Wednesday, January 26, 2011

About time.......

It's been a long time since we wrote an appropriate update. In fact, if I remember correctly we have not given any updates since our first visit, or two, to Loki's pediatrician (or as I mentioned before his "Child doctor").

A lot has happened in Loki's world since we moved to the Netherlands. Although we expected some regression in Loki's development due to the major transition, he actually has shown a pretty steady developmental path. In fact, more often these days, we actually see Loki reach new milestones without us constantly reinforcing, introducing, and encouraging him.

Loki is currently followed by one doctor, and thus far we have been quite impressed and happy with Dr. Draaisma. He referred Loki to the St. Maarten's Clinic, a rehabilitation hospital where children are offered a variety of services, ranging from a special day class for toddlers, a school for children with developmental and behavioral issues, a feeding clinic and a huge range of inpatient and outpatient adult services as well. For well over two weeks Loki saw a number of specialists who performed an even greater variety of tests on him, some repeated from the US, some new. In short, the assessment was as follows: Loki's cognitive development is age appropriate for his chronological age (24+ months) and so is the development of his receptive language (understanding). Loki made immense strides in his expressive language development and was tested age appropriately as well. This is especially impressive since he [A] started talking very late and [B] is raised bilingual. The main issues were noted during the assessment with the OT (ergo therapeut) and PT (fysiotherapeut). Loki's gross motor skills (walking, climbing, sliding, biking, etc.) are somewhat delayed. Fine motor skills show some gaps with amazing skills in stringing beats or holding a pen, but difficulties placing blocks on top of one another and using his hands and wrists without placing his underarm on a services for support. In addition, all agreed that Loki needs a little more time to process questions and is easily distracted by sounds. These are not major concerns, but certainly something to be aware of and keep an eye on, as they can impact his learning in school when he is older.

Because Loki is basically doing "too well" for the Maartens clinic preschool, he won't be accepted at their school. The rehab doctor wants to see Loki again in 6 months and possibly repeat all the tests. In addition, they did offer physical therapy services but also felt that, at this point in time, we are offering Loki what he needs and they suspect it won't offer much extra. We are okay with the outcome, especially since Loki was referred to the Torteltuin, a special needs group within a regular day care. As this is extremely expensive, we applied for special subsidies, which we were assigned a few days ago. Two full days of Torteltuin or "Torteltown" as dad likes to call it, will be paid for as well as approximately 15 hours to pay for extra support at home. While this is all incredibly good news, it does come with extra paperwork and spending much time on the administration.

Loki started "Torteltown" last week and he absolutely loves it. He has no difficulties saying goodbye to me, he loves to share stories about whom he played with, "Jimmy is favorite" and he even has been taking naps from day one. Loki is so, so ready to engage with other children, discover new toys and build relationships with other adults. I am very grateful that this little guy is making this transition smooth and graceful, much more so than I can say about myself. I yet have to find my groove when Loki is having these new experiences. Enough work to do, but I feel restless and have a hard time focusing. The process of letting go has begun......and when Loki casually says "dag mama (bye mama)" and offers me his bolletje (little head) for a kiss when I leave, I do need to take a deep breath.

The day care placement comes with some increased worries with the regards to germs. Loki's doctor was somewhat hesitant but agreed that Loki is ready to venture out into the world and only time will tell how well Loki is able to process all the viruses and bacterias living in green snotty noses and such!

On the medical front, Loki has undergone a kidney ultrasound (all looks great) and two urinalyses, one of which showed only a very low occurrence of proteinuria (or protein leakage in urine) and for the second we could not even get numbers because the occurrence was too low. Very good news indeed. Bloodwork thus far shows that, with the higher fluid intake (50% more than a child his age and weight), there are no signs of dehydration, so we will continue the same water intake as we have had for a while now. Loki underwent a photo study to assess his reflux and, unlike what was seen a last spring, he actually does have delayed gastric emptying, whichfinally provides us with a clear explanation about why he has reflux. It is such a relief to have an answer after almost two years of struggling. The less good news here is that the medicine they prescribed (erythromycin) to help his stomach process the food a bit faster did not work. The good news? Loki has been throwing up significantly less and, with that, he is eating more. He loves to try a huge variety of foods, but he continues to have a hard time swallowing anything with texture. But hey, we are happy with baby steps (even though Loki said today "no, Loki not a baby").

