do well from a medical standpoint. He started seeing a behavior therapist this summer to help with some of the issues he struggles with neurologically. She comes to the house and he is always excited to see her. He continues to see a counselor and he loves the one on one time playing and talking with her.
Friday he had an appointment with the Riley Fontan clinic. He goes to this clinic once about every 5 years and has a full day of testing and meeting with multiple specialties. His day began with an echo, with our favorite technician, Nancy. She has been doing them since he first went to Riley. So many people saw him and commented on how they can’t believe how big/old he has gotten. Trust me, we can’t either! He then had a pulmonary function test done. It showed some pulmonary resistance/scarring on the lungs but that is to be expected with kids who have had a Fontan. He went from that to a stress test where they put him on a lot of different monitors and had him walk on a treadmill at increasing speed and incline. He did extremely well on this for his age and condition so they were pleased. We saw a dietician who recommended a few minor changes, but overall his labs looked great. We also saw a psychologist and social worker. He finished the day with a Fibro scan to look at his liver because of the change in anatomy following a Fontan surgery. The rerouting of blood flow puts increased pressure on the liver and these kids are prone to multiple different liver diseases. We won’t get those results for a couple weeks. We continue to be grateful for good health and for a comprehensive medical team making sure kids like Beckett get the best possible care.
So, as a whole, Beckett is doing great. He continues to be a happy kid with a positive demeanor. We couldn’t be prouder of the challenges he continues to overcome. He has worked incredibly hard this year already in school and has the grades to prove it. He was so proud of himself when he brought his report card home. School takes a lot of time and effort for him, significantly more than most kids, so to see positive results has been very encouraging to him. He loves his siblings well and is always looking out for them. As we head into the holidays and especially Beckett’s birthday, we are excited for all this next year has in store. As always, thanks for continuing to be with us on this journey.
Yesterday was a good day. Beckett’s cath ended up being completely diagnostic, meaning they saw nothing abnormal that required intervention. Praise God! Anesthesia also double checked about the liver biopsy because he was willing and wanted to get them done together. Due to Beckett’s liver function labs coming back as normal, the specialist was not concerned at this time and said the biopsy was unnecessary. Yay for one less thing! Beckett always comes out of anesthesia a little grouchy so he was begging to go home. Once his bed rest was up he jolted out of bed, which caused him to vomit. That of course didn’t help. The car ride home was a little rough as he was nauseated, whining and his groin was bothering him where they do the cath, but thankfully I had some zofran on hand. He fell asleep for the last part of the trip which was a blessing. By late evening he felt well enough to eat and began acting more himself. He is back at school today. Thankful for great news and more happy days with our boy! Thanks for all the prayers and encouragement! We felt them all. I pray you all know we read and treasure each comment, text, call and personal interaction! Thank you!
Where do I begin? This has been an eventful summer and start of the school year. Let’s get the heavy out of the way. This past July, while on vacation with our family in Michigan, Beckett had a day where he seemed not himself. He was tired, complaining he couldn’t catch his breath, and his oxygen saturations were lower than his normal. We called the doctor and made him spend time resting. Thankfully, he didn’t have any more issues while we were there. The day after we got back, his cardiologist was able to get him an appointment. His EKG had some abnormal beats, but nothing too concerning, so he had him wear a heart monitor for three days. We saw the doctor again two weeks later. The heart monitor also showed some abnormal beats, but they were all coming from the upper chamber of his heart and not the lower, and were also around 2%, which he said they just want less than 3%. So again, nothing he was concerned about. He also had an ECHO that showed everything was working well from what they could see from the outside. So, the next step was to perform a heart cath in order to look at numbers and his anatomy from the inside. That is being done tomorrow, 9/24 and we would greatly appreciate your prayers. We also saw a liver specialist last week because kids with a Fontan, which is the surgical repair Beckett had done, will end up with some degree of liver disease. This makes them more prone to cirrhosis, as well as liver cancer. There is no way to tell what degree of liver disease they will have, nor is there any treatment for it. So, they monitor liver tests every year. This is the first year Beckett is having this done. They were hoping to do a liver biopsy as well as a liver ultrasound while Beckett is in the cath lab tomorrow so that he only has to have a sedating procedure once; however they were unable to make it work. He did have liver function labs as well as a hidoscan last week to check the scarring of his liver and his liver function. The liver function labs were normal so they aren’t as concerned about doing the biopsy at this time. Beckett has looked good for the most part since that time on vacation, so we are optimistic of good results tomorrow.
