A special child on his third birthday

It has been such a long time since I wrote an update that I am not even sure anymore how it works. Generally, I think this is a good thing. Although I would have loved to keep you posted on Loki's developmental milestones, doctors' visits, and medication, I think the lack of writing simply means our lives are normalizing. On the other hand, life is also busy with two working parents (I am now working 3 days per week) and a growing toddler.

This month, though, I have to write. Loki will turn three tomorrow and that's a pretty big deal! Three years ago I was high on magnesium, sweating in a cold room, unable to focus my eyes, and seeing rainbow colors on the ceiling above my hospital bed--a bed, which even until today, I remember being moved around into a different corner of the room several times that week. (That is not true, I know.) Just as a reminder, my water broke at 23 weeks + 4 days. (Some suspicion remains about the recorded dates being almost a week ahead of the actual gestation.) I suffered from PPROM (Preterm Premature Rupture of Membranes), and there was not enough space for the little man and the amniotic fluid. For a week, Loki was stuck, unable to move anywhere else but out.... and that is exactly what he did. On October 18th, 2008 Loki decided it was time to venture into this world, as his mama's uterus just did not allow him to grow anymore. Weighing in at 1 lb  5 oz (610 grams), Loki's chances of survival were rather scary. Depending on what data one uses, at 23 weeks survival chances vary between 17% to 35%, and 24 weeks they range from 39% to 55%. So yes, turning three is quite a big deal, especially considering that unrelated to his prematurity Loki's single kidney was malfunctioning before he had even reached his due date.

However, we do not think about these past issues on a daily basis. In fact, we just mentioned how much of it often seems like a distant memory. Regardless, when we sit down and look at our lives, we realize how much our lives are still dictated by Loki's early start and failing kidney. How so? Loki is doing so well: he knows the alphabet, knows most colors, loves pretending to play the guitar, and makes up elaborate stories about getting groceries, celebrating birthdays, and fixing cars. He can eat so much better than a year ago, enjoys his day care, loves to hang out with family and friends, and enjoys commanding us around the house. All so true, but....

Loki continues to have a g-tube because most days he gets between 10-30% of his calories through it. He continues to receive the equivalent (whether food or water, by mouth or by tube) of approximately 30 shots (60 mL each) of water per day to ensure adequate urine concentration. It is thus needless to explain why one of his favorite books at the moment is "My Tubey," about a child with a g-tube.

Although doctors' visits have tapered off immensely, we still go to the hospital every 2-3 months for a general check-up, weight check, urine sample and--every other visit--a blood work-up. One of Loki's favorite pretend games is being a doctor, giving us shots, pushing tubes through our noses, taking pictures of tummies, listening to us breath ("bref"), searching for mice in our ears, and taking hip pictures (based on an x-ray performed about three months ago for which we will receive results during our next rehab visit in November).

Loki receives a standard of 4 types of medicines, totaling 9 times a day. Throwing up and uncontrolled coughing now happens only a few times a week, rather than multiple times every day. However, we constantly must be aware about how much we can push oral feeds, how much we can give him in the tube, how fast we can go, how often to give a shot, and whether a particular instance of coughing and gagging is caused by feed aversion, reflux, or behavior.

Yes, our three year old son is a great actor (see the previous video), as he should be at this age, and he knows how to make himself throw up as a means of avoiding oral feeds or going to sleep alone. Fortunately, we generally are able to approach him calmly with a clear message: "There is no gain in throwing up on purpose." However, since this behavior became a bit more worrisome than typical "terrible two" tantrums, our five hours of feeding per day (in order to get all his food in by mouth)  were put to a halt. No one had fun, and every one was grumpy. Now we feed him 30 minutes maximum, five times a day. Thus, there is now a bit more food through the tube. We continue to work on chewing and swallowing several times a day, but are happily blenderizing many of his meals just for the sake of getting the calories in. This brings me to the next point:

Loki has gained weight really well! He weighs 15 kilograms (33 pounds) and measures 92 centimeters (36 inches) tall. It is now time to wean him off the Duocal, a powder with which we add in order to increase calories in most of his meals. The tricky thing here is, according to his dietitian, he needs to gain enough weight to be able to grow in length. However, with winter around the corner, we will probably see colds and gastroenteritis, which often have a major impact on children like Loki. So reducing enough but not too much is still a bit daunting. For now, we will cut the Duocal in half and see Loki's main doctor again in December.

