It has been a long time since we've written an update on how Loki is doing, and even longer since I wrote one such post. A couple weeks ago was the third anniversary of his due date, and although we noticed it, we didn't give it focused thought. On the second and first anniversary and especially the original due date, we were more aware that it "should" have been his birthday, but now much less so. A big part of the reason is that, in general, in terms of his health, Loki's trajectory continues to be one of overall (but not continuous) improvements. Often, he goes two steps forward and one step back.
Loki's eating seemed to have "plateaued" previously, and couldn't get better. However, recently it did suddenly improve, in that he now more frequently asks for food and eats a wider range of food. We still must sternly negotiate with him to finish meals, and there are many foods which he can't or won't swallow and that we thus must puree with the blender. With significant effort each day, we can get most or all of his calories in by mouth. We use tube feeding a few times per week, but not every day, to fill in missing calories. Of course, he still gets lots of water shots, but those are gradually becoming easier, and we are able to do more of them in a shorter period of time. We hear his reflux much less. In fact, Loki is about to reach his first full month without throwing up. And the last instances of throwing up were not even caused by normal reflux, but instead were due to an apparent negative interaction between one of this anti-reflux drugs (motillium) and an antibiotic.
(While I am on the topic, it was recently "Feeding Tube Awareness Week." If you are reading this blog, then you are probably already quite aware. But I encourage you to check out this website, especially this page, and to perhaps share a bit among your own friends and family.)
Unfortunately, Loki has not gained weight in a long time, hovering around 15 kg (33 lbs). We fattened him a bit during the summer, in case he became ill during the winter, and that's been the case. He's had several colds, a couple serious fevers, and (probably) pneumonia. (We've also been sick too). We had a two-night getaway (without Loki) canceled because he was sick. However, in another sign of his overall improvement, when we took Loki to the drop-in clinic at the hospital one Saturday night because he could not shake off the pneumonia, he was not asked to stay overnight, even though we expected that he would to stay. In fact, he went all of 2011 without a hospital overnight.
Of course, Loki regularly has doctor's visits and tests, most of which are monitoring his progress rather than treatment.
- The last visit when blood and urine were tested (particularly for blood urea nitrogen (BUN) and proteinuria), they came back within normal limits. Although these have gone up and down in the past, for the first time we now have had three good results in a row.
- The eye doctor was successful as well. Loki's left eye functions 100% and his right eye at 75%, which is apparently normal for his age. There are no signs, as far as the doctor could tell right now, pointing in the direction of his history with ROP (retinopathy of prematurity).
- Best news of all however, was Loki's blood pressure check in December. His doctor did a double take because he did not believe the test himself at first. Last time, in October, it was 128/80 with a smaller band and 108/70 with the larger band (he was somewhat in between sizes). We discussed the possibility of medicine then. This time, however, it came out at 98/60 with the larger band.
- Loki has made very slow but steady progress in physical therapy. It seems that, with better shoes, he has felt more stable on his feet which has made it easier for him to begin to jump, walk up stairs, etc. These skills, in turn, seemed to have had a positive effect on his ability to integrate sensory input. It started with feeling more comfortable with vestibular input (i.e. motion, such as walking, stepping off steps, sliding etc.) and seems to have generalized to his oral tactile defensiveness (i.e., not liking certain food textures) and auditory sensitivity (i.e. not liking some sounds. All stimuli are processed a bit more smoothly which helps Loki run better, climb stairs, jump, gag less while eating challenging textures (e.g., apples, rice, bread crust, etc.).
- The hip photos taken in fall came back normal. Although Loki has somewhat inverted feet (i.e., leaning on the inside of his soles), which causes his knees to touch, he seems to adjust.
In terms of development, Loki's behavior continues to march forward. Dutch have words for both toddler (peuter) and for the next stage (kleuter, aged 3 to 6 years); it is clear that he's becoming more of a kleuter every day. He strikes me as a smart kid (but I am probably biased), with remarkable memory and ability for logic. He plays energetically while often rambling about some imaginative story. He now talks back with logic ("but Mama / Daddy / Marjolein always does that!") and tries to manipulate us with well-timed sweetness. In fact, it seems that Loki may have passed the stage of peak whiny-ness. He also seems to have taken a significant step forward in his tolerance for motion: He used to dislike being lifted, sitting on swings and see-saws, etc. Now he is jumping off of couches and wanting to be spun around. He still speaks mostly Dutch while understanding English. But he is more often making original English sentences, and not just repeating phrases. Also, he can sometimes explain to me Dutch words that I don't know.
We are thinking about which school Loki should attend. Here, kids start something like kindergarten at age four, which is only eight months away. He probably can't receive his water shots, medicines, and focused, guided meals in a normal classroom,. Furthermore, we really do not want him in a special education group, where the presence of children with learning disabilities may cause his education to be slowed down. We are presently leaning toward a school at the Sint Maartenskliniek ("St. Martin's Clinic"), a physical rehabilitation hospital where he goes occasionally for feeding therapy and regular tests. The school has small classrooms for mentally and/or physically disabled children. However, there is a special class for kids who are chronically or long term ill, and there they could give him the attention he needs. The clinic is just about three km away from our home, halfway to the city center. Moreover, it is affiliated with his current special-needs daycare. Thus, at the end of each short school day, he could take a bus over to his daycare where we could later pick him up. Most of his therapists work at the school, so transition of care would be very easy. When and if his eating and drinking improves enough, he could transfer to a more traditional school.
