Monday, October 4, 2010

The walking, the talking, goodbye and hello.....

I started writing this blog post in July in our apartment in Oakland. I continued writing early September in the guestroom at Omi and Opi 's, and I finish it in October, from the couch in our own living room in Berg en Dal.

Our lives have been filled with excitement, hectic goodbyes and hellos for over three months now. We shared wonderful moments with friends in the Bay Area and had tons of support when we really needed it. We are now spending great time with family and a few friends, while have received an amazing amount of support painting our new home. A big "Thank You" to Opa and Oma, Marieke, and Martin for helping us make this house our own. And a big "Thank You" to Opi and Omi for helping out with the little guy and organizing utilities, getting us (re)acquainted with the structure of this country, and chauffeuring us around.

Meanwhile, Loki moves through his days as always. He plays with friends; he loves the "meisjes" [girls] from across the street who, with their 6 and 8 years of life experience, are incredibly interesting to him. Loki was nearly cuddled, squeezed and kissed to death by Muus and Lova [Kyra's kids] on our second birthday party in as many weeks, a few weeks ago.

During our last months in the US we had the pleasure of saying goodbye to all Loki's specialists while receiving the last US treatments and tests. A quick summary for those who are eager to know:

  • Gastroenterologist Doctor Rhee just got back from her own maternity leave, and we were very excited to be able to say goodbye and thank her for all her help. She put Loki on a low dosage of erythromycin hoings that this would help him with the motility of the GI tract. [This makes the fourth current prescription drug.] Although the gastric emptying study in spring did not show any issues, she agreed that the amount of fluid they gave him during the test may not have been enough to observe the issue. No huge change thus far, but Loki's new doctor here in the Netherlands thought the erythromycin dose was a bit low.
  • Urologist Doctor Baskin was incredibly happy with Loki's kidney ultrasound. Despite some mild renal calcinosis.
  • Nephrologist Doctor Lo was concerned about the ongoing proteinuria. Despite his low-protein diet, Loki's kidney continues to leak protein. Although the protein / creatinine ratio has been below 0.5, which is the baseline the doctor is willing to accept without intervention, it has swung up and down quite a bit. The last test came back 2.8, which it has not been since last July 2009. Her suggestion is a urine test every two months to monitor the leakage. If the ratio continues to be above 0.5 she would typically start ACE inhibitors. This is one of the main issues the doctors here in the Netherlands will monitor as well. On the other hand, the blood urea nitrogen [BUN] has gone down with the increased water intake (1.5 liter per day instead of the normal 1 liter). Time will tell as to why the kidney leaks protein and whether this will cause bigger issues in the future.
  • Ophthalmologist Doctor William Good was happy with Loki's eyes but did notice nearsightedness of -1.25 in both eyes. His suggestion was to see a specialist in a year.
  • The feeding clinic team at California Pacific Medical Center has been very pleased with Loki's progress in oral motor skills and decrease in oral aversions. However, his lack of weight gain has been a little bit surprising to them, as it also has been to Dr. Rhee and to our new pediatrician here in the Netherlands. Loki's oral motor skills are not mature for his age, but compared to other children with similar issues. In fact, he had made a huge amount of progress. Ongoing services ares still warranted.
  • The Infant Follow-up Clinic assessment came back quite good. However, I feel that the psychologist rushed Loki through some test items which he then failed, and that she assigned him some skills that are beyond his knowledge. According to the Bayley Scales of Infant Development, at 18 months adjusted age, Loki's receptive language skills function at 29 months, whereas his cognition showed skills at 20 months. (He did not cooperate for most of the tasks). That big of a difference between those domains at this age is unlikely. I think the truth lies somewhere in between. Loki's gross motor skills scored 19 months and both his fine motor skills and expressive language showed skills at 23 months. However, the speech evaluation (REEL-3) showed expressive language skills at 19 months and receptive language at 18 months: rather different numbers. We are simply quite impressed with Loki's development, and regardless of some scattered skills and minor delays, he is doing remarkably well.

Here in the Netherlands, we have had two appointments with Loki's "child doctor" (more specialized than a pediatrician, yet less than the specialists). Dr. Draaisma took his time listening to us when we shared Loki's history and he seemed to take it very seriously. His overall judgement was that most medicine dosages were too low. Thus, he wants to increase and see if the [everlasting] vomiting disappears. Loki will be referred to the Sint Maartenskliniek ("Saint Martin's Clinic"), a rehab center for kids with day care, preschool, and supposedly amazing feeding clinic that happens to be very close to our new residence. Unfortunately Dr. Draaisma does not think Loki is ready to be around too many kids (i.e. germs), and thus this transition to there won't happen until late winter or early spring.

