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Friday, April 27, 2012

Catching up.

Yep, I realize that it's been 1+ months since I've updated anyone on the kiddos.

There's actually not a lot of good news.  Well, I take that back--they are happy and healthy today, so that is wonderful.  We enjoy days like these.

The good news is that flu season is over and nobody here caught the flu.  Yay!  So that means it's time to check in with all of their doctors.  If there are procedures or surgeries on the docket, we want them to be scheduled for the summer break before the school year starts.

Good news is that they have no surgeries or procedures to endure this summer.  The bad news is that they will eventually.

Our (much beloved) orthopedic surgeon reports that their spinal curvatures are at 41% and 51%.  This is a significant increase from December.  Increased time spent in their TLSO's each day is the first prescription.  Spinal rod surgery is the next solution.

Our pulmonologist wants them on their bi-pap breathing machines at night.  Am interviewing ad firms to find a tag line with which to sell the twins on wearing big masks on their faces--held in place by big, uncomfy straps--while said machine makes loud noises.  Why does this have to be so hard?

Pulmonologist wants some baseline information on their cardiac systems, so we're adding cardiologist appointments to the docket.

Our G.I. team is dissatisfied with the twins' growth.  Nearly one year after their g-tubes were surgically inserted, Lauren is fantastically thriving while Kyle is still struggling.  Kyle is also regularly vomiting at night during his "slow drip" from his feeding pump when he wakes up with knee pain and cries.   We're frantically trying to find a solution.  In the meantime, the twins are nearly five years old and she weighs thirty pounds and he weighs twenty-six.  Not good enough.

The neurologist is just in awe.  I'm not sure he's ever experience such a loud exam room than when the Byrds are there to see him.  We love our Dr. Bernes.

Our surgical consult regarding the g-tubes is still pending.  We were supposed to visit Dr. Graziano this week, but Lauren was sick and junky and I didn't have it in me to haul them downtown and drag the 30-pound Cough Assist too.

I've also been meeting with their new school in regards to IEP's and all the accommodations they'll require as they transition to kindergarten.

That's what I've been up to, in case you thought you were busy.