Micah had his bone scan yesterday and it came out wonderfully!!!! The nurse got the IV in on the second try!! Praise the Lord! And the results came back showing no cancer in his bones!!! Praise the Lord!!!!! God is good! So for now we are in the clear until we have another CT scan in August.
We have been awaiting the results of Micah's gene testing for CCHS. Well we received these results this morning. Dr S called and let us know that 90% of people with CCHS have a gene mutation and Micah does not have this gene mutation...prayer of thanks!!!! The confusing part is that we still have no idea what Micah has. Dr S says he still thinks that Micah has some for of a disease like CCHS but he doesn't know what. Micah is still requiring supplemental o2 while sleeping. He has a sleep study on Tuesday night so hopefully this will bring answers. I pray for answers! I think the hardest part about all of this is not knowing! If I knew what was going on with Micah I could deal with it, learn to live with it, but right now we are in limbo going to test after test. So for now our trip to Chicago will not be happening (which is fine by me).
I hope to have more answers after his sleep study on Tuesday night.
Until then...please continue to pray for Micah and for his recovery...i wish this journey of tests and confusion was ending but it doesn't look like it will anytime soon.
I am exhausted. Worn out...confused and sad. I have this child who appears perfectly healthy on the outside, who meets all of the developmental milestones, who is growing amazingly well, yet is still sick and in need of extra o2. I am ready to know what is going on, ready to deal with whatever is thrown my way, ready to live a more carefree life with my children...but until then I guess i'll just be exhausted...just still moving forward...cause that's what a mom does!