When we got home from the hospital we had 10 or so messages from Kaiser trying to set up appointments for the numerous tests Presley needed to have done. Over the next few weeks we had an MRI done, a kidney ultrasound, an eye exam, an echo, and another EEG. All of these tests needed to be done to determine the severity of Presley's Tuberous Sclerosis, our neurologist expected to see numerous tubers (benign tumors) on one or all of these organs.
The MRI was the most stressful test for us since Presley had to go under anesthesia and of course because we were about to find out how many tubers our daughter had on her brain. After a long few days full of tears and worry we finally heard back from the Dr., Presley's MRI came back completely normal, not a single tuber!!! The rest of the week was filled with even more good news when her heart, kidneys, and eyes also showed no tubers. The doctor even decided to take back her original diagnosis of TS until proven otherwise.
For a few days I was happy again. I thought maybe this was all a mistake, maybe we were supposed to learn something from all of this. I thought maybe god just wanted to give us some kind of wake up call, his way of telling us to appreciate each other more, not sweat the small stuff, stop being so petty and realize how lucky we really were. What we thought were real problems just weeks ago meant absolutely nothing in comparison to what we were now facing.
Our excitement over the results quickly wore off when we realized even if Presley didn't have TS she was still having infantile spasms (the name of the seizures she has) and the prognosis for Infantile Spasms on their own wasn't good. Kids with Infantile Spasms (IS) had many of the same risks of kids with TS including developmental delays and mental retardation.
After feeling so hopeful for a few days we were right back to where we started. We decided to stay off the internet and just wait until our next meeting with the neurologist in a few days to figure out where we were supposed to go from here. Until then we just had to try our best to be strong for Peyton, Presley and each other.
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