Ketone Utilization Disorder

Has anyone every heard of a Ketone Utilization disorder??  That's what they are calling Gracie's ailment.  Based on the testing they have done, which is almost all of them, they say that Gracie appears to be having trouble metabolizing ketones in a normal fashion causing recurrent episodes of ketosis.  They think she may be having trouble breaking down protein to provide her body with energy.  Buildup of ketones leads to cycles of stomach pain, metabolic acidosis, and vomiting.  They think that a number of things may bring on these attacks, but one of them is high protein intake.  It's ironic, because she craves things that are high in protien almost all the time. 

They don't really have a name for this because it's extremely rare and they haven't seen it before.  All they can really tell us is what appears to be happening to her.  They feel like she could grow out of it which is the good news.  But it's still hard to continue to manage when it pretty much shuts down our lives for about 8 days at a time.  Poor thing.

This last year and 1/2 has been very difficult for our family.  We did not know what we were getting when we adopted Gracie.  But God has used it in amazing ways to strengthen our faith in Him.  Don't get me wrong, there were definately dark times when I questioned God and His ways and couldn't understand why He would allow this into our lives.  I have been so angry at times with Him for allowing this to happen to us.  Afterall, He called us to adopt this little girl.  He made it very clear to our whole family that this was His will for us.  So WHY would He leave us "hanging" like this!  Where was HE!!??

I think that as I've wrestled with God this past year, He is beginning to give me a new perspective and a deeper understanding of his love for me. But that new perspective has not been lightly gained.  I've questioned Him many many times, asking, no demanding answers ~ and it has just been silent.  Has God abandoned me?  No, I think it's my image of God that has abandoned me ~ like Margaret Manning put it so eloquently.  "God has not promised to make our lives go as we plan. But instead, God promises to give us the necessary new perspective to see his goodness and grace in the midst of our abandoned expectations."  

Gracie still continues to get sick.  And we continue to care for her.  I'm not saying that it has gotten easy, but it has in a lot of ways gotten easier.  Our attitudes and hearts have changed in a lot of ways.  We haven't "arrived" ~ in fact this last cycle was probably one of the hardest ones for me because she got sick on our family vacation and that was a huge bummer for everyone.  But it sure makes you thankful for the days that she is healthy and happy.  I think we enjoy her laugh and spit fire attitude much more because it means she feelin' good!   But God is working in the midst of it all and that is one thing I do know for sure!

I think I'm really starting to believe this...  "As for you, you meant evil against me but God meant it for good in order to bring about this present result..." (Genesis 50:20).