trach
-
A language all our own
When Namine was little, she had to have a trach. It was what allowed her to survive, before she was big enough to withstand the jaw distraction and cleft palate repair surgeries. Even then, it took some time before she was able to be rid of the trach. During that time, we – all three…
-
Things fall apart
I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core.
-
The child who never was
I’ve seen quite a bit lately on Twitter about grieving your child’s special needs.
-
What could never be
Sometimes we find ourselves pining for something lost, perhaps for something that never even was. It sneaks up on us, Jessica and I, and suddenly we realize that Namine is almost three years old. She is moving, she talking, she is more independent every day. Where is our little baby girl? She’s still small -…
-
Looking the other way
I was going to post a bunch of pictures today and talk about my wonderful Father’s Day with my family, but that’s getting put on hold for a day. I might get around to it tonight even, but I want to talk about something more pressing on my mind than a good ol’ time. I’m…
-
Happy Mother’s Day
This post could easily be called “a look at our nearly three years of parenthood.” I know some moms who would not share this day with their husbands for their life, but thankfully Jessica is not like that. We both feel that we would not be as good separate. We would not be complete.
-
Inchstones to you, milestones to me
Namine made progress in speech last night.
-
Remembering the trach
Tonight, after Namine’s bath, she and I were in her room. I was just watching her play, but it’s such a pleasure for me. I love to see that she’s happy, and she loves having her room, a place all her own. She had to do her breather and take her medicine before play time,…
-
Still sick
After therapy this afternoon, Jessica is going to take Namine to the pediatrician.
-
Embracing the storm
I actually meant to talk about this the other day. On Sunday night we had a crazy, windy, loud thunderstorm, and Namine could not sleep.
-
Chest x-ray results
What the title says. Unfortunately, “Namine is not sick anymore” is not part of it. We’re still fighting whatever she has – whatever is giving the raspiness in her chest. On the plus side, though, Dr. Gordon is back in town and we got the okay to bring Namine in for a chest x-ray. Thanks…
-
By any other name
Today Jessica and I took Namine to her genetics appointment. It wasn’t so much for her benefit, however, as it was for ours, as her caregivers and advocates.