Saturday, August 06, 2016

One Year

Almost exactly one year ago today, we left CHOP with our little baby, his belly nearly dissected by a bright red line and a small tube that marred his pale skin. In our bag we had to carry a vial of medication, syringes, a glucometer, a plastic red case containing his emergency glucagon injection, and a letter written by our doctors to take with us to the ER in an emergency.


I was ecstatic, yes, to be finally leaving, but also a little terrified. I wondered that day how many ER visits we would have, if we would be constantly fighting against dangerous lows, as we had been doing in the hospital, and if I would ever have to stab my sweet boy with the emergency glucagon.

Over this last year, we have had some doctor's visits, of course, but the only ER trip happened when his G-tube fell out and I couldn't replace it. His blood sugars have, for the most part, been very stable as his medication and treatment regimen has continued to work well for him. And the recent refill I needed of glucagon was only because the first dose we got has now expired.

I don't know what his HI will look like in the future, but right now I am so thankful this year has been so normal.

Early last spring we started planning and talking about visiting some national parks, but once Ezra got sick, our entire summer was spent at the hospital. I felt like we had lost our whole summer to this disease, and it made me sad.

This summer has felt like such a redemption. Last week we returned from a two week road trip that included 7 nights of camping in three different national parks. We dragged Ezra's dextrose and pump with us, and he had a great time throwing rocks, getting dirty, and splashing in creeks all over the state.

The older two kids had a great time also with the s'mores and the campfires and the creeks.


We loved our time away, but as always, it was nice to get back home.

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