Week 5- brain rehab (important info)

I was so hesitant about the brain rehab. Mostly because I don’t want anything more to do. I don’t want to arrange more childcare. I don’t want to ask for more help. It all just seemed overwhelming.

I started speech therapy. They’re working with me on my cognitive delays and, of course, word finding, expression, etc.

I’ve now seen a brain injury-specific occupational therapist. I had no idea what they did. I thought occupational therapy was more for the upper body/ fine motor skills.

This therapist had so much more to offer me that I had no idea I could even get therapy for.

She’s working with me on my vision and balance issues. She found that I had a delay in my left eye with focusing, following, and tracking things. She found other things that at this point I don’t understand, but they’re causing my lack of visual focus and intermittent double vision. She realized the connection between this issue and my balance.

She’s giving me concrete things to do and exercises to help me recover faster. Neither my surgeon nor neurologist suggested this early on or even mentioned that this would be helpful.

Although to his credit, my neurologist did recommend that I do the brain rehab or whatever rehab was possible to get to my baseline. He was just not specific on how they could help.

Other components of the brain rehab are a social worker; I now need a physical therapist for my lockjaw, and possibly a vestibular therapist if I’m not improving enough with occupational therapy.

This occupational therapist is also the one who is helping guide me on returning to parenting my toddler.

My surgeon made it sound like at six weeks, the bone flap should be healed, and I should go back somewhat gradually to lifting and regular physical activity. This should be guided by pain. There were no other specific instructions.

So of course, in my mind, I’m back to being the parent of my child, and I didn’t have anyone scheduled to help me beyond this point.

I am in absolutely no condition to be the solo parent of a two-year-old right now. Outside of the lifting conditions, I am too confused, I’m too forgetful, I’m too unsteady, and I’m too overwhelmed. I cannot visually follow my toddler while he runs around. I cannot read to him for more than a few books. I get so exhausted.

I hate to say this my recovery has not been as fast or smooth as I wanted it to be. And it’s hard to say this: I’ve had no major complications. This is just regular healing from brain surgery.

This will be different for everyone, of course. But my return to parenting my toddler is slow and gradual, and I need very specific boundaries.

For example, initially, I’m only allowed to do minor lifting while seated on the floor, so moving him onto my lap, picking him up, or assisting him from seated to standing while changing diapers everything on the ground and nothing while standing up.

I’m only allowed to do one of these activities once per hour, and they need to be supervised in case I have a major setback.

The setbacks are not only pain or headaches, but there are also increased tinnitus, dizziness, or double vision.

The spotter or helper is not only there to remind me that I may need help, but they’re also there, of course, for the safety of my child.

I am to gradually increase these activities every 2 to 3 days, and I am not allowed to hold him or lift him above my waist on week 6 at all.

So here I am at the end of my help schedule with many restrictions. I am still required to have brain breaks at least every two hours, or else my brain gets incredibly overwhelmed to the point I cannot see, move, or function.

I also have a full-time therapy schedule that I need to go to several times a week with different therapists.

Very lightly, we touched on returning to work. It was discussed that the 12 weeks is likely minimum. They mentioned how they can have access to more time through long-term disability. I'm frustrated to think that this may be required. This extra time will not protect my job, but I still should be able to work within the company. This brings me stress and sadness. However, this is a later problem. I need to focus on being safe around my son. Ultimately, that is the biggest goal.