Generally, Loki talks a lot. He is able to ask what, where, why, who questions and he generally is able to answer similar questions. He tells pretty elaborate stories, some making more sense then others. They usually involve experiences he recently underwent and often are able to qualify the experience as cozy, happy, scary, not fun, better, his "favorite," etc. Loki says all sorts of funny things. Here are a few that we remember:
- As I mentioned, his stories and imagination have become rather vivid. For example, he recently insisted (with a little smile) that Marjolein (his sitter, a woman) was his little brother.
- Lately Loki is fascinated with pregnancy. Sometimes each of us is a mama with a baby (a stuffed animal) in our tummies. When he is the mama, he will serenely cradle his baby.
- He also plays house. We will each be one member of the next-door neighbor family. Once, he was that mother and Mama was the father, and I was the mailman. He looks at me and says, "That man in the kitchen looks like Daddy."
- In Dutch, people sometimes say they are "going like a train" when they are getting something done well. At daycare, Loki was told that he was going like a train (in terms of his development), and he replied "Yes, I go like a train because I am a big boy. My little friend D___ is going like a car."
- "Later when I am big, I'll go to the Maartens School. That is where Marja (one of his physical therapists) works. She will teach me to dance on one leg (that is his description of a physical therapy exercise). She told me that."
- "I am right, Daddy. Mama said that I may watch Molletje (his favorite cartoon)." While jumping and laughing around the house.
- Talking about sources of food, Loki said "bees make honey." When mama asked "Who makes the milk?" Loki: "You!"
- I often call him "buddy." I said, "You are now too heavy to be carried all the time, bud." Loki replied: "I am not a butt. I have a butt."
- Loki is still very fond of words and letters . When mama said, "I will write your name. What is the first letter?" he answered "L." And then continuing by asking "and next?" Loki twice spelled his name correctly.
- As I mentioned in the recent photo post, he is still crazy about music. He likes to play along, often to videos, and mostly with violin. When someone else joins and we play along with a duet, he assigns roles ("You are the one with long hair, and I am the one with short hair.") He also recently requested to play guitar along with Divided Sky, the song after which he was (sort-of) named. Not only do I like that music better, but I thought it was an appropriate request.
Finally, some logistics: We received another year of our personal budget which we can use toward a wide range of support services, including at-home child care. It is particularly good news, as that overall program was cut back by the government. Unfortunately, Loki's current 1.5 day / week sitter (Marjolein) whom we hire with this budget is moving on to other work. Also, Mama started a new job which is in our city. Instead of 90 minute commutes each way (on a good day!), she can pick him up and drop him off from day care.
We made it... with your support we did indeed meet our target for this year’s Loki Sky and his NICU Friends Holiday Fund! We are very, very excited and grateful .
"The story of Sam is one that I have told to anyone and everyone that will listen. He was born in September of 2010 at just 24 weeks and weighed only 1 lb 12 ounces. We spent 95 days in the NICU at Alta Bates, enduring many roller coaster rides as Sam went from a fragile micro- preemie to a "feeder and a grower". Those are the basic facts, but there is so much more to Sam's story. While Sam in the NICU, Sam was cared for every day by superheros: his nurses, nurse practitioner, neonatoligists, physical therapist, occupational therapists, and many many more. Each one of these people had a hand in saving the life of my son. I was so inspired by what I witnessed daily in the NICU that I allowed my story to be filmed for a Sutter Health TV ad and am now an active member of the Family Advisory Council. The first thing the Council did was set up a fund so we could help out those families less fortunate that find themselves in the NICU. It was such an easy and obvious way that we could give back and improve someone else’s stay in the NICU. It is with gratitude and purpose that I fully support the Holiday Gift Fund." -Melissa Harris 
"Molly and Patrick were born at 34 weeks and spent 20 days in the NICU. We were so lucky that they were born healthy, just a bit too too small to go home right away. It was a very stressful time, but the nurses and doctors, and especially the lactation consultant, at Alta Bates were top notch. I was so impressed by how the NICU was organized and managed. I always felt like I was getting the highest quality care for my kids. The nurses were incredibly supportive, nurturing, and knowledgeable. And even while going through my own hard times with my new babies, I realized how much I should count my blessings as I saw what other NICU families were going through. I lived 10 minutes away from the NICU and was so blessed to have strong family support. I can't imagine what it must be like for families who have to travel from far away to be with their children, or don't have the support I had. I have been waiting all year to be able to support the holiday fund and help other NICU families. It is the best way I can think of to give thanks for the care we received for our beautiful babies." -Jessica Russel, Mother of Molly and Patrick. 
"Foxen Worthing is two and a half years old. He was born at Christmastime in 2008 at 30 weeks. We spent 52 days in the NICU, including Christmas and New Years. The tenderness and generosity that the nurses, doctors, staff, fellow NICU families, and the lovely chaplain showed to us every one of those days still brings tears of gratitude to my eyes. Today, gazing upon my sweet and strong and stubborn and sly toddler, I am still overcome with gratitude. The term "miracle" makes me a little unco mfortable, but I'm not sure if there is another that conveys what happens at the NICU. Superhuman grace and love and insight and patience is expressed through all these people: paid professionals just as much as the people they serve, and these tiny creatures, grasping at life, are nurtured to health by hundreds of hands and then delivered, ready for the world, to the arms of their wide-eyed parents. I contribute to the Holiday Gift Fund in hopes of passing on some of the tender loving care that was given so freely to our family when our preemie came as a Christmas surprise." 
