May and June photos

One day, Loki said "boos kijken" ("angry look") and made this face. He now does it on request.

Loki loves to go for walks. Notice his 'fangs' for teeth:

Kids grow up fast these days.

Don't worry; it is just the handle.

We did an overnight in Amsterdam at the house of Richard (who designed the layout for this blog!), Maaike, Flo, and Sen. The boys played in the sand:

Television is captivating:

Bedtime books:

We went to the old zoo, Artis, near the city center. In the butterfly room:

Holding hands in the reptile room:

Goofy Mama:

On warm days, Loki can splash in our side patio area. Here, I think he trying to do "boos kijken," but is having too much fun to be angry:

This is more like it!:

Rainy days:

As described in the previous post, Loki was recently sick:

Gastroenteritis and a champion

Exhausted, and not rightfully so as I was able to spend a full day yesterday in Sauna bliss, I am writing an update.

First if all, despite a nasty gastroenteritis Loki is doing well. On Monday I received a phone call from Loki's day care teacher, who sounded rather concerned. He was not "himself," cried a lot, threw up almost every syringe they administered and he felt quite warm. As I rushed myself to his day care many thoughts crossed my mind ranging from "maybe they have been giving him the shots too fast" to "is it possible that he caught the dangerous EHEC bacteria when we were in Germany last week." Since a few weeks Germany, and the rest of Europe, is captivated by a recent outbreak of a dangerous e.coli strain named EHEC. Most people "just" get a serious and very uncomfortable gastrointestinal infection. However, approximately 10% of those diagnosed with EHEC develop HUS, a life threatening kidney disease. With only one kidney, which isn't functioning optimally, this new outbreak scares the .... out of me.

Upon arrival Loki was not very alert, looked extremely pale and barely responded to me. I found out he had not had a wet diaper in 5 hours. My heart sank and my enemy, nauseated panic, tried to take over my system. Fortunately, I was able to pull it together, call the doctor and get us, safely, to the doctor's office. She suspected a typical stomach virus and was able to explain in clear and understandable terms why this did not look all that bad to her.

A) She immediately performed all simple tests excluding a diagnosis of meningitis (deep breath)

B) If he were to have EHEC we would have seen diarrhea as well (another breath)

C) If it were hydronephrosis, you would be surprised how I work this fear in to all kinds of scenarios, he would have had other symptoms e.g. edema (yes I know this but it still pops up, and yes another deep breath)

D) Of course, with all the throwing up he would not be peeing much (and yes diaper absorb so well that we may not notice these first little tinkles, pfew)

E) A regular gastroenteritis (stomach bug) was going around, even at the day care (wish I would have known that earlier)

After all these words I did feel much calmer. The doctor consulted with the hospital and was able to speak with Loki's specialized pediatrician (Dr. Draaisma). He agreed we should go home, give Loki tylenol, ORS (pedialyte) and check in with them in a few hours if A) Loki wouldn't tolerate de ORS or B) Loki wouldn't pee within a few hours.

And here we are, five days later and no hospital trip! Big Hurrah Loki, for facing this one like a champ who has no mercy with what this virus has to show for. Loki did indeed tolerate the ORS and he did start to pee. The only issues we are dealing with at this moment are his weight loss (boohoo loss of well earned pounds) and getting Loki to eat by mouth again.

Right before Loki got sick he was up to eating about 1/3 of his daily calorie intake by mouth. We are not there, not even close..... ! It is frustrating to feel like we have to "start all over again." I know we have built a solid foundation, we just need to brush off the sand and dirt covering it up and continue to move up.

I am incredibly grateful with how well Loki is developing. I am incredibly grateful with his increasingly stronger immune system with which he fights of bugs like a typical kid. But I have to admit that the one step forward and than a step back routine, especially with regards to eating and tolerating food, is tiring now and then.

Ending with a few recent quotes: "ik heb nieuwe chocola uhkregen van mijn mama," translating to: "I got new chocolate from my mama." "Nee, wille niet deur dicht, deur open moet," translating to: "no, I don't wanne door closed, door open has to be." His sentence structure reminds me of Yoda now and then. Now I come think of it, the boy himself reminds me a bit of Yoda. Especially his increasingly more impressive and elongated toddler tantrums!

Blessings to all!

