This journey we're on has given me some really great highs but also some really terrible lows. And everything in between.
After our neurosurgeon visit I felt like I was on cloud 9. I was so excited that we were seemingly so close to an answer. But since then I've just been feeling more and more discouraged and so exhausted. Our neurosurgeon appointment was on a Wednesday; we were told to expect a call from the hospital to set up an appointment for the second MRI sometime Thursday. By Friday afternoon I hadn't heard anything so I called the neurosurgeon's office. She did some digging and apparently the hospital the order was sent to won't do MRIs on children as young as Cooper. So she forwarded the order to a different hospital and told me to expect a call Monday. It's currently Wednesday evening, one week after our appointment with the neurosurgeon and we still don't have the MRI scheduled! I had to call the second hospital yesterday and they had the order for everything but his lumbar with contrast. Turns out, that was done initially. There was also never any mention of him needing to be sedated on the new MRI order. Obviously a 15 month old can't lay still in a tube for an hour while being scanned so the sedation is absolutely necessary. That required another phone call to the neurosurgeon to have that added to the order. After that I was told I should hear back today about scheduling. Still hasn't happened. So this evening I called the office and put in a request to have the order sent to the hospital that did his original MRI. They seemed to get us scheduled right away and we didn't have any issues. So fingers crossed we get it scheduled soon!
I also had to call the neurologist's office to inquire about why I still hadn't heard about any of his lab results after almost three weeks. The lady I spoke with told me there was still one test pending but all the other tests came back normal. WHY DID NOBODY CALL ME TO TELL ME THAT?? I've been worried sick about these blood tests and nobody thought to call just to let us know everything was normal?! They were testing for some pretty scary things so I just assumed I'd get a call letting me know I could stop worrying about those things.
I've been so frustrated with just about every medical professional I've dealt with lately. I understand everybody is human and things happen, people make mistakes and things fall through the cracks. But it just seems like we've experienced quite a few of these human errors in the last few weeks and I'm just ready for something to go our way.
We did get our urologist appointment scheduled but haven't heard anything from neuromuscular. That's another phone call that needs made.
And at our weekly physical therapy appointment on Tuesday our therapist (who has been amazing and so, so helpful with everything) suggested putting our therapy on hold until we figure out what is going on. She said there isn't really any more she can do for him at this point and she doesn't want to waste our time or money making us come in every week when we aren't really getting anywhere currently. So we're taking a break for the next month or so and hoping that by then we have a diagnosis or a better idea of what is going on inside our little guy's body.
I feel like I've done a pretty good job at compartmentalizing everything and not getting overly emotional about what is happening. But I'm starting to get worn down. My optimism is dropping each day. I'm starting to consider a future where our son can't physically do anything other than sit. It's completely consuming me and becoming all I think about.
Some days I'm hopeful, others I'm terrified. It's a rollercoaster.
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