We have now been here at CHOP for almost 5 weeks. It has been a long arduous process. Isaiah continues to improve daily, though it has been infinitesimally slow. We will still be here another 6-8 weeks, unless he makes some dramatic change for the better.
Thankfully, he has stopped dumping out the ostomy and has been able to start back on real food. He is not eating much, but we are hoping the more he eats, the more the doctors can back off the TPN/Lipids. The TPN/Lipids are still affecting his liver negatively. At one point, his liver function tests started to decrease (which is good), but now the levels are starting to go back up again (which is bad). The docs are not sure why they are going up and don't seem very concerned, but I am because Isaiah has never had problems before being on TPN/Lipids. So, for some unknown reason his liver is not filtrating correctly. Please pray that God protects Isaiah's liver and the rest of his little body.
1. Isaiah is gaining weight.
2. His outbursts and negative/abusive behavior has decreased significantly. I think it has helped to have breaks from us on the weekends. Thank you to those who have been spending days/nights with Isaiah to allow us time away from the hospital.
3. Josiah has been able to stay down here with us, and we have found some fun and free activities to do together.
4. The Lord has opened up doors for us to share our faith in Christ. Because we struggle with this path of disability, and are not ashamed to say it is difficult and we struggle with God's sovereignty, people feel free to talk to us and share their doubts about God. Struggling together gives us a freedom we would have never experienced if Isaiah were not here.
5. The floors in the boy's rooms at home have been replaced. A HUGE THANK YOU to Charles, Jake, Dan, Josh, Chris, Glenn for helping us out with this.
1. For Isaiah's liver and the rest of his body to be protected from the TPN/Lipids and medications/therapies.
2. For the following children: they are either fighting for their lives or are seriously physically compromised from disabilities: Grace (4yrs. old from Florida), Hugo (preemie, born at 24 weeks), Marie (newborn from Egypt), Jenny (newborn from Egypt), Fatima (newborn from New Jersey), and Abdul (8 month old from NJ). We have seen prayer work and the parents would greatly appreciate your support.
Thank you again for continuing to pray and support us.