Archives for posts with tag: swing

IMG_5585I am looking forward to summer.

I want lemonade, fresh fruit, berry crisp, miniature golfing, and the feeling of the sun and heat soaking in.

I want less responsibility. Fewer things to juggle. A break.

To get to summer we’ve had to get past the last few weeks.

Grace had surgery last week in Minnesota to revise her mitrofanoff. We are hoping that will be her only surgery for the foreseeable future! She’s recovering well.

While we were in Minnesota Grace got all hooked up for an EEG. We were disappointed to discover that Grace’s EEG (a study of her brain activity) hasn’t shown any improvement since fall.   Her brain continues to experience a lot of back ground noise. We’d really thought it would be better after the addition of a new medication. In the last few months, we’ve seen better focus and more emotion. We’ve had her smile at us more. Her looks and eye contact have been so much fun. Her doctor reminded us that she’s not her EEG- if we are happy with what we are seeing that’s what counts.

Amid the highly scheduled past few weeks, we were alerted that there’s potential concern for her sodium levels so we are following up with some additional testing.

It’s easy to get trapped in the thought that Grace is all the things about her that we monitor and watch so carefully.   We have to remember she is none of those things. She’s a girl who loves to swing, loves music, loves to play, digs sparkle, and has a stubborn streak.

I saw that girl after her surgery. All snuggled under a blanket.

Before surgery I found myself overwhelmed with all the things about Grace. Her scars. Her medicine. Her past experience with anesthesia, etc. There is a crazy amount of information to pass on to the team of people we are entrusting with her care for an hour and a half.

I want a summer for Grace too. She deserves a break. We’ll never be rid of all the things about her. She’ll never drink lemonade or enjoy berry crisp. But she loves flowers, swinging, getting wet (as long as the water isn’t too cold) and being outside on a beautiful day.  We’ll work to spend the summer letting those things be the focus. I look forward to it.

Joy

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Grace and I have had a quiet day in ICU. Technically she wouldn’t have to be in the ICU anymore – but because they know her, and are looking at continuity of care, they are keeping her here rather than moving her to a floor. I am very grateful for this. I would hate to have to start at the beginning explaining all of this to a new team.
Grace has been up playing in bed with some assistance. She is having fewer seizures. She’s rested some, but not really napped. She looks longingly out the window from her bed. I let her know several times that her swing is waiting for her at home. We watched Tinkerbell on TV.

Our big news – she is tolerating one ounce of pedialyte in her stomach per hour. As long as this continues later tonight we will move her up to an ounce and a half per hour. Slow and steady – that’s the plan. I’m fighting so hard not to be anxious. We’ve been here a week, we are in the home stretch. Our girl is coming back.

Joy