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")

Pose:

The Face while out on a bike ride:

Shades:

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:

• During our first vacation to Santa Catalina Island, Loki had his first cold ever and accompanying fever, which needed close monitoring due to his lungs. 
• While on the coast near Monterrey for my conference, Loki got a fever and had to go to the doctor.
• Before the High Sierra Music Festival, Loki was hospitalized for a few days with a bad cold.
• Before flying to Indiana for Christmas, Loki was again hospitalized for a few days with a fever and gastro enteritis
• And now, before Belgium!

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?

Photos March and April

Out for a bike ride on the polder (flood plain):

Stopping for brunch:

A real smile:

The Fake Smile:

Hat and duck:

Deja vu with an NG:

Morning stretching with Dad:

Swinging with Mom at the nearby pancake restaurant:

A weekend overnight away with Mom and Tante (Aunt) Marieke:

The Smile with Omi:

In the woods:

Test results are in...

First, I want to thank everyone for the wonderful support, positive thoughts, and prayers. It is hard to explain how much it means that, even after 2.5 years, friends, family and people unknown to us still keep us in their thoughts when we hit a bump in the road.

Today the doctor called, and what I feared happened: Loki cannot be diagnosed with pathological reflux. It means that, other than that we went through hell and back, the test basically did not conclude that Loki refluxes acidic stomach content more than any healthy person. The explanation of why he vomits as much as he does, and why it gets worse when we stop acid suppressants is somewhat of a mystery. Why, oh, why am I not surprised about this? In Loki's story it makes so much sense to not make sense!

However, the gastroenterologist explained that, although not very common, acid suppressants (such as the two drugs that he takes) can have a positive impact on non-pathological reflux. In addition, we discussed the possibility that for unknown reasons Loki may be sensitive to normal levels of acidity, and thus the regular medication has some effect as well.

We are frustrated to not have answers, especially after a disastrous week that really set Loki back. We are worried that the likelihood of answers is becoming slimmer with each test. Yet some solace was provided as well. Basically, the plan of action won't differ much from what would have happened were the test positive. With one major difference: the chance of a future Nissen fundoplication has become rather slim. One less surgery is not bad. One less opportunity to solve the issue is a little nerve wrecking, however.

What about pulling processed food out of Loki's stomach to home-test the motility of Loki's stomach? After two days I realized the results were rather inconsistent. At times I was able to pull up quite some food after hours of processing. On the other hand, on several occasions, the feeding tube immediately "sucked" into a vacuum. The doctor's explanation is that the positioning of the mickey button is probably such that the unless the stomach is "overflowing" the lining of the stomach gets sucked against the opening of the button and prevents any fluid and food to be pulled out.

Essentially, all we know is that Loki vomits frequently, less when on medication, more right after or during meals. The first step is to increase one of his reflux medication. If this does not significantly reduce the vomiting--and we really hope it will--Motillium is next (a drug to improve stomach motility).

The nephrologist was consulted, and the good news is that Loki's kidney is considered to be functioning "relatively" well. Loki is more easily dehydrated and has some on-and-off protienuria, which can cause serious long term damage. Apparently, though, the nephrologist does not think there is a contraindication against the usage of motillity drugs. If there is no significant effect after prescribing Motillium--and again we really hope there is--a gastroscopy including a biopsy would be next. Much further than that, we won't be thinking, because by then we would be done exploring and treating, unless the decision of a Nissen fundoplication is made based on negative tests.

Looking on the bright side, Loki does not suffer from pathological reflux. On the darker side, he still presents the exact same symptoms as any child who does receive the diagnosis. On the bright side, Loki may still grow out of this, and/or any of the medications may still make a difference. On the less bright side, if none of this works--and there is a realistic chance that is the case--Loki will continue a rough, bumpy road where food, eating, and hydrating remain themes for many years to come.

Ending on a positive note, Loki ate quite some food by mouth today. Yes, he did throw up almost his complete second tube feeding, but four hours later he was hungry and ate: 3 cookies, 50 grams of fruit/veggie smoothie, and approximately 50 grams of pureed pasta and veggies. This proves once again that the little guy is significantly more resilient than his mama!

Finally, before I forget, with water resistant band aid and some anti-biotic skin cleanser we are allowed to try out lake and river splashing this summer. Sometimes it is just a matter of asking enough doctors until one comes with a satisfying, yet reasonable and safe, answer!

