Jordan’s Myelo Clinic appointment was scheduled for last Thursday to meet with his specialists and have some testing for information regarding his shunt and renal (kidney) function.
He usually has an ultrasound for both of these tests but due to his soft spot closing, he will now have a CT scan for his shunt to tell us what’s going on inside his skull.
The CT scan requires the child to be still. He was never one who liked to be swaddled as a newborn and his feelings about it did not change as his body was placed in a position to obtain the best results. The techs were wonderful in trying to keep the atmosphere calm.
I wish I would have had my camera because somehow our little Houdini managed to sneak his little hand out through at least two layers of strapping to place his hand on his cheek for comfort. Thankfully the test was completed the first time around.
After we completed the renal ultrasound to check his bladder and kidneys, we headed up to Akron Children’s Myelo Clinic. We met with the pediatrician, physical therapist, orthotist, urology nurse and nurse practitioner, genetic counselor and social worker. They were excited to hear how Jordan has been progressing and he was willing to show some of his tricks he’s picked up since his visit in February.
Two of his new tricks are taking a side step in his super boots and backing himself in a four-point stance like he’s ready to crawl.
The physical therapist wants to work on activities that encourage our peanut to build his right side strength. His right hip muscles are not as strong, causing it to wiggle a little. Building the muscles will help him as he learns to move in the next stage of getting around.
We were hoping to have visits from Dr. Hudgins from Neurosurgery and Dr. Jones from Orthopedics. These are the two doctors we look to for affirmation as to where we currently stand. From what we heard, one had an emergency and the other had another appointment scheduled at the same time.
It was very hard not to be frustrated about not getting to see these two amazing, well accomplished doctors. We know we are not the only patients in the hospital and our child was not the only one who was not seen. It’s hard to know what line to cross to assure that your child is getting the care they need.
We had expressed our concerns with the social worker and she followed up with a call the following day. As parents we are called to be our child’s advocates. As parents I think it’s fair to express our pleasures and displeasures to allow the hospital to grow and become an organization that hears the patients and their families out.
I feel that Akron Children’s beliefs are to treat every family as their own. It’s good to let others hear your suggestions. You may make a difference for the next family who is in the same boat.
Our family is thankful for having the opportunity to be a part of a great hospital and an amazing team.
Read more about Megs’ and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.