We saw one of our favorite doctors today at MUSC. This is Caden’s ENT (Ear Nose & Throat) doctor. We talked about swallowing mostly. We are still facing a recommendation of a myotomy which is a surgical procedure to cut the muscle tissue of the upper esophageal sphincter (UES). The ENT says that this physical obstruction must be taken care of before Caden can even begin to enter a therapeutic treatment for swallowing. We still plan to visit the multi-discipline clinic in Cincinnati but that will not happen for a couple of months. in the meantime the tube feeds to deliver 100% of Caden’s nourishment and hydration will continue. Sherry’s diligence in tracking Caden’s growth and increasing feeds as necessary have worked great because Caden is growing like your average 4 1/2 year old little boy and he is as happy as they come.
This ENT visit was great timing since Caden has been tugging at his ear and signing hurt. We have been treating him with pain relievers and antibiotic ear drops, but that has not done the trick. That said we got a strong oral (g-tube delivered) antibiotic.
We also ran into one of Caden’s original speech therapists from when he was a baby. She performed most of Caden’s early swallow studies at MUSC. She is retired now but she enjoyed seeing Caden and his brothers. The boys enjoyed the short visit with her too. She is a very sweet lady who put a lot of work into Caden’s development and boosted our confidence in training Caden.
The other big thing of the week for Caden is that we changed out his g0tube button tonight. He has been telling us once in a while that the button hurt. The little balloon that held the old tube in was a little low on water, but it was intact and seems fine. We changed it anyway and even though Caden screamed during the process he was very happy with the new button. We will be taking a road trip soon and wanted to have a fairly fresh button in so we did not get caught in another town needing to replace a busted g-tube button.
In other big news, Riley lost is first tooth this past week only a couple of days after mastering the bicycle without his training wheels. JJ will be 23 months old this Friday and he is still growing at what seems four times the rate of Riley or Caden. They are going to all look like triplets within a year or so.