Challenges

By now, I have three draft blog posts, but none are finished. Perhaps my goal should not be to address everything, and to limit myself to what really matters at this point in time. I find this rather challenging, however. It is so easy to focus on the medical bumps in the road, and forget all the wonderful minor and major steps Loki takes. However, the reality is that many doctors' visits lie behind us and, most likely, quite some still lie ahead of us.

First, we know that many are anxiously awaiting news on Loki's recent 24 hour esophageal pH test. Dad already mentioned in our last post that this one came with issues, and I dare say it was one of the rougher moments since Loki left the NICU two years ago.

After thrice weekly feeding therapy, an infant follow clinic visit (of 4 hours), and meeting with the pediatric surgeon in two the weeks before, Wednesday we made our way to the hospital once again. Loki's reflux medicines were put on hold for 5 days in order to get a "realistic" result of how much reflux actually occurs. We noticed an increase in vomiting, coughing, and belching after a couple days. This was accompanied by a significant decrease in food intake by mouth. In most cases, the placement of the NG is not all that complicated. In fact, it is no different than what we used to do often at home before Loki had his g-tube. Unfortunately, our lovely nurse was unable to get the tube in. Each time--and she tried approximately 6 times in each nostril--the tube got stuck after 7 centimeters. Loki, who started off very courageous and optimistic screamed louder with each try. When the nurse decided to give it a break and ask for help Loki exclaimed "Hooray, all done." A young and very gentle lab assistent got teary eyed when he told Loki we were not quite there yet.

After a call from the nurse, we were able to get assistance from a radiologist doctor. Loki kept pushing his little face in my neck and on my face for kisses, and did not want to let go when I tried to put him back on the table, under the x-ray machine. It took four people, and all their strength to get the NG in. I had to push Loki down on the table with all my might to keep him still. This was without a doubt one of the most heartbreaking and painful moments during my life as a mother.

I remember so many moments in the NICU, promising Loki that, once he was home, the poking, prodding, tubes, and hospital pains would be over. I would protect, cuddle, and love him more than anything. To hear him scream "no mama, no mama, no no" while seeing the panic and fear in his eyes built upon a lot of guilt and pain I feel for him. I want to protect Loki from pain and discomfort. Yet in order to help him get better, I am the person who forces him down on the table, unable to save him from this harsh reality. The guilt and sorrow which I feel about this throughout recent days is just the tip of the iceberg, I suspect.

Once the tube was placed and secured, I was introduced to the little machine which registered what occurred during reflux. However, what I did not know was that every little detail needed to be registered manually as well as written down. Practically, this meant that every time we started or ended a syringe of food or water (which we do about every 15-20 minutes), we pushed the on and the off button and then wrote it down. When Loki went horizontal--whether it was to sleep, to have his diaper changed, or just to play-- or got up, I pushed another on and off button and wrote it down. Medicine needed to be registered as well as every "event" including abnormal (reflux) cough, vomit, spit up, cry, etc. Add to that Loki's desire to pull out the tube, and I was ready to completely fall apart by the end of the day. To top it off, he was a bit ill with diarrhea, needing his diaper changed about every 15 minutes. We were all exhausted!

Loki slept in our bed because we needed to ensure the tube stayed in and did not disconnect from its little machine, so we barely slept. The next day we went back to the hospital to release Loki from this torturous machine. The boy we took back home, fortunately, was completely different from the little man we brought in. He was excited again, happy, and talkative. Unfortunately the 5 day break in reflux medications has had a huge impact. We are counting up to 15 vomits per day, lots of stomach agitation when we give Loki a shot of food or water, and an average of three loads of laundry per day, as well as many mop jobs. To prevent dehydration, we have been giving Loki oral rehydration salts to keep his electrolytes balanced. During our visit to the pediatrician on Friday (hospital trip number three of that week), we collected urine, and we're awaiting the results. The good news during this visit was Loki's weight gain: at 11.8 kg, up from 11.2 kg two weeks ago (albeit on a different scale).

