Lighter by 2
Posted on March 29, 2025 by melelllan
A little over a week ago, Katelin had her last follow up for the surgery which corrected her kyphosis. It had been severe, but she had compensated well and for many years it was stable. But there came a time when the lungs became compromised and that was my line in the sand. She recovered so quickly Dr. Newton was pretty shocked! We were very fortunate that all follow-ups showed everything looked good. So now it was the “sign off” checkup.
The x-rays were amazing, nothing was out of place. Her big zipper was perfect. I’m often told that her scar is a masterpiece, it’s so straight. He watched her walk, balance on one foot, follow commands, be calm. He was blown away by the improvements made since starting Daybue. He just radiated happiness for her and I think part of it was that he got to see what a difference it made, as a doctor. There were a lot of “wows” and “no kidding!” It was probably the happiest doctor’s appointment she’s ever had. He’s been a big part of our journey over the last nine years, and I will miss him.
And then there it was- crying. Relief that as of right now, she has no more orthopedic issues and will never have to see him again. Even though I knew, in my heart, it was all fine, being told my the doctor that it was so makes it a solid reality.
From THIS
To THIS
A few days later, we were off to her cardiologist appointment. This one I was dreading. I had a cold, dark fear that really hasn’t let go for the last six months. It had me holding her more often as she fell off to sleep; telling her I loved her a few extra times each day, and taking a deep breath if I woke up before she did.
One fairly common symptom of Rett syndrome is something called Prolonged QT syndrome. The length of the QT measures the time from when the ventricles contract and finish relaxing. ALL children and adults should have a yearly EKG to check for it. This is one of the standards of care for Rett syndrome. Prolonged QT may never cause any issues, but when it does, they will be sudden and may be fatal. Symptoms range from no symptoms, to dizziness and fainting, to dysrhythmia, and sudden cardiac arrest.
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I thought Katelin had outrun it, until six months ago when it showed up on her EKG. One would think, since she’s never had it before, that it wouldn’t be so bad. Nope. It was horrifically long. I got out “how bad…” and the doctor said, “It’s bad”. Now Katelin had never shown any symptoms and for that I am very grateful and quite frankly amazed since I was so horrified and freaked out by how long it was.
She was started on a liquid beta blocker and last week I took her back for her follow up. Bam! Normal EKG. You couldn’t find two more pleased people on the planet in that moment. The doctor beamed when she told me and I, being a sap, just cried. You never really know the weight of something until it’s gone. She’ll remain on the beta-blocker and be safe. A life ring thrown to a terrified parent and a girl who got to be unaware. I know we dodged a bullet there and I want to reiterate how important those yearly EKGs are. Please get them.
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