Approximately two months ago, we received a call from Price's neurologist here at TCH. I was expecting the call, as he had an MRI a few days prior and we were awaiting the results. The neurologist started using words like atrophy and cerebellum, and problems with myelin, and my heart just sank. We weren't expecting those results. I just remember him ending the conversation with a group of diseases he wanted to test Price for and his last words to me, "I'm so sorry." I hung up the phone and looked at Nathan, who could read my face so clearly. The tears started to flow as I explained what the neurologist had told me over the phone. I knew the group of diseases they wanted to test Price for and they were complex, life-limiting, degenerative diseases. This is the first time I thought to myself that my child could die from whatever is going on inside that precious body of his. I was shocked. Nathan fought back tears as we talked about how we know Price has something and that this doesn't change anything about who he is. I remember Nathan just saying, "I love him so much." I texted my mom to see if Ellery could spend the night at their house and she quickly texted back "Dad is on his way".
As Nathan was putting Price to bed, I went back into my room and started sobbing. I called my mom to explain what was going on and couldn't catch my breath. I remember just saying, "Mom...mom...not Price, no, not our Price." (My poor mom has been on the receiving end of so many of these conversations and bless her heart, she just listens and cries with me.) After I got off the phone, Nathan came and put his hand on my shoulder and just started praying silently for me. I was never scared, or panicked, just so unbelievably sad, shocked, and heartbroken. We had always seen Price getting better, doing more...and so to think that his brain was getting worse...well, that had never crossed our minds. I remember just saying to Nathan, "I need the Lord to be near right now, so near to me."
(As a side note, the Lord definitely was very near. From new flowers in my flower pot that I did not plant nor ask for to a message from a friend who had no idea what was going on inside our home...the Lord let me know he was very present.)
We went to bed and awoke to the Lord's new mercies. We went to TCH and had Price's blood drawn for the hundredth time and waited. And waited. Our neurologist called me on Christmas Eve with the results that the testing was negative for an MPS storage disease.
This is kind of the background as to why we went to Duke. Because if Price DOES have something degenerative, we want to know what it is and seek any form of available treatment. So far, our testing from Duke has all been normal except for a slightly abnormal organic acid urine test. We are repeating that urine test and should have the results soon. He has had this same test before at TCH when he was about a year old, and it was normal. The geneticist said that the results can differ based on so many factors, such as diet, environment, etc. If the repeat test comes back with the same elevations, we are most likely headed down the metabolic/mitochondrial dysfunction road. Diagnosing these diseases is so hard as there are so many and not one child has the same symptoms. It's all so gray. We also still have some pending genetic tests which if positive, would send us in a completely different direction.
Price's MRI, however, from Duke came back with no significant findings. Having had a previous MRI at TCH two months ago, this was shocking news. How in the world could one MRI indicate a possible degenerative disease and the next two months later indicate nothing? Now, we don't know if they compared the two MRI's and don't have the exact radiologist report, but the summary just reads, "No significant findings."
I have a hard time reconciling all of this. Price has not changed, but yet it looks as if his MRI has. Ellery brought home a Bible thought from school (they have these each week and it's just a piece of paper with a verse or thought on it). Some I read and some I don't (good mom, huh?), but last weeks thought spoke volumes to me.
I immediately got down on my knees and thanked the Lord. Thanked the Lord for Price and for what He's doing in his life. Whatever this MRI means or doesn't mean, or whatever these test results indicate....He is at work...and it's very obvious.