Wednesday, May 30, 2012

Tonsillectomy and good stuff

As Loki is becoming older and slowly more of a typical child, writing blog posts to keep family and friends informed is more of a task. These days, writing is less of a way for us to process the craziness that used to mark our lives when Loki was just born and facing many health issues. However, since this blog is also our attempt to raise awareness about prematurity and tube feeding, support other parents, and creating a document for Loki to read when he is older,we still want to write an update now and then.

This week is a big week for Loki: his tonsils and adenoids will be removed on Friday. Generally this is not a  complicated surgery, although removing the tonsils can hurt quite a bit. After a winter of almost constant illnesses and losing weight (September=15 kg, March=13.8 kg), Loki's general doctor said he wanted the tonsils out, and we agreed. Loki's tonsils cover up much of the throat when they are healthy. When swollen, which was the case for about 5 months, the throat is almost completely closed off. The doctor suspects that simple cold viruses don't leave his body because the tonsils do not heal well, and then he gets chest colds, asthma and pneumonia. In addition, whereas Loki's oral aversion has improved over time,  swallowing has become worse since the tonsils have been swollen. The difficulty of swallowing is a huge challenge with these humongous tonsils: literally, food gets stuck and Loki gags because the passage is too small. At the same time, Loki is getting older, wants to be a big boy, and often refuses pureed food--understandably so. Thus, we have given him much more tube feeding, which is not without issues either, as Loki sometimes runs away  to avoid getting food shots. However, after a few healthy weeks, we do see improvement and weight gain again.

We know the immediate results of the surgery may be challenging, as Loki is very anxious about the procedure. When he first heard his doctor talk about the surgery he was completely obsessed with the news. For several weeks he told anyone and everyone what was going to happen. His behavior got much more difficult: he slept less and at daycare his anxiety level raised. Eventually, we promised to let him know in time when the surgery would be. It helped, he was able to let go off the topic, and for about two weeks now he is much more relaxed and happy again. But we have now told him that the surgery will be Friday. We bought some gifts, Nana sent a bag full of gifts, and we hope a sticker chart will encourage him to take sips of cold juice and lick popsicles to help with the pain and cleaning the throat. Our anticipation of potential improvement of his health and with oral food intake runs high.... Could this be a turning point?

Loki is still seen by his general doctor, Dr. Draaisma, every two to three months. We continue to be very happy with him: he is diligent, seems to be a step ahead of us, and Loki likes him. Loki's urine is still being analyzed every time we go, which is not fun because he is not yet toilet trained and requiers urine bags. Positively, the urine has come bag normal several times in a row, which means no protein leakage has been found. Also a sign of improvement? Blood work is done only twice a year now, due to several normal analyses. Loki's blood pressure was completely forgotten last time, which I guess is a sign of less worries on all of our parts. We will see Dr. Draaisma again the end of June, hoping for more normal, healthy boy messages.

This past week we saw the eye doctor, and also here the trend was improvement. Unless we notice Loki having difficulties with art work due to his cylinder, we will see the doctor a year from now. There is a chance he will have glasses once he has to read chalk boards in school because of nearsightedness, but this is pretty minor.

Our physical rehabilitation doctor has been pretty happy with Loki's improvement and sees him only twice a year. Loki is a little bit slow when it comes to his gross motor development, but he cannot quite be diagnosed with a delay. He does, however, receive individual and group physical therapy a few times a month just to ensure improvement. We do notice some steps, literally up the stairs for example, but also with his level of comfort with climbing and jumping. He actually can jump with two feet of the floor (which most kids can do between 22-30 months, as a reference), and with encouragement he walks up and down stairs. Loki is enjoying vestibular input more than he used to and just two days ago he actually road in a small carrousel all by himself. It's the small things that matter, right?

Not happening yet is toilet training. We are not pushing it, but regular encouragement and rewards are not interesting enough to create a pattern. We'll focus more on this after his surgery during a warm summer weekend when he can walk around in his "birthday suit" and run to the toilet every time a tinkle happens.

Less exciting has been his time at day care. He has had a very hard time feeling comfortable, part of which is caused by a small girl there who has an nasal feeding tube. Loki has been terrified since the tube came out of her nose when he was there. He talks about her often, and has been able to communicate with us he remembers his pH test a year ago, when the tube  did not go into his nose very well and caused pain. The poor girl is the sweetest little thing, but Loki looses sleep over seeing her on Wednesdays. Most mornings when he wakes up he asks if he goes to day care and whether she will be there. If it is one of those unfortunate days, he can cry from the moment he wakes up until after drop off time. Day care has been very supportive and understanding, but it seems Loki has projected all his anxieties and fears onto this little lady. When we pick him up, he always comments on how sweet the girl really is, only for the drama to start again the next morning at wake up time. His magical thinking has reached the level of begging for Wednesdays to not exist. Even his weekly calendar which we use to remind him of plans is being manipulated, Loki removes and hides the daycare picture when it is on Wednesday.

