Another Year

It seems another year has gone by, this our first in a long time that hasn’t seemed completely overwhelming. The first half of the year saw us dealing with a few remaining scares, some testing, and continued stress, but as summer came and passed, the load began to lighten. Now we are looking up and realizing that there is a road ahead that may not be lined with hospital visits, and we are grateful.

Zoe’s health is, to put it simply, wonderful. We feel extraordinarily lucky to be where we are. So many families continue fight to get their children and loved one through their illnesses, or mourn their losses. We are acutely aware of how fortunate we are to still have Zoe with us, much less for her to be as healthy as she is.

If you recall the last medication that Zoe was taking earlier in the year was her Hydrocortisone supplement, which we have now successfully cut. There was some question of whether she would always need to take a supplement, as some patients’ bodies never return to making it in sufficient quantity, but we have. Her minimum level needed to be over 5.0, and it’s now holding at 8.0 naturally.

She has continued to grow, though it is still too hazy to tell whether or not her pace is on track to return to ‘normal’ or if she will endure some loss of height. She is currently slightly smaller than most children her age, but she is still so young, just about to turn 3, that she has plenty of time for some growth spurts to occur. A minor concern, in the scheme of things.

[youtube_sc url=”http://www.youtube.com/watch?v=aD8y4Vv-skA” theme=”light”]

Zoe’s energy level is astonishing, she is even more active than her older sister was at this age, and that’s saying something. She also seems to have a resilience that I don’t see very often in kids her age. She shrugs off knocks and tumbles and pains of all kinds, rarely crying about them. I like to attribute it to the amount of difficulty and pain she has had to endure having raised her threshold for pain in general.

There are days when she bursts into a torrent of words or a song with a big smile, twirling around or bouncing up and down, and I just tear up spontaneously. It’s hard to know how much these things affect you in the midst of them, but as time passes we are able to see.

Every parent must have their moments of awe. Mine are always tempered with an awareness of what might have been, and that emotion strikes deeply.

From here we move ahead. Zoe is turning 3 soon, with a full two years of that life consumed by the process of curing her disease, but with so much life ahead of her now. She has been in school now for a year, and has been enjoying it so much that she will move to full 5-day weeks of school this spring.

2 thoughts on “Another Year

  1. She is as pretty as a picture. I know a young boy suspected of having HLH. They are just starting the journey.

  2. a great friend’s son was just diagnosed with hlh. i just wanted to thank you for this blog; for your diligent and personal postings. it’s very helpful to someone learning about this condition and trying to see what the journey might look like. i wish lots of happiness for zoe and your family, and i thank you for this incredibly generous contribution to others.

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