Daniel update

Words Daniel knows or is learning:

Eat
Drink
Tiger/Rawr!
Eyes
Ears
Nose
Chin
Cheek
Mouth
Teeth
Neck
Chest
Tummy
Legs
Feet
Knee
Learning arms and hands and ankles and hair
I think he knows all our names. He doesn’t “call” us, so I’m not positive, but sometimes he identifies who he’s commenting on and he will repeat the names when we practice.
Daniel and Danny
All done
Ow-ow-ow-ow
Tube and “Tube on” or “Tube off” (for putting his tube on for mealtime)
Cord
In
Out
On
Off
Light
Downstairs (for requesting to go up or down stairs)
Down (as in, “Put me down.”)
Uh-oh!
Oh no!
Help!
Thank you
All done
Bath
Lay down
Change diaper (he thinks this is one word)
Scratch (learned that when his incisions were healing)
No-no!
“Jordan!”
Shirt
Pants
Socks
“I love you”
“Brush your teeth” (thinks this is one word)
Words he’s learning: bottom, back, floor, wall, head, shhhhh, what?, this!, more?…

Words I need to teach him: Radio, music, book, couch, car, doctor, home, outside, inside…

Daniel is healing nicely from his bilateral orchiopexy and his gtube placement. His bruising and scabbing is almost gone and he’s pain free except when I mess with the gtube to put the feeding extension/tube on and off. All those doctor appointments and the surgery were a big scare for him and his “honeymoon” period wore off as fear reared its ugly head. He is having trouble sleeping during the night and remaining calm during the day. He’s not constantly upset, but you can both see and hear when he’s wearing thin. His posture becomes tense, his voice raises in pitch and volume, he demands to have all the things and stops playing creatively and then rages and cries when his demands are not met. To my eyes and my heart, it is clearly a sort of acute emotional pain and it is difficult to have no immediate way to take away the hurt. We just keep staying nearby and meeting his physical needs, praying and singing and waiting with him through it.

Jordan is doing okay. We’re trialing a new medication to see if it helps him (Risperadone). I don’t know if I’m noticing any difference, but the dose is very low, so we’ll take it slow and see. When he melts down, he hasn’t stayed in meltdown for long periods of time, so perhaps that’s part of it working? He’s a healthy, curious kid and I hope he’ll be able to engage and spend more time with us (as opposed to being alone and rocking or being destructive) again soon. He seems to really cycle between months of nice and months of hard.

The girls are doing well – growing and learning and being themselves. Each of them has their own strengths and challenges and I’m honored to be in the front row as they are growing. They need both the same amount of support as the boys and far less. It’s hard to explain. Some things just aren’t apples to apples. Anna is excited to be learning the dances she’ll be performing in her ballet recital in June. Maggie is busy reading chapter books and inventing stuff with cardboard or balloons or blankets. Carolyn is a confident five-year-old who recently had her first sleepover with a friend, “because she’s big now.”

That’s all for now. My yawns are too big to continue. Let me find a few pictures.