Oct 31, 2017 Latest post:
Mar 17, 2019
Josiah has an extremely complicated medical history. Prior to birth he wasn't growing well in the womb so he & his twin brother, Brandon, were delivered prematurely in order to save Josiah's life. At birth Josiah was 2# 6oz & Brandon was 5# 4oz. Brandon was normal size for their gestational age of 33 1/2 weeks but Josiah was IUGR (Intra-Uterine Growth Retardation, aka Small For Gestational Age). He was considered Very Low Birth Weight & qualified for SSI immediately because he was less than 1200 grams.
Josiah also has Congenital Heart Defects & ended up having Open Heart Surgery before ever coming home from the hospital as an infant, at 2 months of age. That First Heart Surgery was to repair a VSD (Ventricular Septal Defect--hole between the two lower heart chambers) using a Goretex Patch. Later in May 2000 Josiah had his Second Open Heart Surgery to remove a Sub-Aortic Stenosis (thickening & partial closure of the Aortic Valve). They also removed some heart tissue in a Myomectomy during that procedure. Josiah has a Bi-Cuspid Aortic Valve rather than the typical Tri-Cuspid Valve--his valve has 2 flaps rather than the normal 3 flaps. Because of this malformation, & other heart issues, Josiah will be monitored by Pediatric Cardiology throughout his life as they manage his Cardiovascular needs.
Josiah is also monitored by Pediatric Urology as he was born with some abnormalities in his urological system. He had 3 stages of repair during his childhood and a recent 4th stage of repair earlier in 2017. After 6 months have passed since this most recent surgery then he will be re-evaluated for another potential surgical stage of repair.
Josiah had numerous challenges in early life that impacted his senses. He had Visual & Auditory Processing Problems, Sensory Integration Dysfunction, periodic Hypo &/or Hyper-Sensitive Skin/Touch. He had Proprioceptive & Vestibular Struggles. He had Gross & Fine Motor Weaknesses. He has been given many "labels" over the years to describe many of these needs. Some of them fall under the domain of Autism Spectrum. He was called PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified, aka "Atypical Autism") when he was a preschooler. His Autism related needs have presented challenges throughout his life in communication, socialization, education, & perception. He is considered to be High-Functioning Autistic...
Josiah had many issues with his inner ears in early childhood & was diagnosed with Eustachian Tube Dysfunction. He had numerous surgical procedures to place Myringotomy Tubes in his ears to facilitate pressure equalization & reduce fluid build up. Prior to getting tubes he had Chronic Otitis Media, persistent ear infections, & significant balance issues. As a toddler he couldn't walk without holding on to something prior to getting his first set of tubes. He had intermittent hearing loss associated with the need to get new ear tubes and when he was in a diminished hearing state his autistic behavioral challenges were also seemingly diminished, likely due to a reduction of sensory overload.
Josiah contracted RSV (Respiratory Synschial Virus) twice in the first year of life. Both instances required hospitalization and ambulance rides to U of M Ann Arbor. The first ambulance ride was from his then home in Gaylord to U of M & was just weeks after his first heart surgery. The second time was during a visit to his grandparents' house in Dearborn in the winter. We took Josiah to the local hospital, Oakwood Dearborn, but they sent him via ambulance to Ann Arbor for treatment & hospitalization. That route likely retraced the same pathway trod when he was 2 months old & went from Oakwood to Mott by ambulance, with an NICU nurse along for the ride, for that First Open Heart Surgery--& all his subsequent surgeries, currently totaling 18!
One fallout from RSV was the development of Asthma. When he was younger we would regularly use a Nebulizer to give Albuterol treatments to Josiah. Now he (rarely) uses an inhaler if he needs some help. His Asthma is usually only an issue during intense exercise &/or colder weather. He is supposed to use a CPAP (Continuous Positive Air Pressure) Machine at night for Sleep Disorders, but he's only marginally compliant with that. When he was still under pediatric care he would see a Sleep Team that included a Neurologist & a Behavioral Pediatrician but things are different in the Adult Sleep Clinic.
Josiah has faced many medical "Goliaths". He was diagnosed with a Brain Tumor & Liver Masses/Tumors nearly simultaneously at the end of 2009. This resulted in Brain Surgery in 2010 to remove the Brain Tumor (an Adenoma) through his nose (a Transphenoidal Resection of a Pituitary Adenoma). Because that Tumor was nearly enveloping his Pituitary Gland & pressing against his Optic Nerve he had a workup by a Pediatric Neurological Ophthalmologist to ensure that surgery was possible without damaging his eyesight. He later had eye surgery from the same Eye Doctor/Surgeon when it was discovered that Josiah had a form of double vision (V-Pattern Esotrophia, I think). That was the first surgery Josiah experienced where he was the decision maker as to whether surgery would proceed. He also elected to have the most recent Urological Repair as an "independent" adult.
The Liver situation was less straightforward than the Brain Tumor was but it ultimately lead to the need for a Liver Transplant. Josiah was Transplanted on 7-30-13. As a Transplant recipient he will be followed by Liver Transplant Doctors for the rest of his life, at least every 6 months. He had a condition called Congenital Absence of the Portal Vein--the main blood vessel that arises from the intestines & should feed into the liver went directly from his intestines into one of the chambers of his heart. That atypical circulation scenario apparently allowed his various organs to build up a level of toxicity that has now been seemingly flushed from his system. This meant from a practical standpoint that Josiah went through an accelerated maturation process post-Transplant (though he still has Developmental Delays/Disabilities). He has made significant gains in socialization & communication since Transplant.
Many of Josiah's medical challenges have been met with Grace & Strength & Much Favor. This is likely in large part due to the significant prayer covering he has been under from so many people, even from the womb. Josiah's name means "God Will Heal & Protect" & the Lord's Hand of protection & healing has been repeatedly evident in Josiah's very complex yet overall joyous & worshipful life!
We will now post updates to his situation & some prayer needs & extended family happenings as we used to do at CarePages now at CaringBridge. Please come along for the next phase of the adventure...We value your prayers, support, insight, & encouragement!
Thank you so much for your care & concern & prayerful support of Josiah (& our family)...God Bless You!!!