The rest of the day was full of ice cream at the mall, another celebration present, and SWIMMIMG!! He went in and actually moved those little leggies. We’ll continue with swimming as much as we can to build his muscle back up again.
We spent the rest of the day at Shriner’s getting X-rays with Auntie Donna, who has been taking X-rays of Luke since he was a baby. Met with Dr. Fassier and his legs are looking good. It will take him a few months to straighten his knee all the way so standing will be a challenge until then. Swimming and keeping his legs active is a must to get them working again. I’m hoping to slowly start him on his bike in a few days👍🏻
Luke was a little scared for cast removal, but gifts at the end make it better! Caydence was the Boss Lady to make sure he was doing ok, and always bringing him his drinks.
Well the hard part is over. It’s done. Luke had well-needed rods in his tibias and it can’t be taken away by fevers or anything this time. I was so nervous of him getting another fever I kept him in isolation for seven days. Seven whole days at our house, which of course we let him play outside. The only time he left the house was to go to ortho to cast his leg. That break didn’t bother me as much as it usually would (no as an OI parent I NEVER get use to breaks. They’re awful) because I knew we had a new surgery date. If we hadn’t yet then believe me I would had been on the phone with Montreal the next day. Luke also has mentioned to us that he asks Jesus to give him fevers before surgeries. This was proven even more when his dental surgery was cancelled a few weeks ago because, surprise, surprise, he got a fever. He told me he didn’t feel like getting new teeth. It’s clear to me now that he does work himself up before surgeries. So my new approach for this surgery (one that not only does he badly need, but his amazing surgeon is retiring in Feb.) was to not mention a thing about it. Yes lie to my child. I hated doing it (I don’t even like to lie about Santa Claus) but it was for the best. We told him the whole time we were going to get him new leg braces. Pretty much everyone at the hospital was against me doing this and that his trust in me would be lost, but guess what, it worked. And surprisingly Mr. Smarty Pants has not accused me once of lying to him. He’s completely fine with this temporary situation and can’t wait for his new legs.
Here’s some post-op photos. The first day was, of course, the roughest. Not so much pain, but scared of the hospital and everyone who came through the door. He wouldn’t let me leave his side. I told him it’s just nurses bringing you medicine, doctors checking your legs, and workers bringing you food and changing the trash. ALL things mommy would be doing at home, so now I just get to be with you. Second day was much better, and as the days went on he was talking and becoming more comfortable with the nurses. They were all amazed at how easy he took medicine. Most would be in shock and say they’ve never seen a kid like him in 10+ yrs take medicine so well. He’s smart and would tell them he knows it makes him feel better.
If you’re a parent whose kid had surgery or in the NICU, etc. you know the best part is when they finally get disconnected from all those wires and you can hold them in your arms again. They’re free. We changed him out of his gown, held him, and went right to the playroom.
It’s going to be a loooong 5 weeks of him in these “casts.” They’re actually just back slabs with ace wrap. But drs orders, 5 weeks. Plus add a week when he broke. That’s 6 weeks no bath. Always the bummer to me. Plus constant leg elevation, so a pillow in his wheelchair to raise his legs. His pain (and recovery) is NOTHING though compared to femur rodding, so all is pretty well!
Here’s some photos leading up to Luke’s surgery. Wednesday he was fitted for his back brace (why wouldn’t a 4-yr-old boy want a cool cheetah pattern 😂🐆). He needs to wear the brace pretty much 20 hrs a day, especially when he sleeps. Not crazy about this, but there’s not much we can do. The brace will hopefully straighten his spine so he won’t need spinal surgery in the future.
On Thurs surgery wasn’t until 12:30 so we had time to spare. We got to hang out and spend time in the playroom. He unfortunately fell on Tues. and hurt his arm so had a splint on most of the time. The staff gave him a giant superhero named, Myles, that he loves by his side.
Other photos include him smiling for X-rays and me taking him back to the OR.
Alright people! We have NEWS!! Luke had SUCCESSFUL bilateral tibial rodding. We were sneaky and didn’t want to say much so we didn’t jinx anything. We had him in isolation all week so he didn’t have any fevers this time. Thank God it’s finally done!Luke will now have two straight and strong legs🙏🏼 He’s doing great!
Great day! Just one appointment then free time all day. Hung out in Shriner’s amazing play area for awhile. I love Luke playing with the French speaking pink castle 😂 Arcade then we saw another movie. His idea not ours. This boy loves seeing movies in the theater.
We gave him his special surgery bath with the sterilizing soap and he passed out.
A lot better day today! Pre-op appt for surgery took around 3 hours, but it was very informative and the Life Works program through the hospital did an AWESOME job of explaining the surgery to Luke, which you can see in the videos. I learned a lot about his surgery as well! He is now being a little more open when it comes to talking about surgery.
After lunch we were able to do FaceTime with his preschool class, which was so much fun for Luke and all his school friends!
We then went off to the dentist downtown Montreal, which was for a research project Luke is in. Shriner’s does so much for us that we usually agree to all research type of projects.
After the dentist we saw a movie, which is rarely something we get to do since we usually have Caydence.
We were so close to having a free day tomorrow, but will have to go back to the hospital to do another fitting for his back brace. Then Thurs is the big day!