DON'T COME BACK! JUST STAY AWAY! This has been our prayer for Isaiah lately. I know I haven't written in a while, and it's because we've been very overwhelmed and busy with many visits to CHOP and multiple tests for Isaiah over the past few months. Isaiah has been in chronic pain for the past couple of years, with it increasing significantly since his strangulated bowel last June and the car accident last October. We've been to multiple doctors, had multiple tests completed, and had a ton of blood work drawn. So far, nothing has shown the doctors clearly what is causing Isaiah's pain or what can be done to decrease it. Isaiah has been unable to tolerate his tube feeds for the past 4 months, and has daily retching and vomiting episodes. It is heart-wrenching and exhausting to see our vivacious little boy in so much pain. He often has to stop playing to lay down or he asks to go to bed early just to try to sleep through the pain.
Tomorrow, we head down to CHOP for a week long of tests. The GI specialists are going to try to find out what is causing all of Isaiah's abdominal discomfort, and hopefully find a way to alleviate it. Please pray that someone discovers the cause of Isaiah's abdominal pain. Chris and I just don't know what to do anymore. Our hearts are breaking for our son.
On the upside, Isaiah is really enjoying school and has made friends quickly, especially with the girls! It's rather entertaining to watch him interact with his peers. His teachers have been incredible with him, and we have been grateful for the support we have received from them.
Funny story--Isaiah's teacher noticed that he was often playing with the girls in the kitchen and wasn't playing with legos like the other little boys. We assumed he wasn't playing with legos because of his limb anomalies and difficulties with fine motor skills. So, we worked with Isaiah's occupational therapist and with legos and he did phenomenal! He never ceases to amaze us! His OT then asked Isaiah if he would play with the boys at school the next day. He responded with a straight face, "NO! I need my lady time!" We just busted out laughing. We have no idea where "lady time" came from, but it was great for a few laughs!
Josiah has been doing much better since we started counseling with him. He was experiencing significant anxiety and nightmares because of all the separation from us over the past 4 years, the 2 car accidents last year, and from almost losing Isaiah. We've worked on memorizing verses and equipping him with tools to express his fears. He also has a fantastic teacher that has been very patient and tentative to his needs.
At this point, we really don't know what the future holds for any of us. We just continue to take it one day at a time. We just really hope and pray that God decides to intervene soon and choose to take away Isaiah's pain.