Loki unfortunately lost almost a kilo over the past 3 months, so we had to go back up to his full 1000 calorie intake per day by feeding tube. We are not sure whether he eats less by mouth than we think, or if the increased reflux causes uncontrolled loss of calories. However, when Loki is surrounded by other kids eating, he eats significantly better. For example, a week ago we had a family gathering where "monkey see, monkey do" was quite apparent. His cousins were eating and so was he: yogurt, soup, sausage, olives, all the yummy foods.

Of course, we did quickly pick up a cold, and unfortunately have all felt rather exhausted and icky. Loki battled it well with some extra medication, but has had an ongoing low grade fever for three weeks now. We have faith that, slowly but surely, he will get better in overcoming the simple viruses without having to work so hard, but we are grateful he is doing as well as he is at the moment.

Loki soaks in his new life and despite being a bit clingier and showing some expected regression in his development. (We're back to turning on and off lamps all day long.) He is showing ones again to be a flexible and sweet little guy.

Although most strangers would not understand what Loki is trying to say, he has a huge list of words/labels he consistently assigns to people/objects/actions. Here are some consistently used labels (mostly Dutch but some English): ball, bell, baby, beer (that's Dutch for bear, not the drink), uil, giraffe, buik, nek, neus, lopen, varen, vliegen. vliegtuig, bus, fiets, hoog, fietsen, bus, vrachtwagen, bank, eten, apple, appelboter, pesto, avocado, aardbei, cracker, cookie, melk, fles, mes, fork, speen, cup, stoel, zit, slapen, kijken, blanket, wagen, car/auto, kralen, krijtje, rijden, emmer, doggy, kitty cat, turtle, fish, wash, sun, maan, star, varken, koe, duckie, Elmo, Nijntje, sock, shoe/schoen, stoplicht, stoppen, gaan, deur, lamp, fan, draaien, kaars, kaas, spuit, water, splash, nat, burp, luier, plassen, poep, douche, telephone, werken, laptop, nee, mama, daddy, ja, open, dicht, ringen, cowboy, number, oh no, aan, uit, in, wc, knikker, glasses, bath, bubble, schaap, froggie, muis, meer, klaar, oren, ogen, mond, boos, night night, comb, boom, flower, sunny, warm, etc.

Loki imitates the last word of a sentence and finishes sentences in about six songs, and answers questions such as "when it rains outside it is..... (wet)."

My personal favorite is when Loki discovered part of the couch felt warm he said "warm." When I asked him why the couch was warm he looked at it, saw the sunlight reflected on, looked outside, pointed at the sun, and said "sun."

We miss our old life in the Bay Area, yet are excited about our new life here in the Netherlands. We are looking forward to settling into our new home more when our freight arrives in a month or so.


marieke said...

Lieve mom, dad and Loki,
It is so nice to have you around the corner!! And people. this Lokiguy is realy a sweet, funny guy. His laugh makes me laugh. We do the hobbeldebobbel on the sidewalk and I was with him in the forest where we saw cows. Yesterday I drove him around in the kruiwagen.
tot morgen, tante mikkie

Anonymous said...

Thank you for the update. Interesting to hear about the differences in approach, and the possibility of a social learning preschool down the road...remember that Brianna's eating finally took off because she was in a group with kids---to this day, that is true. Home alone, she nibbles. With others, she eats tons.
As little as we actually "saw" you, we do miss the idea that you are so close. Hope you are getting some rest, and that the adjustment for Mom and Dad is going well too. As for the Warm and Sun example==he's brilliant, definitely!
Love, Cheryl and Brianna

Anonymous said...

Loki is so smart! To be able to realize that the sun warmed up the couch is really amazing. It is not surprising though, given what wonderful and insightful parents he has! I have thoroughly enjoyed reading about your transition and am always inspired by your (Jesse), Lijn's and Loki's adventures and strength. As for the cold... I think it takes time for our bodies to get used to the "new" germs, and this too will pass. I look forward to a skype date w/ you guys this weekend! hi and hugs and much love, Courtney

Richard en Maaike said...

Ik kan me voorstellen dat julie de bay area missen. Ik hoop dat jullie hier ook snel weer een thuis-gevoel zullen krijgen. Ik vind het erg fijn dat we vaker/makkelijker kunnen bellen en even in de auto kunnen om elkaar te zien. Dat zal in elk geval vaker zijn dan gemiddeld 1 keer per jaar. Nu Flo loki heeft ontmoet herkent hij hem ook meteen op de foto. Voor die tijd moest ik steeds herhalen dat het Loki was. Nu hoeft hij maar een blik te werpen en is meteen enthousiast "Dat is Loki" aan het roepen. We zien elkaar snel!! Kus Maaike

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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