Josiah's Journey  

I am going to try and summarize the past 4 almost 5 years of Josiah's life in this brief blog. Josiah was born as any other child would health and happy. My family and I took Josiah home after 3 days of being in the hospital with every dream that a mother has for there child and excited that I not only had a beautiful daughter but I also had my little man, my son, at the time little did I know that within the first year of Josiah's life that all of our lives would be turned upside down. 

Josiah in the first few months of life had feeding intolerances and had trouble putting on weight, so were sent to see a gastroenterologist. By the time that Josiah was 6 months of age he had his first surgery and had been diagnosed with stiff skin syndrome. Having the problem fixed as far as helping Josiah to eat and gain weight and the diagnosis of stiff skin, we thought we could move forward and help Josiah thrive. Little did we know in just a few short months that Josiah's diagnosis would change for the worse and I would be faced with a parents worst nightmare letting go off there child after such a long and hard fight.

 Josiah by the age of 1 was diagnosed with a disease called Hutchinson Guilford Progeria Syndrome(also known as premature aging disease) which is extremely rare (1 in every 8-10 million) and there only being 40 cases worldwide and a little over 10 cases in the states. When I got this diagnosis and knowing that the prognosis was not good for Josiah the only heart warming thing at that time under the circumstances was I knew he was in the best of care.

   By the time Josiah was 15 months of age he had to undergo emergency abdominal surgery which came out to be a somewhat good thing if you think that emergency surgery can be such a thing. While the surgeon was going in to correct what he thought was wrong with Josiah, he was taken by surprise at what he was to find, the whole reason for Josiah's feeding problems. After completing surgery and correcting the problem we knew that Josiah would stay in PICU (Pediatric Intensive Care Unit) for a day or 2 until some of the swelling to go down so they could close up his belly which due to swelling and his underline condition was unable to and also to let his body rest as he was weak with not being able to gain weight and have proper nutrition. After a few days of being in the PICU they took Josiah back to the OR to close up his belly which at the time the found that Josiah had the worst kind of infection you can have and they couldn't close his belly and without being able to do to help make Josiah get better there was nothing more they could do. We had a meeting with the doctors, nurses, etc. and with days passing and Josiah getting worse by the day the doctors had to tell me there was nothing else that they could do for him.

As Josiah lay there hooked up to wires and tubes I said this can't be happening, I had just come to grips(as much as a parent can) that I was going to lose Josiah at an early age,  but within a matter of months it was staring me right in the face. The nurses and child life specialists were wonderful as they left me stay in the room with Josiah and bring his sister in to see her brother who was trying to at the time understand what was going on with her Bubby (nickname his sister Daisha gave Josiah when he was born and stuck). The day came when I decided to take Josiah off of life support and leave him in God's hands. The doctors were hopeful that Josiah would survive for us to say our goodbyes and maybe even live a few hours but no one was for sure what was going to happen. Within an hour Josiah was transferred to CH2 in the Janet Weis Children's Hospital to watch and wait. A few hours turned into a few days but there was still no sign of healing or decrease in swelling. Within about 2 weeks Josiah was released to go home on palliative care with the same outcome it was just taking longer then they thought. 

Within a period of 2 months of going home Josiah had started to heal from the inside out and was completely closed and healed. Josiah is a fighter as many kids are and he is just 1 example of where CMN dollars go. It is an honor to share Josiah's story and represent the state as well as Geisinger's Janet Weis Children's Hospital. 

Josiah is still fighting the battle with Progeria but anyone who knows him will tell you that he enjoys life everyday and lives it to the fullest. I hope that you will stop by and check out Josiah's Journey blog as we continue this adventure with my son, Josiah.

Today we got the chance to go to the Lewisburg Walmart for CMN. Bonnie Tharp talked for a little thanking the employees of the Lewisburg Walmart  for all there hard work. We also got a chance to see Drew and Ali from 94KX which Josiah and Daisha love to see. We had a great time and they gave Josiah a cake, a Star Wars one at that and gave him and his sister some toys which were very much appreciated by them both. The highlight was when the manager walked in with a name tag and said that he was the manager for the time he was in the store, needless to say he walked around the rest of the day saying he was the boss, which is he already knows is the truth. Overall, it was a really great time and we had the opportunity to meet some really great people and tell Josiah's story. 

We had the opportunity to go and visit St. Clair Walmart which is close to home because we shop there. We had an awesome time and Josiah as well as Daisha got a ton of new toys. We are going to have to add on another room just for their stuff...lol  

Josiah had fun and he loves to eat the cakes that the Walmarts make for him and he also in heaven as his pappy was able to join us on this trip so overall it was a wonderful day. We always find it amazing how much effort the employees put into raising money for CMN and knowing that money goes not only to kids they don't know but also those that they do which they say all the hard work is rewarding. Josiah had a really great day.

 .