Next up….

Through some diligent digging (read… I annoyed people day and night), I was able to find an OT locally who works with Babynet. Thank God. We start Friday and have another OT that’s even closer that we could see if our first one doesn’t suit us. Hurdle conquered. Mountain of stress surmounted. Or at least replaced with a book where I’m learning the difference between hypo and hyper sensory sensitive. The battle to be waged with Babynet will move into next week or next month.  As we move into the proverbial clear… why is it that more hurdles pop up. ALWAYS. It can’t just be calm in this life anymore. There always has to be some emotional struggle. Some topic to keep me up and induce an addiction to Advil PM.

What is it now? Another eye surgery. Ughh.

We saw a new ophthalmologist at MUSC (the third in her life) and explained how since last July… her other eye rolls back. This means she loses vision in it when this occurs. It happens when she’s tired, sometimes more. We should be patching every day. But it’s been almost a year now and nothing has changed. It happens just as often. Maybe more but honestly I am having a hard time distinguishing exactly how often because her eye openings are slightly smaller because of her TCS. 

Here is the tricky emotional part (other than my baby going under general anesthesia again)… the guy saw her for 10 minutes. That’s it. Then we booked the date for the surgery while we were still in the office. It was so rushed. Too rushed for momma. He doesn’t know her little eye well enough yet. So we’ll be going back- even if he doesn’t need to see us.  Also… and this is where my voice catches in my throat…since it’s elective.. it feels like it’s up to me. It feels like I have 50 tons of pressure sitting on my shoulders. When she woke up the other day she gave me this incredibly sweet smile and laid so still staring at my face. I broke wide open at the moment and ever since… WHAT if something happens to her. I chose the surgery. What if…. And how do I go through it again?  Bo thinks since I’ve done it once, this should be easier. Nope. I’ve now cried once a day since Thursday.

Here’s what I know… Her vision is impaired in this current state. She can’t fully focus in speech therapy when that eye drifts. Therefore…when she starts school, she’d most likely fall behind.  Surgery could fix it. It could also mean the eye muscle he moves slips and falls off. It could mean one or more surgeries to fix this surgery. It could mean an infection in the eye… or worse… from the anesthesia. It’s with a different surgeon. One I don’t know.

So… as I sink into my Sensory Smarts book, I am balancing my time with googling DVD surgery and this surgeon’s name. There seem to be emotional land mines that I’m just learning to coexist with. When it feels like too much, I run to the ocean. I go to the gym so my body feels physical pain to try to match the panic I am feeling.

Anyway… time to call it a night. Sending y’all love.



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