After spending 3 months in and out of the hospital every couple of weeks, Hyrum was born 2 weeks early on March 13, 2007.
Hyrum was diagnosed with Oculo-Auriculo-Vertebral Spectrum. In English, this means that Hyrum is non-symmetrical. He also has a Microtia/Artresia of the right ear. We feel blessed as there are many other problems that are usually pronounced with these two deformities, none of which Hyrum has had.His main issue at the time was that he was born with an imperforated anus.
Hyrum has also been diagnosed since then, with having scoliosis. At Hyrum's 2 1/2 year appointment Hyrum had been getting steadily worse in curvature. His all time record was 46% at this appointment. We were told that in 6 months we would be looking at MRI's and possibly surgery. We were encouraged to let him climb, hang on things, and be more physically active. We also prayed very hard! 6 months later at his 3 year appointment Hyrum was down at 35% curvature. And at his 3 1/2 year appointment Hyrum was a 26%. At 4 1/2 years his curvature was 21%, by 9 years old, he is down to 8%.
We started doing nightly enema's to control his bowel enough for him to wear underwear at the age of 4. Hyrum has had so many x-rays that I think he glows in the dark. He does not fight us, in fact he enjoys enema's thanks to an iPad that was gifted to us. He knows his alphabet letters and sounds, and is working on reading. He also loves watching Asian YouTube of Thomas the Train.
Hyrum has a zest for life. It takes a lot for him to feel pain, he loves to laugh. He has many funny quotes that I have threaded throughout the blog to keep them somewhere safe.
August 2014, Hyrum had an Appendicostomy. This allows us to do flushes through his belly instead of with enema's. This has given him a lot more control of his bowel movements. We have been very fortunate that he doesn't fight us over getting them done. Sometimes, he doesn't want to be bothered by them as he is doing something more fun, but he doesn't fight us off.Hyrum had his 20th surgery Sept 23, 2015 to have Constructive surgery on his right ear lobe and canal. He has loved having his "new ear" and showing it to other people.
Hyrum loves to laugh and make others laugh. When taking pictures of this young man, he can not help but make a face. Hyrum loves to learn. He has taught us what a water engineer is and how to water our garden. He loves to be outside and wandering the fields. He has such a great imagination.
I get asked many times to list Hyrum's surgeries and hospital stays. I thought it would be a great idea to create a list, mostly to make it easier for me to refer to.
March 14, 2007, Construction of Colostomy and stoma
March 16, 2007, Lung Collapse, chest tube
March 23, 2007, Colostomy repair--Found colostomy and stoma were in the wrong "holes"
March 2007 Went home
April 15, 2007, Prolapse repair
April 16, 2007, Colostomy repair
April 16, 2007 (yes two in one day) Colostomy Repair #2
April 18, 2007, Hernia Repair
April 2007 Went Home
Aug/Sept 2007 Conscious sedation for viewing intestine attachment
Sept. 24, 2007, Created bum hole
Sept 28, 2007, Cather complication repair
Sept 2007 Went home
Oct 1, 2007, Bladder Surgery
Oct 22, 2007, Conscious Sedation for Dilating purposes
Feb 12, 2008, Conscious sedated X-rays for urethra
March 21, 2008, Tonsils and adenoids out, skin tag removal, tubes in ear, bladder tattoo
April 20, 2008 Rota Virus Hospital stay for 1 week
May 2, 2008, Take down surgery
March 2, 2012 Fecal Impaction
August 6, 2014 Appendicostomy
Sept 24, 2015 CAM (Ear Lobe & Canal)
