Monthly Archives: May 2016

1 year and many adventures

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Lyra turned 1 year old 4 days ago. I wanted to write some inspired post about the bad, the ugly, but most importantly, the good. Unfortunately I wasn’t feeling very inspired. Things were stressful and Lyra wasn’t doing so hot. To put it bluntly, she needed to poop and couldn’t. We ended up taking her to the local branch of our children’s hospital thinking it would a quick fix…. But things never go as planned with Lyra. After a night in the emergency department we ended up inpatient at the main hospital… 

The day after her birthday. 

At this point I wanted to write something witty about basically spending her birthday in the hospital, but she nose dived and I didn’t have “witty” in me. By the third morning I was mostly just feeling desperate as Lyra was not getting better. At this stage they were talking about placing an NJ tube to try to get meds to stay in her and attack the problem from the top and bottom. She was in pain and miserable and I was one sad mama.

Then, as quickly as she went down hill, she bounced back! All of the sudden she wanted sips of water. We tried putting pedialyte through G tube, negating the need for the NJ (yay!!!). She started playing, chatting, and pooping without vomitting!!! Yesterday she played all day and had no interest in napping.

So, we celebrated her birthday. Was it idea to do it in the hospital cafeteria? No. But my family has a different perspective on “ideal” when it comes to Lyra. “Ideal” for us is that she is happy and here. And really, that is what we were celebrating. 

My mom cooked a great dinner, the fam loaded up a few cars (there were 9 people) and made the trek down to Children’s. My husband’s parents were in town too, making the total number around the table 14. Lyra wore her birthday dress, hat and bib (even though she really couldn’t eat), and we all just celebrated her being here with us. She even had a little taste of frosting. 

So here’s to my little fighter who is always keeping things interesting 

When there is no “getting better”

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When there is no “getting better”, your definition of “better” changes.

Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.

Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”

However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:

“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”

Now, does this mean that you shouldn’t ask me if Lyra is “better”?  Absolutely not!  Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.

And really, there is no cure for cute.

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