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Carson’s journey with congenital scoliosis.

01/10/2025

4 years post op!!!!

Long after all of the kids had recovered and gone home, Carson was still in the OR. 12 hours from pre op to when we got to walk into the PICU to see him. It was a long, long day. Pre op nurses actually recommended we leave because it could be difficult to watch other parents come and go. We walked the streets of NY, grabbed coffee, tried to eat, I ran out some anxiety in the hotel gym while Mike napped (he was so good at being chill…he slept his first surgery too! 😂) showered, and still sat for 4+ hours in the waiting room before his surgeon came out.

What I can say now is I am so grateful that the long surgery and recovery lead us were we are today. Carson has had zero complications! He had his yearly X-rays end of July and he has had growth in this spine. His Shilla rods allow for growth and you can see on this years xray how close the first loops are from leaving his rods! Overgrowing his anchors would be a great “complication”, meaning he has outgrown the max rods they could place in 10yr old tiny, Carson. (Wish I took a pic of the xray)

We continue to be so thankful for the ability to seek care where we thought it was best for him and for the amazing support system we’ve had along the way! 💚

01/02/2025

Carson started playing tuba last year. He’s always joked that even though he was smaller it doesn’t mean he can’t handle a big instrument! I think that’s partially why he picked it! This year they were offered the chance to compete in a solo competition and he signed up. He preformed today and came out with a GOLD! So proud of you, Carson!

30/09/2024

3 yrs post op today! Carson had his yearly X-ray in Aug. Doc said everything looks great and he’s still getting growth in the unfused areas of his spine! We continue to be so thankful for a successful surgery and to be without complications this far! 💚💚💚

29/03/2024

2yr old Carson vs 12 yr old Carson at Jump & Jack's! In March of 2014, Carson got his first (of 12) Mehta casts at Cincinnati Children’s Hospital. This required us to be in Cincinnati multiple times a year. After his very first cast, we went back to the hotel for him to sleep off anesthesia and then he was ready to go. We found Jump and Jacks and that quickly became the place we went to each and every time he was casted! Our last visit was Jan 2018 and he has been dying to go back ever since. So today we made a stop in Cincinnati on our way back from our spring break in TN. Crazy to think Carson was an only child in the first pic and now his youngest brother is 8!

02/10/2023

Just a little update…yesterday (9/30) was 2 yrs since Carson’s big surgery. We are so incredibly blessed that he hasn’t had any complications so far! He had an X-ray in Aug and Dr Lenke says he looks “very good”!!!!! We will need to continue to get yearly X-rays done locally and mail to NY. No need for more frequent X-rays or visits to NY! That’s huge! This past year is the longest he has ever gone in his life between X-rays! Scoliosis parents are often trying to balance the need for X-rays vs the radiation exposure. Pic below (for those that don’t know) is of Carson in the EOS imaging machine…it’s a low dose radiation xray! This time we traveled to Riley Children’s Hospital in Indianapolis to get this done.

30/09/2022

One year ago today, at this very moment, Dr Lenke came out and showed us your new and improved spine. The spine that would give your left lung the room it would need to grow! I get so emotional thinking about this day and the days that followed. It was a long surgery and a very rough several days. When you turned that recovery corner, you soared and have been doing so ever since! I’m so proud of you Carson. I’m so thankful for an amzing medical team and the ability to get you the best care. Happy 1st Spineversary, buddy!

03/08/2022

Carson’s in person follow up went great! Hardware is all in place! He is released for full activity at school this year. X-rays not needed for a full year!!! This is the longest he will go without an X-ray! We don’t even need to follow up in person unless we have issues! 💚💚💚

02/08/2022

Carson and Mike fly to NYC today for Carson’s in person follow up. In order to limit radiation, we opted to skip the 6 month xrays in May knowing we would be getting them for this appointment. Carson has been doing extremely well and continues to be pain free. We’ve had a busy summer so this is just a quick over night trip. Carson has his trip all planned out! Please pray for safe travels and a great report at his appointment tomorrow morning!

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