Thursday, August 8, 2013

NO SURGERY!!!!!!!!

Praise the Lord for NO SURGERY this time around!  Isaiah's blockage has been resolving with bowel rest.  Thank you for praying.  God answered.

I really appreciate all the kinds words, encouragement, and  Bible references on faith, staying strong, and God's presence even during the dark times.  In my mind, I know God is in control, but my heart struggles with His sovereignty and love.  Life is just really hard.  And, when it's your child that is hurting and you can't do anything about it, but you know that God can heal and chooses not to, it can shake your faith to the core.  I know Isaiah is here to change the landscape of the life I planned out, but the journey we are on together has been excruciating at times.  But, it is a learning process, so I am learning.

Today at about 4pm, Isaiah took a turn for the better.  He has had a significant decrease in pain and in the frequency of pain.  He has started to ask for something to eat.  Hopefully, he will be able to start on some clears tomorrow.  So far, all his test results have come back negative, except for the Rotavirus.  Not sure where he could have caught the "cold", but once again, it has done it's damage.  Unfortunately, we are reminded again that Isaiah's body cannot handle the "common cold", because it will shut down his gut.  The doctors have been wonderful, and we just love our nurses as well.  Many of the nurses come by just to visit, even when they don't have him for their shift.  Isaiah loves the attention!!!!!!!

Thank you for continuing to walk this journey with us.  We love and appreciate you all so very much.

John 3:30, "He must increase, but I must decrease."  This is my life verse I chose years ago--what a process!

Wednesday, August 7, 2013


This is what Josiah said to me last night.  I asked what he meant, and he continued after a pause with, "...this way."  It broke my heart.  What do you say to that?  How does a parent respond when we don't even know the answers?  What is the answer to the question, "Why did God create Satan and let bad things happen?"  Josiah is so sensitive and sweet that it physically hurts him when Isaiah hurts. 

Once again, our family is pulled apart.  Isaiah was rushed yesterday evening down to CHOP for severe belly pain.  He's been having increased episodes of pain and retching over the past 4 months, along with bowel slowing.  We've been back and forth with doctors and were down to a specialist on July 24th.  A barium swallow test was done. But, like every other test, it came back relatively normal.  It didn't explain any of Isaiah's increased pain, retching, nausea.  Last night's X-ray did show a blockage, and the doctors are trying to get the blockage to resolve without surgery.  Thankfully, Dr. Doolin, the surgeon who saved his life last June, was there to see and examine Isaiah. Currently, Isaiah has an NG tube to suction, his G-tube to gravity, IV fluids, and is not allowed to have anything by mouth.  He's been crying to me on the phone that he's thirsty and wants to come home.  I don't even know what to do anymore.

We were dealt another blow right before Isaiah's admittance to CHOP last Thursday.  Isaiah failed his sleep study test on July 8-9th.  Per his pulmonologist, Isaiah frequently dropped his oxygen levels into 70% while asleep, and even a few times into the 60%.  Normal is to be 92%-100%.  Now, Isaiah needs to sleep with oxygen at night and during naps.  This was really hard for me to come home and see my little guy hooked up to an oxygen tank.  I really don't know how he keeps going and keeps a smile on his face. 

I don't know what to ask for anymore.  I am beaten down, exhausted, unsure of what to do next.  Chris and I are trying to survive and trying to make our boys feel loved and safe.  Don't know how we are doing.  Don't know how to ask for God's intervention.  Don't know if He even hears anymore.