Wednesday, March 3, 2010

On "Sky"; Rebecca gone; doctors; development (video, photos)

Early on we told of how we arrived at Loki's first name. But we never explained Sky. Mom and I are both into music, and among the music we like, nothing tops Phish. Many of you know first or second hand how experiential this is for us. Back when Mom was on bed rest, she was listening to her favorite Phish song, "The Divided Sky." It is a (mostly) instrumental, guitar driven, and soaring epic that is composed for the first eight minutes or so, and then opens up and builds from there. Here it is:

We had decided on the first name, but were stumped on the middle name. She shouts to me in the other room, "How about 'Sky'?" What I like about it is, like Magnolia, it is both a reference to music and nature without being excessive in either way.

Rebecca left a week ago Monday. We already miss her presence, company, and amazing assistance. She'll always have a special place in our household, and we look forward to seeing her again.

The swarm of doctors' visits continues. I joined Mom to take Loki to the urologist, Dr. Baskin, who did two of the three surgeries on Loki's kidney. After reviewing a kidney ultrasound, he said that it looked great. He agreed that we need to keep an eye on it, and that extra water is a good idea. But his attitude was more optimistic than that of Dr. Lo, although he also clearly stated that the Nephrologist is the Dr. to make any statements about the kidney.

Mom took Loki to the child development specialist. Dr. Daly, whom Mom knows through her many years in early intervention, was quite impressed with Loki. Here's Mom's report:

As we knew, Dr. Daly confirmed some minor delays in gross and fine motor development, in verbalizations (spoken words) as well as in adaptive skills (specifically eating). However, Loki's receptive language skills (understanding language), cognitive skills (thinking and problem solving) as well as expressive language through gestures (e.g. sign language) are coming along very well. She said "I do not think I have ever seen a baby his age, born this early, getting this far" into the test. Even since this visit two weeks ago, Loki has made some progress. When asked what the kitty says he answers "mauw" and his first word, in addition to "mama" (for both Daddy and Mama) is "baby" (he still needs some prompting). Loki has discovered walking behind his wagon and his "side to side" head motion has turned in to a meaningful shaking "no" when he does not want or like something. Finally, Loki has welcomed us to an early phase of the "the terrible twos." He throws little tantrums when he disagrees, throwing himself on the floor, making his body limb and screaming.

Although we are, of course, very proud and happy with how amazing our little guy is developing, it is not quite as natural of a process as with "typical" children. Loki needs active prompting and encouragement (almost) constantly in order to master new milestones. If we forget to reinforce and remind him of certain activities/words (e.g. who his birdie is) he quickly forgets. Typically children show plateaus in their development and have growth spurts. With Loki these plateaus are more intense and sometimes he shows significant regression to earlier stages (often, but not always, after a procedure). The encouragement and prompting are somewhat more "exaggerated" than one would expect with a "typically" developing child. This, in turn, is very typical for preemies in general, and micro-preemies in specific. The extra focus on developmental milestones is, as I've observed during many years of early intervention (and as demonstrated by research), what makes the difference in developmental outcome.

In other words, Loki is doing wonderfully well, yet his development does not unfold quite as natural from exploring the environment and observing life around him as in most children.

Other difficulties remain. Loki is generally less fussy overnight than before, but the rough nights still happen. He throws up at least once (often more) daily, but we are learning how to pace his food and water. Being in the car is now a strong trigger; it may be time to move to a forward-facing car seat. And his skin around his feeding button is often in bad condition. We must apply various cremes to it a few times per day.

Loki is now sleeping in the second bedroom. For now, Mom is sleeping overnight on the floor next to him in order to reassure him when he wakes. So far, so good.

Best of all, we took Loki on his first bike ride. We went on the bike road along the East Bay shore, from Emeryville up to the market at the Berkeley Marina, with views of the Golden Gate Bridge all along.

This video has a few clips:

  1. He shows his action-on-command, "side to side" which has also turned in to a meaningful "no." He looks for his new baby, and sort of says the word (in the last few day his "baby" has gotten more clear and is being used at more appropriate moments). He then shows his symbol for eating (smacking lips).
  2. He shares his cat's "mauw."
  3. Walking with the wagon.
  4. Loki often makes sweet moans as he falls asleep.
  5. Some of the "bad" moans Loki makes, even while he is asleep.

Bathtub Loki:

Almost in the nose:

Fluff Head:

Mmmm, paint:


Eating with Mom at the Seabreeze Cafe at the Berkeley Marina. They have the same nose:

Gonna take my bike out. We have the same expression:


marieke said...

Cool! Loki on the bike! He is getting big, wow. So nice to see him strolling around the house with his wagon. Big hug for all of you, XXX

Greet said...

Lieve , wat een prachtige video en foto's. ik geniet ervan en op de fiets ook zo geweldig. ik had jullie al even gemist op de email, dus fijn om weer wat te lezen , veel liefs van Greet

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
Read & hear about his middle name.
See photos.
See videos.

Subscribe via email

Enter your email address:

Delivered by FeedBurner

Loki's Holiday Gift Drive

Please consider donating to Loki's Holiday Gift Drive for the Alta Bates Summit Medical Center NICU. You can donate by Paypal or credit card here:

Click here for more information, including how to pay by check. For all posts on the Gift Drive, click here.