We are waiting to be scheduled for 24 hour pH study in order to see whether a Nissen Fundoplication would still be an option. With the rate his vomiting is decreasing, though, we probably would not choose to move to fast in this direction. Finally, this week another visit to the St. Maartens Clinic to visit with the feeding team. We made some movies, filled out a sh&*#@ load of forms and handed out yet another huge packet of reports. Also good news from the therapists overthere; Loki qualifies for three one hour sessions a week to address oral motor delays. Happy and daunting all at the same time. As we need for me to work, and I need for me to work in an interesting setting, three visits a week is a bit much. At the same time, they were very committed to addressing this asap as Loki is interested and still able to learn new skills quickly.

Then, in February Loki will be seen by the Infant Follow up Clinic in Nijmegen, which means we finally meet the neonatologist who helped us with our transition to the Netherlands. I am excited to meet her and excited to show off our little wonderboy!

Last but certainly not least, some fun information from "the Lowlands": Despite a cold, which he hopefully shakes off soon, Loki is doing incredibly well in many regards. It seems he is growing older, wiser, naughtier, and funnier by the day. He has an incredible social memory (e.g. in knowing people's names) and he loves to read books. One of his current favorites is Curious George, and I am proud to share that he sits through the whole story listening and sometimes commenting on what he sees. Loki pretends his animals and dolls can see, hear, talk, and have feelings, which causes for very interesting and entertaining scenarios and dialog. Loki is talking up a storm, and no we are not tired of it yet, thanks for asking. He usually uses 3 to 5 word sentences but sometimes we hear 6 to 7 and even 8 word strings. It is incredibly funny to hear Loki explain the world to himself and direct us around, see him test our boundaries, and dance around the house using booty and shoulder. Loki makes up games such as "tickle my toe, my booty, my hair" and he cautiously steps outside to discover the world. Lately, he finds a lot very "eng" (scary), despite the fact that we do not emphasize the "eng" aspects of his and our world. He is cautious when it comes to physical activities. At the same time, though, he is incredibly eager to learn and explores relationships with other people. Loki loves other children and they often appear in his pretend play scenarios. Without us really putting much focus on it, Loki just started picking up colors, with pink and green being his favorite and most consistent colors (brown, blue, and orange are often correctly named as well). A few days ago Loki was looking at a magazine and said "W." When I looked up he indeed pointed at a W. He also seems to know the O and sometimes the I. But his all time favorite is the K from "mama Kakhalijn" (yes, the second K included).

We understand and are happy with the input and assessment of specialists, but our own not-so-humble opinion: Loki is an incredibly fun, sweet, smart, handsome, enthusiastic and social little man who brings us more and more joy and, yes, I barely dare say so, less and less reason to worry constantly!

May 2011 be as healthy and happy as can be!

Monday, January 17, 2011

Video: Loki in Indiana at Christmas

Loki was remarkably entertained and entertaining during our recent Christmas trip to Indiana. While I try to be selective when editing videos, I couldn't keep this one any shorter. The first 14 minutes are various episodes of him dancing and serving dinner. The last few minutes, while not as funny, are of Loki's first time playing in snow.

I nominate Papaw Mark for best supporting actor in a comedy.

Saturday, January 8, 2011

October through December video

We are behind on video. This compilation is from the last few months, but not Christmas. Items include:

  • Loki gets a car from Bo for his birthday
  • Loki gets a hospital, also on his birthday, and remembers that Papaw works with helicopters
  • Around and round = "rond" (with a hard "r")
  • first birthday candles
  • second birthday candles and singing
  • on a rocking horse with a strange head and shoulder shake
  • vacuuming the floor (this is a bit loud)
  • dancing
  • dancing again
  • Cleaning = "schoonmaken" which sounds like "skone mahkuh"

Saturday, January 1, 2011

Indiana photos

We need to write an update about Loki, and post a few videos. For now, here are photos from our recent Christmas trip to Indiana.

With Nana and Papaw:

First real snow play:


Happy face:

Coloring with Dad:


Mom prepares gift cards for the Holiday Gift Fund:

Cooking up a storm:

Dinner with Nana and two dogs:

Making dumplings with Nana:

With Cousin Taylor:

Wind with Aunt Alice:

With Papaw:

Up with Taylor:

Cousin Chloe may be Loki's biggest fan:

Gifts included several furniture sets for Loki's faerie forest lodge:

Isn't it time for a shot?

With Amber:

With Great-great-aunt Nancy

A sense of Indiana, #1: Morning from our house.

A sense of Indiana, #2: Lots of lights:

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.