Namine turns 2 today! She’s come so far in such a short time, but it doesn’t feel like a short time. We’ve been through so much, and she’s just as strong, if not stronger. Judging by how sassy she is lately, she is definitely 2. I think she’s most likely eat more cake this time around. She eats constantly.

I think we’re doing something tonight for her birthday, but I don’t know what. Jess made some pasta thingy (probably salad), but I think a friend of ours wants to take us out? I guess I’ll find out when I get home.

Jess took Namine to see her pediatrician today. She (Namine) has been putting her fingers in her ears, and there are several possible explanations for that, the most concerning being a possible ear infection. That’s a negatory, though! Her ears are fine. And she’ll get her shots after her foot surgery next week.

The pulseox Namine wears at night is getting worse and worse. I tried putting it on both hands and both feet, and it alarmed and wouldn’t read her heart rate, no matter what. It finally settled down on the outside of her right foot. This is one piece of equipment we won’t be able to shun for a long time. The feeding pump is only used for night feeds now; Namine even takes most of her meds by mouth now. The suction machine, air compressor, oxygen tanks, trach supplies, all that will go away upon decannulation.

But the pulseox needs to stay so we can monitor her O2 saturation and heart rate; we know her stats will deteriorate as we get closer to the third heart surgery, the Fontan. But it won’t be like it was last time – it won’t be a sudden change, it’ll be very gradual. So, like the man said, “constant vigilance!”

I should pick up another singing balloon. She’d love it.


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