Ups and downs...

Anytime I feel like I've started to get comfortable with where we are at with Elliot, it seems like the ground is pulled out from beneath me.

Last week we saw his Endocrinologist at Vanderbilt and thankfully we have graduated from needing regular follow ups with him. Elliot hasn't had any endocrine concerns yet, despite this commonly being associated with his condition. His Endocrinologist will keep him as a patient and we can now just follow up IF a need presents.

Last Friday I received a reminder about the M-CM/MCAP network photo submissions for the 2025 calendar. I was interested and took a look at the link. You could view previous years calendar's through this link and I opened the 2024 calendar. The calendar showcases pictures of kids with MCAP and lists their hometown. To my surprise, I found a picture of a young girl who lives locally. I couldn't believe it, as rare as MCAP is and there are two kids here that have it. I was able to find her mother through the Facebook support group and reached out. She even works in healthcare like I do.

I also reached out to his neurosurgeon's office last week requesting an appointment, the earliest they had available was November 18th. After waiting a couple days and contemplating that he'd be waiting nearly 3 months for us to go over his MRI which had clear concerns I emailed his neurosurgeon's office to request an earlier appointment or to receive a call from his doctor. They called this Saturday and scheduled us for early yesterday morning. After his last appointment and reviewing his MRI results, I had kind of come to the conclusion that Elliot was going to have to have a spinal surgery. I had assumed we were going to talk about moving forward with the posterior fossa decompression surgery we had discussed in his previous appointment. However, when his neurosurgeon reviewed his MRI he found that Elliot's chiari malformation had actually improved but that he suffered from a tethered spinal cord due to an overly fibrous filum terminale. He believes the tethered cord may actually be the cause of Elliot's two syrinxes. Because the syrinx he has from T5-L4 is significant in size and is causing spinal cord atrophy, he recommended that we move forward with a tethered cord release procedure and we have it scheduled in October.

My level of acceptance for Elliot's health waxes/wanes often. I'm thankful that we aren't needing a surgery on the spine at the C1 level, which is much riskier. But I'm also frustrated that he has to go through so much. I worry that all of his early memories will be of pain and hospitals. I also just feel sad that mine and Jack's experience of parenthood is so stressful- we worry if we are making the right decisions for him, we worry if we are doing too much or not enough, we stress about the finances related to his health.

I'm frustrated that October is once again going to feel traumatic, we are just a month shy of it being a year from when they told us Elliot had a tumor. I don't want the holidays clouded by stress, but I know I can't control everything and just have to lean into the storm that is our life right now, fighting it will just cause more distress.