Overall, though, Loki is doing so incredibly well. Since our trip to California last month, English words are multiplying and his Dutch sentences are becoming more complicated and lengthy. (e.g., in Dutch he will say "Mama, I went to the store and bought you some birthday cake because we have a party.") Grammar and word order puzzle us sometimes, but generally Loki is great at verbal communication. Loki asks "Why?," "How does this work?", and "What is this for?" all day long, and he rarely seems saturated with information. At the same time, Loki is scared on a swing, a slide, and a see-saw, as well as stepping down from sidewalks and going up stairs. That said, at Margaret's home--where we so, so happily stayed during our visit to the US--he conquered a lot of his fears and dealt with some of his vestibular (balance) and proprioceptive (movement) sensory integration difficulties. The unknowns of vacation and the craziness of seeing different groups lots of our lovely American friends each caused enough stress, however, to trigger some olfactory sensory integration challenges. All of a sudden, Loki started gagging when smelling anything out of the ordinary (car fumes, his own pee diaper, perfume, food, burning wood), exclaiming "I don't want to smell that!"

Still, I dare say that our lives have normalized. We undertake normal people activities like vacationing  and hanging out with friends and family, without the constant fear of germs. Our feeding therapy has been reduced to a home-video every few months, about which we will have some agreement and disagreement with the therapist, and from which I (Mom) usually come back with some pretty good advice. Loki will most likely eat all of his food some day, but water may take a bit longer. But hey--we have a child who is developing rather age-appropriate cognitive and language skills. However, we are very careful not to think too far ahead, because the chances are that our little guy may move from his special needs group at a typical day care to a regular school. I am a bit nervous to write this down, worried that I may jinks all the progress, but the reality is that Loki is developing typically in many ways. This does not guarantee anything, but it gives hope that his life may look just a little bit easier than we could have hoped for when he was born three years ago.

A little less exciting is Loki's blood pressure, which continues to be high (108/70 with a large band, last time 128/80 with a smaller band). I finally dared to ask what this means for his future. (Yes, I did ask what the results meant for now, but with all we had to deal with I generally never want to know what things mean for Loki in the long term. I consider it amazing that I have enough space emotionally and mentally to be able to hear and process such information!) Anyway, yes, he will need to be monitored the rest of his life, and yes, he will need medicine at some point in time, especially since high blood pressure runs in the family. Whether this is during child- or adulthood is unpredictable. As I was processing this, weighing it against severe cerebral palsy, which seemed a very realistic diagnosis at birth, and would have been "good outcome" considering the survival rate, I ventured into asking about Loki's kidney. "What about it?" asked the doctor. "Well, what can we expect? How will it hold up? How healthy is it?" I realize that it may come across as odd that I have not asked this question in a while. However, having dealt with some pretty difficult news early on, the less bad news--and even the good news--just needed to be experienced then to its fullest extent as well. When Loki was still hospitalized, I needed good news, I needed normalcy, and I needed not to worry all the time. I have now allowed myself that space, and I dare say because of this, I can better process the bits of challenging news--not that there is much to worry about at this particular time. Regardless of the doctor's very positive evaluation, he said the kidney is and will be a weak link in the chain, always. He literally said: "As long as everything goes well and Loki is healthy, the kidney behaves normally. But it cannot handle challenges very well, which is evident when he gets sick. Illnesses such as colds (always going hand in hand with increased vomiting), gastroentiritis (which is defined by vomiting and diarrhea), and flus will always be risks to the kidney."  Dear friends and family, it may take a LONG time before we are completely relaxed around colds, etc. Fortunately, Loki seems to be having a pretty good immune system at the moment. Although he seems to be getting a cold at the moment, he did not get the obnoxious cold during our  time in California.

With our special child, we have reached a decent level of normalcy. There is no need to encourage Loki in developing new skills on a daily basis, as there had been before. Now, all of a sudden, he masters a new milestone, leaving us in awe of his intelligence and persistence. Loki can explain that he is angry with me because I go to work and he misses me. He explains me how he is angry because I bring him to the doctor. No matter how it breaks my heart to see him struggle with his emotions around abandonment (which are perfectly normal for a child his age) and with intrusive medical treatments (which are not at all typical), I am  so proud that my son is able to eloquently express his emotions with words at this age. For example, Loki understands that airplanes fly in the air, and showed a lot of anxiety about that. He wondered whether the plane could fall down. When I gave him a rather simplistic and non-realistic explanation that "airplanes drive on the clouds," he asked Dad a few days later how the plane was able to get from the ground to the clouds! I better start brushing up on my general knowledge about everything, because "Just because!" is not a satisfactory answer to "Why?", and why should it be? If you survive being born at 24 weeks and experiencing renal failure, you deserve to get real answers.

Loki Sky, amazing human being, I wish you an absolute beautiful birthday and a wonderful, beautiful new year. You are the most amazing child to me. Thank you!