Though it’s only January we have already seen a small glimpse of how our world is going to be turned upside down.
We had a great December celebrating the Christmas season. We were able to join Jordan for his Winter Fest at school. We enjoyed making cookies, playing with a parachute, hoisting bows into the air and taking our turn playing in the pretend snow. It was great to see how Jordan interacts with his classmates and teachers.
This was the first year Jordan has really shown interest in the Christmas season. He was so excited to turn on his “trismas tree.” To be totally honest, he hasn’t been interested in opening presents the past few years and this year wasn’t any different.
After we read the Christmas story together, we went around to find the baby Jesus because we don’t have him in our nativity scenes until Christmas morning. The one set was next to the Christmas tree with all of the presents. Instead of looking into the packages, Jordan held baby Jesus saying, “Merry Trismas, baby Jesus. Merry Trismas!”
Our season was also welcomed with our 6-month visit to the Myelo Clinic at Akron Children’s to meet with his specialists to assess his progress. We started the morning with X-rays of his hips and ultrasound of his bladder. We were pleased to hear Jordan’s bladder is functioning well. We may even be able to look into potty training.
We met with Dr. Garcia for the first time about Jordan’s gastric system. He educated us on a large clean out. The good news was that during his exam there was evidence of some normal tone. We will follow up to see where we go from here.
Our main concern was Jordan’s pressure sores he has acquired from his bracing and changes to the structure in his feet. This has meant he wasn’t able to use his bracing for a little over a month. It’s tough trying to explain to a child who asks for his braces why he isn’t able to use them.
After Dr. Jones’ examination of his X-rays, he strongly suggested a consult with Dr. Adamczyk who specializes in hips. Unfortunately, Jordan’s right hip is continuing to move outward. This means the chances of dislocation is rising.
After our appointment with Dr. Adamczyk, a lengthy discussion with Dr. Jones and a lot of prayer, we have come to the conclusion we need to take action to allow Jordan to be the best Jordan he can be by having an extensive surgery with a very long recovery to help his hip realign where it should be.
There are concerns with the lack of muscle. There’s a chance it may not stay in place. However, Dr. Jones feels Jordan is a great candidate for the surgery because he has been walking with his walker, he’s a motivated little man, and we are willing to participate in the recovery process.
Besides our preparation for a major surgery for out little man, we are in the process of trying to sell our home. We’ve been meeting with a builder to design a home to be accessible for our little man and spending time as a family because that’s what we love to do the most.
In the meantime Jordan has started with a new therapist for aqua therapy. He enjoys his time in the pool. In fact during his last session, he swam with his noodle over to the ladder, climbed up, turned around, sat down and said, “This is da life!”