Today marks the end of Congenital Heart Disease Awareness Month, so why not end with an update. This update is long overdue, and we apologize that we have been out of touch. We know you continue to support Beckett from all over the globe, and we pray you know we do not take that for granted. In short, Beckett continues to thrive. Praise be to God! But let’s go back in time, roughly a year now, and I will try my best to catch everyone up.
Beckett loves school and is sad when he misses for illness or appointments, so when COVID hit last year and it was cancelled all together, Beckett struggled more than we had anticipated. He did not adjust well to the lack of routine he would have had had he been in school, nor did it help that some days Jonny was home playing teacher and some days it was me. He missed his teacher, his friends, his normal. While this did not set him back any more than the other kids experiencing the same scenario, it certainly did not propel him forward. His first-grade teacher recommended keeping him in first grade another year, for multiple reasons, mainly being social development. Jonny and I wrestled with this through most of the summer, literally up until about two weeks before school started. After many conversations between us, asking Beckett his feelings, and wise council from friends, family, and school professionals, the decision was made to allow Beckett to move on to second grade with his peers. So far, this seems to have been the right decision, and we pray in ten years we still feel the same. Beckett has had and continues to have a wonderful group of teachers, aides, and even bus drivers that pour into him daily, address his specific needs and love him genuinely. We could not ask for a better situation. They constantly work to make adjustments as he both struggles and succeeds, and he continues to move forward in closing the gap of his delay.
From a medical standpoint, Beckett continues to have little hiccups along the way, but is overall in very good health. He had pneumonia in January but stayed out of the hospital and only missed a day and a half of school. He is also having some feeding issues, nothing major, but he has a difficult time chewing and swallowing meats, which he desperately needs in his diet. We have been back in touch with the speech therapist he had for over four years, and we are looking to start him back into some monthly appointments to retrain him in this way. He wore a 24-hour Holter monitor in August, which monitors heart rate and rhythm and that was normal. Riley Hospital has recently started a Fontan clinic (Fontan is the name of the final open heart surgery Beckett had to repair his defect), and Beckett was seen there this past month. It is a multidisciplinary clinic staffed by Cardiology, social work, nutrition, and others when necessary, to view Beckett in a more wholistic manner. This clinic is in keeping with the top five pediatric cardiology/cardiovascular surgery programs in the country and national standards. The goal is to monitor current needs as well as early recognition of potential issues. Beckett will be seen by this clinic every 3-5 years, and they will help ensure he isn’t missing any necessary tests, procedures, blood work, etc., as there are guidelines as to how often things are to be done. With that being said, Beckett had a great report from Cardiology. They continue to be pleased with where he is and have no areas of worry where his heart is concerned. However, Beckett did require significant blood work prior to this appointment and his protein levels are low as is his HDL (good cholesterol). He needs to have adequate protein intake which is why he needs to be able to eat meat and is therefore working with speech therapy again. We have also been trying to find other areas of high protein to work into his diet in the meantime. They weren’t significantly concerned with his low HDL, because his LDL was also low (which is good), and they said that could be reason his HDL is low, because his body doesn’t need to make an excessive amount. But they still want us working in healthy fats, which we are trying to increase. They also monitor his liver very closely. Studies show kids with a Fontan procedure often have liver issues due to decreased blood flow. Beckett has had elevated numbers in the past, they have done ultrasounds and monitored his labs, and they have always returned to normal. His GI doctor is in close contact with a liver specialist in his department, and the clinic stated they would also pass his information to her as well. In the future Beckett will need a FibroScan to measure the density/fat buildup in his liver. They will also do a liver biopsy with his next heart cath as these kids are at higher risk for developing liver cancer. Again, this is all proactive treatment so that things aren’t missed in the beginning stages should they occur. Beckett will also be seeing a geneticist as they work to see if these heart defects are linked to specific genes, as well as undergoing neuropsych testing to see if they are ways we can better assist him. At the clinic he also saw social work who talked to him about friends, school, his feelings, and his awareness of his defect. They will also help set Beckett up with a counselor/therapist should we choose as these kids are prone to anxiety and depression. That feels like a lot of information, so if I missed something, or you have questions, feel free to reach out to us. It was a very encouraging appointment, and as we were leaving the nurse said, “I remember when he arrived here. I never thought I would see the young boy standing in front of me that I do today. He is truly a miracle”. Amen to that!
As for the fun stuff, Beckett continues to play baseball, soccer, basketball and take swimming lessons. We are also looking into placing him into some type of martial arts for both discipline and coordination. He has recently become very interested in drawing and this is a great tool for him as his fine motor skills continue to be delayed. He loves to watch how to draw videos on YouTube, and is getting so good! He also recently placed second in a math game/test at school, and he could not have been prouder. This past summer he was able to attend a week at summer camp the same week some of his cousins were there (I was able to volunteer as the nurse and keep a distant eye). He loved it and has already asked to go back this summer. We spent a week with Jonny’s family at Camp Maranatha on Lake Michigan, but unfortunately missed our annual summer vacation with my family at Lost Lake Woods Club due to COVID and hope this summer will be different. Beckett loves going up there where he can ride the golf cart looking for deer, ride horses, and swim in the lake. We also moved last summer, and Beckett loves that our new house has a playroom and a huge yard. He has loved all the recent snow and would play in it for hours if he could stand the cold a little better.
This month I’ve have spent a lot of time reflecting. Reflecting on the days we have endured, the blessing that Beckett is, and the testimony of his life journey. It is easy to get caught up in the normal hustle and bustle of the day to day and see Beckett as a happy and healthy young boy with little concern for his heart defect (not altogether a bad thing). But the reality that has hit me hard this month is that Beckett will never be “normal”. His heart will never be normal. He could take a turn at any moment and his life is not guaranteed to us. Beckett’s congenital heart defect never gets any less serious. Sometimes as his mother, the fears I have for him and over his life can be overwhelming. However, in the midst of these worries and fears, he lives life to the fullest just as “normal” as any other eight-year-old boy. It is easy to get caught up in the what ifs of his life, but just as God was faithful during so many uncertainties in that first year, he will continue to be faithful in the exact plan he has for Beckett’s life. So, we will continue to cherish each year, each day, each moment we share with him on this earth. One day at a time.