Joshua's story

Since I frequently use this blog as a place to give health updates about Joshua, I wanted to write a post explaining his medical background.  (ETA:  this blog post is just a quick summary.  To really understand what it felt like to go through all this, check out Kenny's book.)  I know many of you who are so gracious to read my blog are very familiar with all this, but in case there are some of you who know parts of the story but not all of it, or who have more recently become a friend, here's the story in brief:

Joshua was unexpectedly born with Pierre Robin Sequence (PRS), which is a craniofacial condition where the baby has an underdeveloped jaw, set-back tongue, and cleft palate.  PRS can cause significant problems with eating and breathing.  Josh was born in Reno, then life-flighted to Salt Lake City at 3 days old, where he spent a month in the NICU so that doctors could address the eating and breathing issues, give him his first surgery, and run tests to check for other problems.  When Josh was sent home, there continued to be significant issues with his eating, breathing, and hearing (he failed his first hearing tests).

During his first year and a half, Joshua received 9 surgeries to address these issues (the most major surgeries were his jaw distraction and his cleft palate repair).  He was on home oxygen for the first 12 months, and he was fully or partially tube fed for his first 4 years.  

He's seen a bunch of kinds of doctors: pediatricians, developmental pediatricians, pulmonologists, orthopedists, audiologists, otolaryngologists, neurologists, geneticists, anesthesiologists, hematologists, cardiologists, urologists, gastroenterologists, dermatologists, craniofacial / plastic surgeons, ophthalmologists, physiologists, pediatric dentists, orthodontists, emergency physicians, neonatologists, intensivists, hospitalists, speech therapists, physical therapists, occupational therapists, feeding specialists, nutritionists, and social workers.  (These are all in plural because for many of these, we have one of each type in Utah, Virginia, and Nevada.)  He had numerous tests run (for example: 9 sleep studies, 4 swallow studies, etc.).  Now he's graduated from regular checks with most of these doctors, and we can just call them as needed.

In October 2014, he got a new diagnosis of 4q deletion syndrome.  Here is the post describing what that is and what it means for his future.  For most kids with this type of chromosome disorder, the most serious medical issues occur in the first couple years due to various birth defects, and after that there is sometimes ongoing (but usually more minor) health issues and developmental delays / learning disorders.

[I will edit this last paragraph periodically to keep it up to date]:

Now, at age 10, Josh is doing great and he's past his most serious medical issues.  His breathing is (usually) no longer an issue and his hearing tests as normal.  He continues to have minor developmental delays and learning challenges so he receives special services at school and private occupational therapy.  He has an oral aversion, due to all the medical interventions and sensory processing disorder, so eating is still a challenge, but he successfully weaned from his feeding tube around his 5th birthday.  He also has some ongoing medical issues (seasonal allergies, asthma, GI issues, sinus infections), and from time to time other things pop up (including 6 additional minor surgeries since the series he had as a baby).  But overall, we are very grateful and happy about where he is now.