Well, we are keeping Shriner’s busy today. The genetic doctor wants full body x-rays of Carter and Porter. Carter recently got blood work done that showed he has GDF5, so we believe Porter has it, too and probably Sydney (but she’s too young for x-rays).
Here’s the definition I found, because heaven knows I don’t know how to explain it-
Growth/differentiation factor 5 is a protein that in humans is encoded by the GDF5 gene.
The protein encoded by this gene is closely related to the bone morphogenetic protein (BMP) family and is a member of the TGF-beta superfamily. This group of proteins is characterized by a polybasic proteolytic processing site which is cleaved to produce a mature protein containing seven conserved cysteine residues. The members of this family are regulators of cell growth and differentiation in both embryonic and adult tissues. Mutations in this gene are associated with acromesomelic dysplasia, Hunter-Thompson type; brachydactyly, type C; and chondrodysplasia, Grebe type. These associations confirm that the gene product plays a role in skeletal development.
Full body x-rays aren’t really possible to take with a body cast on, so Carter had to get his taken before surgery. It was pretty early, so there was only 1 x-ray tech in at the start of the process, which meant Porter and Laun stepped into help, while I held Sydney. Porter snapped the x-ray pictures and Laun helped hold Carter.
It went pretty smoothly and Porter and Laun make some cute assistants.
Carter loves anything Halloween, which includes skeletons, so it helped him cooperate when we’d tell him we were taking pictures of his skeleton. My favorite was when Porter would take a picture and comment…something like, you have a huge head Carter, hahaha.
Then trying to relax before surgery. Deep down I get pretty anxious for surgeries, it’s a fear I continually face throughout my life, but I don’t think it will ever completely go away. Especially, when that surgery is on my child. I am struggling with the thought of this kid in a body cast for at lest 5 weeks, maybe longer, depending on how surgery goes.
This girl and her long tongue, love her.
If your child has to have surgery, Shriner’s is the place. I love it hear and that seems weird to say about a hospital. They always have toys, stuffed animals and blankets for the kids. Carter got this bear, is with his dad and is on his happy drugs, so he’s pretty good at the moment.
I don’t ever like seeing my kid wheeled back into OR and I’ve seen it more times than I’d like, but I know he’s in good hands. I don’t know how my parents did this over and over again with me. Waiting for a child while they are back in surgery can be hard.
Thankfully, we had lots of distractions while Carter was back in surgery.
Porter got full body x-rays and got to go in this sweet machine.
Sydney was happy as can be for her ultra sound and to play in the huge rec room. Her hips are looking good. She has 1 more week of wearing the Pavlik harness 18 hours a day and then moves to 12 hours.
We ate breakfast together in the cafeteria.
Waiting for Carter- it’s been really nice having Porter here today.
From the rec area I could see Laun in our hospital room.
I spy me in an ornament and Laun in the room! There’s more than one way to get a couple picture!
The rec room is the best. We played basketball and ping pong.
Carter finally got out of surgery and we talked to his surgeon Marcella Woiczik. We have good news and bad news. The bad news is they did way more in surgery than planned, so he’s not going to be in a body cast for just 5 weeks like we thought, more like 8-12 weeks! The good news, the doctor is so happy with how the surgery went and thinks that even though it was more invasive, that the long term outcome of him having a better hip is more likely. She cut into his left hip joint and cleaned out the scar tissue. The hip socket is now in a better position and covered with a roof, which she did by cutting the pelvis and using bone graph in 2 places. The joint capsule was very stretched out, so she tightened it. Overall, great news, even though he will be in a Spica cast for a long time. The saddest part was when he told Laun, “I’m stuck” and it broke our hearts. For his other surgeries he was younger and hadn’t learned how to crawl or walk yet, but now he’s so mobile and to hear him verbalize that he’s stuck made me so sad for him.
He’s been surprisingly chill for just getting out of surgery and in a spica cast. He’s been snacking away.
Brothers, just watching a movie and eating popsicles.
Last time Porter and I were at Shriners together, we tried out a place called Hires and we really liked it. So Laun and Porter went there and brought dinner for us.
There’s going to be a lot of laying around today. I love seeing Sydney on that big bed.
We’ve done our share of movie watching today.
Trying to keep Carter happy with his bear, books and movies.
But the best way to keep him happy is to have snuggles with his daddy. That cord down his back is his epidural, he’s got an IV in and a catheter in- he’s got tubes all over, but not as many as Cooper had!
Only one adult can spend the night, so I stayed and I also have Sydney with me (that’s what happens when you have a nursing baby)! Wish me luck tonight. I felt a little lonely and anxious as I watched these 2 walk out to head home. In that circle, looking so tiny and far away, is Laun and Porter. But how can I be lonely, when I’ve got my 2 babies with me!?
And let me tell you, with Carter’s bed, mine and Sydney’s play pen and all our stuff, we are filling up this room! Carter is enjoying a popsicle and watching the minion movie (which he pronounces like lemon movie), that’s pretty much what he’s been doing the whole afternoon and evening. What a trooper he’s been!
