Our first physical therapy sessions started yesterday, Monday, and it was almost like being teleported to another world. Prior to the surgery, I had only seen fixators on the Internet. I've always been a bit scared by them, as the pins and wires take some time to get used to. Monday, however, I saw TONS of people, adults and children, in all different types of fixators. Some went from ankle to hip while others were lengthening 2 legs simultaneously. It really was incredible. It was the first time in my life that I realized that my son isn't the only one with this problem. I've also realized that my son has a lot to be grateful for as there are so many children who have it far worse than Caleb and I have put our circumstances in perspective. I wish more people could see what I've seen these past 2 days on what these children go through every single day. They are absolutely incredible and I almost feel proud that my son is amongst some of the bravest and strongest children I have ever seen.
Prior to the surgery I was so terrified that the hospital would be the hardest part to surgery. Boy, was I wrong. We were so blessed that Caleb did so amazing. He hardly was in pain or scared. He isn't a 'rough and tumble' little boy, either. He's the kind of boy that loves to cuddle and loves his teddy bears and not particularly into sports, a 'mama's boy'. I thought this surgery was going to be terrifying for him. It wasn't too long ago that I couldn't even send him to school (kindergarten) without him having a meltdown because he was so scared to be away from me. I have know idea where he has been getting all of his courage and strength but it is so remarkable and inspiring to watch.
In physical therapy you hear lots of kids screaming and crying, something I don't think I will ever get used to, but many parents have assured me I will. This is very hard for me because I keep wondering if my son will also have to experience this degree of pain, as I can't imagine that hearing my child scream could ever become tolerable. So far, physical therapy has been somewhat pleasant, being that we are only two days into therapy and haven't started turning struts. Caleb is getting lots of massages and even told his physical therapist today, "I can get used to this!". Hilarious!! She was cracking up.
Bending and straightening the knee has had him in tears today and yesterday and I've learned that this can sometimes be the biggest challenge with lengthening. While it might not be painful to stretch bone, it is incredibly hard for the muscles and tendons to keep up. Lots of FH kids have problems bending and straightening the knee. We will have to continue with our stretches at home and make sure we are doing everything the PT tells us to do. Everyone keeps telling me that PT is the most important part of lengthening and I finally understand why.
Yesterday was the first day the bandages were taken off from the surgery. This isn't a pleasant experience, but I knew I had to keep it together for Caleb. Honestly, I wanted to throw up when I saw all the bars and wires and all kinds of horrible-ness going through my child's leg. I wanted to run out of the room but instead I took a deep breath and made a remark to Caleb that it was kinda cool and not so bad. I totally lied. Today, however, when I looked at all the bars and wires again while they were instructing me on how to do pin care, I wasn't as bothered as the day before. So it goes without saying that it really does get better. I'm getting stronger because I know I have to.
Turning starts tomorrow and if all goes well we will be stopping sometime at the end of Sept. Whoo hoo!! We are now 6 days closer to the end!!
Turning starts tomorrow and if all goes well we will be stopping sometime at the end of Sept. Whoo hoo!! We are now 6 days closer to the end!!
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