Tuesday, May 24, 2011

Late April / Early May photos (Belgium, beach, Paris, etc)

For Easter weekend, friends whom we know from their time in California, rented a small house in the Belgium hills, and were invited along.

Family in Belgium:

Walking with Mom in Belgium:

Painting Easter eggs in Belgium:

Goofy in Belgium:

The Crew in Belgium:

We spent last weekend at Opa Ruud's house in North Holland. We went to the beach there. Holding Opa Ruud's kite:

Splashing with Mom:

Mom and Loki went by train to Paris, where they met with Finn and his mom, whom we also know from California. Mom and Loki:

With Finn:

"Blazenbloem" ("blow flower")


The Face while out on a bike ride:


Wednesday, May 18, 2011

Better feeding?!

Loki keeps us busy, entertained, inspired, and frustrated. This whirlwind keeps us occupied while he is awake, and desiring easy relaxation while he is asleep. Consequently, we are habitually late with blogging. We've not written a text post in almost two months, and those were only about his reflux test. Before that, it was January! We apologize.

So, onto the developments. Unsurprisingly, our primary focus is on his eating, vomiting, and weight gain. A couple months ago, Loki began to finally gain some weight after many months of not doing so. He is growing both vertically and horizontally. He also seems to be vomiting a bit less, and when he does, it appears to be less directly related to receiving a shot of food or water.

However, most encouraging is a possible diagnosis and treatment of his condition. Loki obviously has reflux, but instead of it being caused by acid and/or an inadequate esophagal sphincter, we and doctors are increasingly confident that his stomach is not emptying properly. This has been considered on and off for a year now, although already mentioned by his first feeding therapist two years ago. The vague emptying test last May may have delayed reaching this conclusion. But after the recent negative acid test, doctors added a new medicine (Motilium, or Domperidone) and removed one (Zantac, which is focused on acid reflux, and is made redundant by the Nexium which we use), in addition to doubling the dose of Nexium. (Ironically, Mom took the same drug to increase her breast milk supply. It is not approved in the US, and she had to order it from Canada.)

Loki also began feeding therapy, which taught us a different method than what we used before. Instead of encouraging him to eat anything, and to become comfortable with food, even if it means just chewing and spitting out, we now only give him what he can swallow. We insist that he swallows a certain number of bites, and then offer a reward. This makes feeding sessions stressful. However, the combination of the medicine and assertive feeding sessions seems to have caused him to eat much better than ever before. He even gets hungry, a situation that initially confused us. ("Gosh, why is he so cranky each afternoon at 5?") We are keeping our fingers crossed.

Furthermore, we realized that perhaps one reason that Loki throws up, especially considering his poor stomach emptying, could be that we inject too much food into him! We thus now remove a shot or more of food if he eats well. Of course, this has always been a chicken-or-the-egg dilemma: Less food may make him hungry and encourage more eating, but we didn't want him to lose weight. We seem to have broken out of this dilemma.

Update - 8 PM CET: After coming home, Mom and I realized that Loki is now throwing up again during meals, and showing more signs of reflux. Perhaps his dosage of Motilium should be increased? We'll ask the doctor. Sigh!

Here are some various scattered thoughts:

Loki is now very much a Terrible Two toddler. This can be very tiring, as everything, from diaper changes to giving him shots of food and water (still approximately 35 times a day) can result in a tantrum, yelling, pushing,  and crying, and as a result, sometimes (intentional) vomiting.

On the other hand, Loki's development is very fun to watch. He has developed a wonderful imagination. Our previous video showed his occasional imaginary friend "Paura." He also will go to a wall and pull something imaginary out. Often it is a gift. "I bought something for you," he will say as he hands us nothing. "What is it?" "An umbrella!" Or sometimes he imagines something to be broken. From the wall, he will pull an invisible screwdriver or batteries to fix it.

Loki also knows most letters and numbers, as we tried to capture in the previous video.

Loki corrected my Dutch. At the playground, I was talking to him in Dutch, as there was another young child present whom I didn't want to confuse with my English. I said that a child had climbed over the fence, for which I said "hak." I didn't think Loki was paying attention to me. Without looking at me, he quietly said "hek." This made my day.

A recent urinalysis indicated that some protein leakage from Loki's kidney into his urine. Ideally it is zero, and it previously was that, but now us up to 0.8. That is still low, even within the range of error. But we'll need to monitor it.

Most nights, Loki clearly has nightmares. While half-asleep, he grunts, cries, and says "no!" This is sad and understandable.

Mom recently took Loki to Paris via train. This was a bold step: carrying all this supplies across three trains and then a subway. It was a success, and pictures will be posted soon.