Beckett also saw his neuropsychologist two weeks ago for a full day of testing. He has these evaluations about every two years, and I have been anxious about it since the last one. Last time they were concerned Beckett might be diagnosed with a global cognitive impairment, which they described as a fairly severe label and one we didn’t necessarily want. They had given us lots of recommendations on ways to try to help Beckett over the next two years, and we did our best to get him services and help him at school and home while having three other children and allowing him to be a kid himself. Beckett has also been on ADHD medication for over two years. Needless to say, I have been dreading that we didn’t do enough. GOOD NEWS: he does not have a global cognitive impairment. He does still remain significantly behind grade level but he made improvement in all tested areas. He continues to have issues with distractibility and impulsivity, but I don’t know that we can ever get that to go away. After doing my own reading/research last spring, I requested Beckett be tested for dyslexia while at this appointment. Beckett is still reading at about a 1st-2nd grade level. The biggest plus from these evaluations, was that Beckett was diagnosed with a reading disability/dyslexia. While this is another diagnosis and hurdle he now has to climb, it gives us the ability to get him the help he needs. Overall, the appointment went really well and Beckett did great considering he has to complete their tests/evaluations for around 5 hours.
Now for the fun stuff. Beckett again participated in Eastbrook’s Summer Academy and had a great time both learning and doing enrichment activities. He got to be the bat boy/dugout “coach” for Milo and Declan’s baseball team, and was even given a medal when they won the tournament championship game. He went to Michigan for a family vacation and got to play golf with the grown-ups. He went to Miracle Camp and had a blast! He participated in the neighborhood triathlon, the town labor day activities, many bike rides, and family sports in the yard. We went to the zoo. He went to Ohio to see family and our annual visit to the Fulton County Fair. He moved to the middle school this year as he is now in sixth grade. He gets to change classes, have lots of different teachers, do a locker combination, and see his grandma there almost every day. Beckett is in his second year on a robotics team in town. He is the 6th grade football team manager, which has been awesome for him to still be a part of the team even though he can’t play. This year he has also chosen to play golf and takes private lessons every other week from Jonny’s friend/IWU golf coach and Beckett loves it. He hopes to be on the 6th grade team in the spring. He continues to see a counselor every other week and I have allowed him a little freedom to ride his bike there himself. This is probably a bigger step for me than it is for him, and I have a watchful eye at the clinic that makes sure he is there safely. He also got to join the church youth group now that he is in middle school, as well as help in the kids area on some Sunday mornings. He is a wonderful brother and I wish you were all able to see how well he takes care of and loves on his sister. Life is busy, but it is so full of fun, laughter and love!
With all of the life going on, I must take a moment to both acknowledge as well as thank those who are helping us stay afloat. From taking our kids to events, from events, babysitting, or just being present in their lives, we are beyond grateful to have you supporting us in life. We are especially thankful that you are coming alongside us and cheering on not only Beckett, but the rest of our kids as well. Our family is not short on love from those around us and we could not ask for a better community. You know who you are. Thank you for showing up in our lives. It truly takes a village.
We have been on cruise control for quite a few years now, which makes it easier to push to the back of my mind that Beckett’s health is and always will continue to be fragile. This summer thrust my mind and emotions back into those early days of constantly worrying when he would have a problem, and how bad it would be. We have sung a song in church the past two Sunday’s called “I Believe” by Charity Gayle and the lyrics have resonated deep into my core. They have been a very empowering reminder that God, “You are who you say you are. You do what you say you’ll do. You are always faithful”. God is for me, but more importantly he is for Beckett.
11 years ago today was Beckett’s first open heart surgery. As the kids are getting older, it’s been even more meaningful to explain the miracle of Beckett’s journey with them.
After talking through the surgery, Milo and Declan hugged Beckett, told him they love him and that they are happy he’s their older brother.
Yes, they do fight as brothers…but their brotherly-bond is noticeably growing every day. I love my kids. And we love you, Beckett! ❤️ We are so grateful for all these years we’ve been given with you.
As some of you may know, we have been able to meet the newest member of our family a few days ago, Lennon Davey Rupp. And with each birth of our children we are keenly reminded how precious and fragile life is. We are so grateful to add this beautiful daughter to our family, and so grateful for all her brothers. On this day, 10 years ago, our journey of being parents was being challenged and threatened on a daily basis. My how far we’ve come from those dark days. However, I am oddly grateful for the lessons Beckett taught us as parents to never take our kids for granted. This, among many other invaluable lessons, have remained true with each child. What a beautiful family we have been gifted…and we will never take a moment for granted!
Starting them young. ⛳️ What a treat to spend some time with Beckett this weekend on the golf course. He’s been asking to go for weeks, so now that it’s no longer snowing 😒 we were finally able to go out together and work on our swing. 🏌️♂️ #fundamentals
I know we haven’t posted in a looong time, but please be assured that simply means we are just living life to the fullest. Beckett is doing great…and to be frank, it’s been pretty smooth sailing (only a few bumps here-n-there…but nothing worth expounding upon).
What’s amazing is that this little goober turns 9 today! Nine!! 😳 Beckett, you completely changed our lives 9 years ago…and we wouldn’t change a thing. Happy Birthday bud! 🎂
Heart of Beckett 