Heart of Beckett

UPDATE

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. 

I Believe by Charity Gayle

From the beginning

You’ve been unchanging

Age to age You stay

Constant You remain

Every mystery

The questions I’ve carried

Are safe within Your will

So I trust You even still

I believe You are who You say You are

You do what You say You’ll do

You’ll come through, You are always able

I believe You’ve already made a way

So I’m running through parted waves

Straight to You, You are always faithful

Jesus, You’re for me

Holding me steady 

Every word You speak

Is a promise that You keep

This firm foundation 

Cannot be shaken 

My God, You never fail

Never once, You never will

I believe You are who You say You are

You do what You say You’ll do 

You’ll come through, You are always able

I believe You’ve already made a way 

So I’m running through parted waves 

Straight to You, You are always faithful

I believe I believe