Today we met Loki's gastroenterologist for the first time. Unfortunately, all the vomiting cost Loki 300 grams and we are back at 11.5 kg. Doctor Gierenz took her time to get to know Loki's story, but unfortunately she did not yet know any results. We had a lengthy conversation about Loki's situation. Unlike what the pediatrician said, she believed there is a small chance that these reflux issues may still improve until Loki is approximately five years of age. Before she is willing to discuss the Nissen fundoplication, she wants a better idea about what exactly causes the reflux, and thus wants to await the results of the pH probe. In addition, we must check Loki's stomach content three times per day. This means that besides our regular notation of what goes in, we literally empty his stomach by using the syringe and see how much is still left. We push that back in, wait a minute and add the next shot. Needless to say, this is somewhat of a gross job. The doctor is willing to increase the Nexium to see what the impact may be and possibly to discuss with a nephrologist the option of using Motilium. That is a motility drug which is cleared through the kidney and is known for it's damaging impact, but can have extremely positive effects on stomach motility. Finally, it is likely Loki will undergo a gastroscopy, in which the stomach and esophagus are examined with a little camera. At that time, a biopsy will be done as well. (Apparently, there are cases of esophagitis caused by food allergies where a regular gastroscopy is not enough to observe the inflammation.)

When all these tests and trials are completed, we may discuss the nissen fundoplication. This doctor thinks chances are that Loki's reflux is caused by gastric emptying rather than a less than optimal esophagal sphincter, which is what the Nissen fundoplication would address. Her reasoning is that Loki did not vomit from the very beginning, which is the case in most cases of straight-forward reflux. If she is right, the surgery could very well cause more problems.

Regardless of the cause and the treatment, we most likely have a long road ahead of us. Although we are inching back to what we know as "normal," the impact of this test has been scary. Loki barely shows any interest in eating or drinking by mouth, whereas before we had started to see the positive impact of his therapy. He gags and throws up with the littles pieces of jam in some yogurt and seems to have lost his taste for all the treats about which he had been so excited: chips, chocolate, applesauce, yogurt, ice cream etc. Even now, I do not feel that we have fully recovered. Dad and I both tense up when we hear Loki gag or cough. We can only sigh when the bucket and mop come out again. Seeing the same jackets repeatedly go into the laundry is completely frustrating. We are happy to see how resilient Loki is, but also painfully aware that every situation builds upon a large pile of traumatic events in this little guy's life. How can we protect him from more pain?

For now, we appreciate all the sweet calls and comments, and apologize for the lack of contact we have made. I am exhausted and worried about Loki's future. Even answering a phone call or email a message feels like a burden at times. With the sun coming out, the food staying in, and Loki returning to his happy and chatty self, I am sure you will hear from me again!

Reflux test tomorrow

Loki still has quite a few medical appointments. We'll write a summary soon, but for now wish to describe what we are doing this week.

Although he clearly has reflux, thus far it has not directly and inclusively observed in medical tests. The diagnosis is based on clinical observations by a variety of specialists. However, since Loki continues to throw up and have difficulties eating, his doctor is still considering a Nissen fundoplication. In order to consider such a serious surgery, the reflux has to be concluded based on a test. Tests in the past (1, 2) have not succeeded in giving useful results. So tomorrow he will start esophageal pH monitoring. He will get a special NG tube, which is inserted into his nose and down into his stomach. An X-ray will then be used to ensure that it is in exactly the right place, as this tube has pH (acidity) monitors, one for his stomach and one for his esophagus. Outside, the tube goes to a small monitoring device, and this all must stay in for 24 hours. Hopefully, this will provide solid evidence as to what exactly is going into his stomach, and help us decide whether he should have surgery.

A couple things are making this tough. One is that we had to stop his two reflux medications on Saturday. This has caused Loki to throw up a lot (i.e. six big throw ups today, three huge ones yesterday). We can't resume the medications until Thursday, and then it will take a couple days for them to take effect. In a bad case scenario, his vomiting causes so much loss of fluids that the doctors decide to not go through with the test.

The other aspect which is making this process a bit more difficult for us is that, although Loki has gone through worse, he is now older. He can now tell us how unpleasant the insertion of the NG tube is, and he will remember this more consciously. As we have been preparing him for the procedure, he shows some anxiety about the possible pain he will feel. Fortunately the promise of a tiny gift for him to play with tomorrow afternoon still makes him burst into a happy "hooray." Poor little guy!

Feb + Mar photos

A written update will soon follow. for now, sticks!

Loki has a new posed smile, which is squinting the eyes and pushing the jaw forward. (Here is his old pose.)

See what I mean?

The southern Netherlands celebrates Carnaval, several festive days right before Lent. We live just a bit into this southern, Catholic area. Nurse Margaret from California made him this wonderful outfit:

The Smile:

Again, the Smile:

With two cousins, one of whom lives in California:

Giving Sen a ride:

Reading with Mama:

At daycare:

Intensely painting at daycare:

Outside at daycare:

Growing up fast: