It has been a while since I posted, and that is actually a very good thing! Tyler is getting around great. He is running, jumping, riding his bike and just being a crazy kid. We are so happy that life is normal. One of my concerns going into this VEPTR process was that life would be dramatically altered. Of course, things are different, but not in a way that impacts us or Tyler on a daily basis.
Luckily, the VEPTR rod is not hurting Tyler much. Last Saturday Tyler was jumping off some steps at his school during the Dr. Seuss Birthday party event, and on the way home he began having sharp pains in his back. I gave him some ibuprofen and he was fine after that. Although we are not sure exactly what caused the pain, we think it was either muscle spasms or that the pain was caused by the jumping he had been doing. Other than that incident, he only time he mentiones discomfort is when I hug him too hard or if he gets too rough wrestling with Joey. Even then he just tells us that his back hurts when he does something specific, then he moves on.
It is hard for me to think about the upcoming surgeries since it just seems like we finished the last one. Those surgery schedulers have a different mindset. They needed to get Tyler's first expansion scheduled, so last week they called and they gave me a date. It was a good thing, to get the date scheduled so we can plan around school, but it made me sad at the same time. I know what we have signed on for. I knew it when we decided it was finally time to get the initial VEPTR implant scheduled. That is just one of the hardest parts for me, and sometimes I wonder if I am being a bit dramatic about all of this. But the reality of this is that Tyler will need to have the rod expanded every 6 months. He will also grow out of this rod in about 3 years and it will need to be partially replaced. Althougth these upcoming surgeries are supposed to be "smaller" and quicker than the first, it still bothers me. I guess I just wish this was not a part of Tyler's life. I don't like that he will get used to going to Children's for surgeries. Despite these feelings, I know it is necessary and I am thankful for this option because I know the alternative is not great.
Enough of the complaining. The date is set to expand Tyler's VEPTR on June 20th, so until then we will just live life! I think that is all we really can do, just deal with the expansions when we have to and live normally in between.
Tyler was diagnosed with congenital scoliosis when I was still pregnant with him. Although he was and is otherwise healthy and active, he has a significant curve (about 80 degrees) in his spine. We are greatful that we were able to simply monitor his growth and the progression of his curve for the last 5 years. Now, it is time for his first surgery. My name is Sarah and my husband Joey and I want to share Tyler's story with anyone who it can help.
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