"We wait for peace, to no avail; for a time of healing, but terror comes instead." Jeremiah 14:19

From the title, maybe you can guess how our appointment went today. I was hoping against hope that Tucker did not have Mitochondrial disorder. After waiting for over an hour to see the doctor, she walked in and got Tucker his very own Mito Mike...a turtle they give to kids with Mitochondrial Disorder. Its shirt says "slow and steady wins the race", which if any of you know my mother, that comes out of her mouth every 3rd sentence. So anyways.... Tucker's lumbar puncture came back normal, which is great news in and of itself, but a lumbar puncture doesn't test for mito-it tests for other things, and can indicate the severity of mito. The muscle biopsy is what they look at for mito. So it is about a 30 minute conversation (which I will reproduce here when I'm up to it, graphics included or your head will spin), but the basic point is Tucker has mitochondrial disorder. The mitochondrioa throughout his body do not produce enough energy to make his body run properly, and in Tucker's case it manifests in neurologic symptoms (developmental delay, speech problems, autistic features, microcephaly). Tucker's body produces double the amount of mitochondria it needs to get the same amount of work done. Over time, a normal person's mitochondria copies itself to other cells so that the body can grow and live as old cells die. Well as Tucker's mito copies itself, there is some kind of mistake going on. Theoretically, he was born with normal mito in his body, but over time, the mito gets worse and worse as the copying mistake repeats itself. This is called a Mitochondrial Depletion syndrome. There are many of these syndromes, so the Dr took more blood and urine today to try to isolate the actual gene so that she can give us a more acurate prognosis. Bottom line...Tucker has Mito, and it will get worse as time goes on. Some mito patients die before their first birthday, many die at a very old age....the problem as a parent is the "wait and see" game, because you never know which organ will be affected next or how severely. The Dr is pretty certain that Tucker's lung issues were caused only by prematurity and not mito, because if it was mito then his lungs wouldn't have gotten better. All mito patients are monitored closely for problems with their heart, liver, and kidneys because these are typically problem areas. We have been blessed with the fact that all of these seem fine on Tucker...it is just his neurologic symptoms that are very concerning. Bad part-it could all change at any time. No peace of mind on the way. There is also a 25% chance that this could occur in future children...just throwing that out there, as that of course is a big concern of ours. I will update much more in detail in the near future. But right now Chris and my heads are still spinning...I have to get it out there tonight, but it is not nearly as detailed as it needs to be, and I'm sure you will all have questions that I left unanswered. So many people have emailed, texted, called, and facebooked us. Thank you all so much for caring about our family! We will need that support even more in the future, trust me.