And after all of the above, I will take some time to brag about our ever-growing miracle child. Loki was tested in order to determine his intelligence so that the right class can be chosen when going to school. The results were rather impressive. Of course, by now we figured out our child is pretty smart. But as much as I am a clinical child development specialist, I am also Loki's proud mommy and knowing our child is "smart" is different from objectively "knowing" our child is intelligent. Where his performance IQ is developing average for his age (on the higher end nevertheless), his total IQ scores are well above average and his verbal IQ came out even higher. I have no problem sharing exact numbers with those who have a particular interest in these things, but somehow it feels a bit too public to post the numbers. Regardless, his cognition is generally in fine shape, although we do need to keep an eye on the gap between performance and verbal IQ, as this can cause some challenges along the way if the gap widens. Most likely, if you ask me, the gap will get smaller. During the first two years of his life he spent a lot of time in cars traveling to and from doctors offices. Instead of crawling around, building block towers, making puzzles and stacking rings, he sat in the car or on our laps reading books and singing songs. I believe with normalcy comes more "typical" development in Loki's case.

For now we are planning on the school at the rehab clinic, mainly because of the food and water tube shots he still needs. Also, a small class will most likely be beneficial simply for the transition to school. But both the psychologist and Loki's rehab doctor encourage us to look at regular schools. Their concern is that a special day class for sick kids will eventually move too slowly for Loki. Chances are that he either will get bored, which may cause behavioral difficulties, or he may not grow to his full potential. After the tonsillectomy, we will talk to Dr. Draaisma and figure out ways we could limit tube usage during the day, so Loki can move to a regular school by the time he turns 6 years old.

Last but not least, Loki is just being very cute, funny, and verbal. We hear more complete English sentences for example "keep doing that, Daddy" or "I am trying to do that." Dutch continues to develop well and he uses more common phrases which make us frequently laugh. He loves to brag about what he can do: "Weet je wat ik kan?" ("Do you know what I can do?") but then followed by something really silly like rolling his eyes or lifting up one foot. Most recently he made his first joke after watching a toilet training video. "You know what toilet training means, Mama? It is a toilet on a train." He also explained his Tante Marieke that "take-a-break" means that your tummy is full and you are allowed off the table to go play for a few minutes before finishing your food. Last but not least, he loves to answer to many questions or request by saying "Ja, natuurlijk, zal ik dat doen/wil ik dat..." which means "Yes,  of course I will do/want to..." And one of my recent favorites was, when asking how many kids would join us, he  solved his first math problem. I told him three kids were waiting for us. When he held up two fingers I said: Well, one more," he responded: "Oh, three. That is how old I am. Hey, and then I will be there too. Then we are with four kids."

Our amazing, wondrous boy! Please send him your healthy vibes and prayers for a speedy recovery after his tonsillectomy this Friday.

Friday, May 25, 2012

Video: March through May

In the video below:

  • Loki recites "The Itsy Bitsy Spider" mostly on his own.
  • When he is tired, he says "Ik vind jou zo lief!" (literally, "I think you are so sweet" but it is really used more like "I love you.")
  • He dances to "The Divided Sky," the song which gave him his middle name. It seems he will fit right in. (my favorite clip)
  • Loki dances with Mom to a couple songs from his favorite CD (Putamayo World Playground. Thanks, Andrea!)
  • He sings "Kort Jacques," then "Mary Had a Little Lamb," first in Dutch and then English, with Rebecca. Between the two versions of Mary, he makes his new sound of surprise. "Wha?"
  • He is the clerk at his store. He negotiates the price with Mom. A couple times, he says one of his new favorite words, "'tuurlijk," which is short for "natuurlijk" and means "naturally" or "of course."
  • Loki looks for Easter eggs and candy with friends while in Belgium.
  • He plays pretend violin along with one of his favorite cheesy videos of Vanessa Mae. As she does some sort of routine in which she collapses and runs around the stage and audience, he does the same. 
  • He makes fresh orange juice with Opa (Mom's dad)
  • He practices acupuncture, first at the office (a little audio problem), and then at home with Tante Marieke.

Monday, May 7, 2012

February, March, and April photos

Posing #1:

Posing #2:

Loki's first recognizable drawing. He said it was his face:

Band #1, with (step-)cousins:

Band #2, with Kyra's kids:

Loki goes solo:

Carnaval was in February. Loki was an elephant:

For the second year, we spent Easter weekend with the same crew in the same region. The four kids had lots of fun. Here, a friend reads to all four:

The Easter egg hunt begins

After the egg hunt:

Loki gets make-up at Easter:

He shows Tante Marieke how to perform acupuncture on a little bear:

Loki's sitter went on to other work, so she had to say goodbye:

Bedtime reading with Dad:

Bedtime reading with Mom:

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.