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Where We Are Now

I was looking through some of my first posts on this blog and came across the one titled How We Survive Long Hospital Stays and decided it was time to check in with myself and see how well we did to sticking to that plan. Like everything, this stay has not gone 100% as expected. We’ve had to make adjustments. But we can finally see the light at the end of the tunnel with a discharge date set.


What stood out to me most from that post was how I mentioned the importance of splitting time between the hospital and home. Unfortunately that just wasn’t able to be the reality. During the first week of the hospital stay I went home for a few days while Tony stayed with Elyse. She was an emotional mess. We realized how much she needed me during this time and felt that overall it was better for her if I stay at the hospital. To make up for not going home every week, I decided that I would take 1-2 days outside of the hospital nearby while Tony or my sister in-law stayed with her. I scheduled a pedicure, massages, and some days just went to a local coffee shop enjoying a latte and either writing for this blog or reading a book. This was so important for my mental health. Even if it was just 2-3 hour increments that I was leaving I needed those refreshes and frankly a change in scenery.


It’s been nearly 2 months since her surgery and it’s a journey I could have never fully prepared myself for. From the early days in the PICU where I found myself questioning if we made the right decision to now in rehab, getting ready to finally go home. She’s walking again with assistance, moving the left arm, talking and communicating even better than she was before surgery and most importantly, no seizures.


The best way I could describe the initial aftermath of surgery was like seeing someone after having a major stroke. She had no active movement on the left side. She would only say mommy, hi, and all done. She was struggling to swallow and had little to no emotion. Definitely not the spunky, energetic girl we brought to the hospital. The first 10 days were extremely difficult. I wasn’t sure we would get the same girl back despite what the doctors were saying.


The truth is, we didn‘t get the same girl back. Her recovery so far has exceeded our expectations. She just has this twinkle in her eye she didn’t before. I never would have believed she could have this type of recovery from a surgery leaving her with half a functioning brain. She is going to move mountains. By the grace of God she seems to finally be on the right path to fully live her life to its full potential. We have 8 more days in rehab and a lifetime ahead to see what else this strong girl of ours can accomplish.


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Dear Nichole, You must be feeling a lot of feelings right now. You‘re baby girl just underwent a major surgery. A surgery that left her weak and vulnerable yet she is no longer suffering from debilita