As March is Kidney Awareness Month, we wanted to make the focus of blogs this month surrounding all the aspects of life Jones and his parents, Rylie and Justin, go through on a daily basis. There are so many things that are affected by kidney disease that may not be specifically dialysis related.
Jones recently met a huge developmental milestone, he is now able to sit for short periods of time unassisted! Because Jones was born 8 weeks early and spent 4 months in the NICU, Rylie and Justin knew Jones would reach milestones later than other children, and have to work a bit harder. Jones also has a condition called Prune Belly Syndrome, which is characterized by weakened abdominal muscles, making activities such as sitting, crawling, and standing more difficult.
Jones learning to sit is such an amazing feat due to his Prune Belly Syndrome, his parents are in awe because they see just how hard he works to do things to make him more independent! Rylie and Justin take Jones to Physical Therapy, Occupational Therapy, and Speech Therapy each multiple times a month to work on his motor development as well as feeding skills.
Rylie also happens to be a Physical Therapist herself, though she works with adults and not children, so every day is therapy at home! Little Jones is always on the move as he has begun army crawling and loves trying to climb into his dog siblings’ beds!
The reality of having a child on dialysis is that Rylie and Justin are so in tune with his medical status, they are able to very quickly recognize when something strays from Jones’ “normal”. They are currently investigating as to why Jones all of a sudden began to have tachycardia, or a fast heart rate. Jones has never had to see a cardiologist, but they recently took him to be evaluated and based on the information provided by tests/labs done in office it is believed the tachycardia is likely due to his being on dialysis. Further testing has been done and Jones’ parents are eagerly awaiting the results.
Please continue to share Jones’s story as Rylie, Justin, and all those that love Jones strive to get him closer to receiving the lifesaving kidney he desperately needs!
Happy Kidney Awareness Month!