Dax hasn’t tolerated feedings very well on our trip and gave his mom and dad a scare, so we canceled our stay in South Dakota and drove straight to Kansas City. Tyson drove 23 hours in a 27 hour time frame (we stayed in close contact with our doctor on our way back home). WeContinue reading “We skipped Mt. Rushmore”
Tag Archives: Pontocerebellar Hypoplasia
PCH Type 8.
We were fortunate enough to know within days of Dax being born, that he had Pontocerebellar Hypoplasia (PCH), but it all depended on the genetic results to diagnose his type. There have been approximately 115 cases world-wide with PCH and there are a handful of genes that are “commonly” seen as a reason for PCH.Continue reading “PCH Type 8.”
G-tube surgery, February 19.
The only thing holding us back from going home was the G-tube surgery. Dax was still thriving on his own and handling his feedings well. The surgery was done laparoscopically and the actual procedure only took approximately 25 minutes. He handled the surgery like the champ he is and recovered quickly. We completed training andContinue reading “G-tube surgery, February 19.”
Waiting for more answers.
The 24 hour brain monitoring ruled out the seizures. The doctors then recommended that we do an MRI and meet with a genetic specialist to discuss what was going on (Dax’s results for the Trisomy’s came back negative). We waited another day for the neurologist to read the results and to speak with the geneticist.Continue reading “Waiting for more answers.”
The Story of Dax Wilder 