Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
-
Taking doctors’ advice seriously
The other night, Namine told us that she couldn’t scoot. “I’m only allowed to crawl,” she said. “My doctor said I shouldn’t scoot.” Jessica and I could not think of a single doctor who said that.
-
Birthday party
This evening we went over to my parents’ house for dinner to celebrate my brother’s birthday. Before we went over there, Namine took some time to draw him a birthday card.
-
Working hard
It would seem that Namine is pretty much settled back into the rhythm of physical therapy. Even though she only has it once a week — down from before the prior authorization expired, when she had it twice a week — she’s proving to be building strength and enthusiasm.
-
Support Children’s Hospital in Al’s Run
Jessica and I have started a team for Briggs & Al’s Run & Walk.
-
Look what we found
In cleaning our room yesterday, we found an old saline vial from Namine’s trache days. This brings back some memories.
-
All work and no play
All three of us — Jessica, Namine, and myself — spent the better part of the day cleaning. Namine cleaned her room, inasmuch as a five year old has the motivation to clean anything, and Jessica and I cleaned ours.
-
First cookout of the season
This morning before heading to the hospital to visit Jessica’s mom, Namine made Mother’s Day cards for Jessica’s mom and sisters (the ones who are mothers, at any rate).
-
Singing her heart out
Last night as Jessica and I were making breakfast for dinner, Namine picked up a broom — which conveniently doubles as a guitar — and sang her heart out.
-
Wheelchair appointment
A while ago, Jessica and Namine met with a wheelchair person. (Specialist? I don’t know the official title.) Reason being: Namine’s legs have begun to dangle over the seat.
-
Throwback Thursday
I guess I just missed throwback Thursday, but that’s okay. With all of Namine’s progress in her walker lately, I wanted to show you how far she’s come.
-
Back at it
It’s been over a month since Namine’s last session in physical therapy. For this reason, her therapist was afraid that Namine had lost much of the strength she’d built up since recovering from her heart surgery. She was surprised and pleased to find that this was not the case.
-
After therapy
On the way home from therapy, Namine called me on Jessica’s phone and sang Let It Go to me. Yes, the whole song. <3