A few weeks before that we spent some time with our Dutch friends whom we know from California in a vacation home in Belgium. Loki had been extremely fussy, clearly in pain and throwing up more. So, on the way to Belgium, we took him to his doctor at the hospital, and a double ear infection was discovered. Now, that is fairly common and not a huge problem. He was treated with antibiotics, which in turn gave him the worst yeast infection. We realized that nearly every time we try to travel with Loki, we have to take him to the doctor during or immediately prior:

Finally, although life continues to be challenging, we occasionally think about how it was previously much harder, peaking probably in November and December 2009. Loki had the old tube that had to be taped in. He was on the pump, and we were waking up several times during the night to turn it on and off. Heck, we'd stay up early and get up late as well. His tube would come out in the middle of the night, spilling food and his stomach contents. Mom was still using the breast pump. How did we survive that?

Thursday, May 5, 2011

Video! March through present

I had lots of video to sort through, as I have not posted a video of Loki in months. As a result, this video is a bit over 30 minutes! I tried to put the better stuff toward the front. As always, if you get this by email, you probably need to click the subject line above to go to the webpage.

  • Loki makes The Face.
  • Loki asks me to lay with him, and then makes The Face again.
  • I have taught Loki that when Mom is asleep in the morning, he should be quiet, but that we can later wake her with a lamp, a kiss, and some coffee. Here he pretends to do that, but gives her the coffee via a syringe. He says "even wachten" ("just wait"). "Mama sleep. Shhh." His kisses are always sideways.
  • Loki has developed an imaginary friend, Paura (who, we think, derives from his great-aunt Paula, who is Dutch but lives in California). Here he wakes her up, sort of like Mom. 
  • In Belgium, at our rented vacation house, Loki and the other kids painted Easter eggs. Here, he only plays with the water. "Even dippen hard" = Just dipping hard/fast. He later actually painted.
  • In Belgium, Loki and the other kids looks for eggs ("ei" or "eitje") on Easter morning. I kept this clip a big long to show the back yard and surroundings of our rental house. After the first one, he says "liedjes zingen" ("sing songs"). He keeps calling for Annekarijn, who is our friend there collecting the eggs in the basket.
  • Loki gets in the river with friends in Belgium.
  • Mom sings with the boys in Belgium. Loki knows many of the motions. (I apologize that the camera keeps going out of focus.) The words are about a boy who ends up going to America.
  • Loki on the merry-go-round with friends in Belgium.
  • Loki 'sings' two songs as he is exhausted, the first in English (don't let the bedbugs bite) and the second in Dutch.
  • A circle-dance with an uncle and cousin at a family gathering at our place. At the start, he says "niet eng" ("not scary"). He often says that to reassure us and himself that something is not scary. He is easily scared.
  • Later that evening, we sing one of his favorite songs. The words are: With the fingers, with the flat hands, with the fists, with the elbows. Boom!
  • We sometimes watch live music videos. We once joked that the frontman of Phish was 'Uncle Trey.' Here, he repeats the phrase. (Sorry, Brent!) Mom then starts a string arrangement of Divided Sky, the song from which we got his second name. We often play a more typical version in the car, which he likes because we tell him it is the 'Loki Sky song.' Here he is a bit confused by the version. "Niet (i.e. not) Uncle Trey!"
  • Loki plays alone. This is not exciting, but it is always a treat to see his imagination develop, and for him to entertain himself.
  • Loki has learned many letters and numbers, and we are proud, of course. Here, he does pretty well identifying letters on his 'laptop.' The first round are the capital letters, of which he gets ten of ten. The second round of smaller ('klein') letters are a bit tougher. He calls some of them by words because, on another setting, the laptop associates letters and words. V = volcano, Y = yo-yo.
  • While reading a book with Mom, she asks him to count. He always skips seven and eight, as he does here, in Dutch. Een twee drie vier vijf zes negen tien!
  • Loki measures my feet as five, which is his favorite number. He finds it.
  • Mom and Loki read a book. He completes sentences and knows most of the letters in 'belly button.' I kept this a bit long, as at the end Loki says the hippos are at the hospital ("ziekenhuis") instead of at the beach, and that they will get shots ("priks"). He has an understandable fascination with hospitals, shots, and pain.
  • Loki gets silly before bed. "Rondtjes draaien" = turning circles. "Mama ook" = Mama also. He fetches the W. 
  • Back to Belgium: Loki plays in the 'pool,' with his friends and solo.
  • The neighborhood kids, especially one pair of sisters, take good care of Loki. Here is evidence. 
  • Loki gets a haircut from Tante (Aunt) Marieke.
  • Mom arrives while we were waiting at a trailhead. I like how he smiles when he sees her. He shows off his stick. "Kijk" = look. "Draaien ophalen" = turning and picking up. He says he is getting ducks, not fish, because of a bathroom toy fishing pole that grabs little ducks.  

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.

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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.