I never got a chance to post about the rest of our picnic day, when we went to my uncle’s for the Eiche family get-together. Namine ate a Twinky and then took a nap on the way there. We brought Namine’s wheelchair, and she was able to speed around the deck. It was nice for her, because there was more room than in our living room, plus rolling a wheelchair is harder on carpet. Namine ate like we starved her. She ate pretty much everything we put on her plate, plus some rolls, plus nearly half my corn on the cob. (I’m pretty sure she prefers it on the cob to the little nubbins.)

We had a lot of fun catching up with people. It’s hard to believe some of these kids are so big! And then there’s us, with little Namine. :) Even the kids who are Namine’s age are like gigantor babies. You know, with huge legs. (I’ve said before that our perception of normal is altered by what we’re used to; I hold by it still.)

On top of the pending sleep study results, we may have another complication to consider. Namine’s stats while sleeping seem to average lower than we’re used to seeing. This may be an indication that we’re nearing the third heart surgery, the Fontan. While this is concerning (well, it’s heart surgery, it’s always going to be concerning), it’s also a good thing. We’ll know more when we take Namine in for her cardio appointment – I think it’s either later this month or sometime next month. But remember than Namine is far from being a normal Glen (second heart surgery) patient; her stats are much higher than they expect a Glen patient’s to be, and this is because she has caudal regression. The result is that she has less mass in her legs for her heart to pump blood to, thus increasing her heart’s overall health and performance.

Just think about that for a moment. I think that’s proof like no other that God is watching over her. We’re eight surgeries in, and every one of them has been successful. Now we’re nearing decannulation and g-tube removal, and now I’m gushing again. Sorry, but Namine is one awesome kid.

  • She really is an awesome kid. Sometimes we forget that G-d’s hand is at work in everything. Jer 29:11

  • AWESOME indeed!!! Just like her Mommy and Daddy!!!