Wednesday, May 26, 2010

Presents for the littlest patients

Loki Sky's Holiday Gift Drive was featured in Community Connection, the neighborhood newsletter of Alta Bates Summit Medical Center. Click for a larger version. Congratulations, Kat!

Sunday, May 23, 2010

Mother's day, medical tests, and what not...

It's been a while, but as you may remember, Sunday the 9th of May was Mother's Day, and boy did we celebrate! Dad had arranged some of my favorite breakfast items, and when Loki went down for his morning nap, we had an actual calm morning meal together. I received gifts and soaked in the hot tub while reading People magazine--yes indeed, my guilty pleasure. Because it was chilly and drizzling we had to cancel Dad's plan to go on a hike. Instead we went on the steam train and the carousel in Tilden Park in the hills above Berkeley. Loki was interested and intimidated by the new types of vestibular input. We had early dinner at Bacheeso's (my long-time favorite buffet) and, upon coming home, I got to read the rest of my People magazine while Dad put Loki to bed. Many, many thanks to Loki's wonderful father and my partner in crime!

Loki is obviously a toddler, according to his proud parents, that is. He is making slow but steady progress in his gross motor development, and last weekend something "just" clicked in the language department.

Loki stands without support for up to five seconds and walks quite comfortably for long periods of time while supported with only one hand. His gait is still wide and a tiny bit immature for his adjusted age, but we are quite impressed with this jump.

Loki has a language evaluation on June 11th. However, if his recent progress is solid, we may come home from that one with good news. I believe that I may have mentioned before that Loki's speech development shows some patterns similar to those of children with apraxia of speech. Until last weekend Loki made some sounds in babbling but (A) the range of sounds was very narrow for his adjusted age and (B) when asked to reproduce those same sounds he could often just imitated "maa" or "baaa." Despite his effort to imitate whatever we encouraged, he was unable to reproduce an otherwise familiar sound. In addition to this, he made more inconsistent errors typical for apraxia of speech. The few words he happily used two months ago, were replaced by no words at all. The speech therapist at his Monday morning prevention play group, offered through Alameda County Office of Education, agreed and confirmed that a formal speech evaluation was the next step.

However, last weekend something changed and Loki's verbalizations are now taking off quite impressively for his slow start. He consistently and spontaneously uses "la-la" for lamp, "fff" for fan, "tick-tock" when he sees a clock, "maa-maa" (maan=moon in Dutch), "mjaa" (ja=yes, with the "j" sounding like "y") and "bye bye." He uses "mama" a few times per day, but "daddy" usually only when encouraged. His sound repertoire during babbling has increased immensely, though. I am very proud to report he is able to use the very guttural Dutch "G." He is starting to imitate new sounds, mainly consonants, and even a few word-approximations such as "cracker," "ka" (for kaas=cheese), "nigh-nigh" (nighty night), "uh-uh" (uh-oh), "beh" (bell), "bah" (ball), "die" (pronounced dee, meaning this), "this," and "dant" (dank=thanks). Most of these are not quite consistent but I dare say they are an emerging occurrence.

Just as a side note, these changes did not just come about, we practice almost constantly in order to establish those brain patterns. We encourage him to use sounds in addition to signs with every communicational intent and we emphasize sounds we make day in day out. Basically, we have treated his symptoms as though they were early signs of apraxia of speech and regardless of the cause, the "treatment" seems to work.

Of course we also know the wonderful world of language signs. However, Loki tends to over-generalize signs and gets stuck on the few he knows, being unable to imitate new gestures. To everything that "moves" he assigned the same sign (vehicles, flag, bird, butterfly, tree (branches move in the wind), bike, etc.). "All done," "wash hands," "open/shut," "music," "clean up," and "book" have approximately same gesture. He signs for "more," "eat" (smacking his lips), and "please." In addition he signs "work" (or an approximation thereof), "star," and sporadically "red" and "green" when we look at the stoplight. Then, of course, there is "dog/elephant/any animal on four legs," "rain," "thank you," and "on/off."

Feeding and eating continue to be the most challenging aspect of raising an otherwise happy and healthy Loki. Also in this area he has made quite some progress. His oral motor skills are more refined and inching towards adequacy. After a few months of very little oral intake, and a month of little weight gain, we are cautiously optimistic again. Loki weighs 24 lbs which takes him to the 75th percentile for boys his adjusted age, who were born with extremely low birth weight. Today was a long time low, but generally Loki's interest in food is increasing; he tries many different items and swallows more food. Unfortunately, we are still not even close to half a meal by mouth per day (calorie or fluid wise) so Loki has undergone and will undergo some tests to determine why he is not making as much progress as expected. The therapists and doctor are confused as Loki does not present with the common oral aversions at this point in time.

Two weeks ago, he had a gastric emptying study to assess the speed with which Loki's digestive system moves food along (motility). We just got back the results: normal. It may sound odd, but I am somewhat disappointed. First of all, I would have loved an answer to our 14 month ongoing battle of getting food into the boy. In addition, this would have been the easiest of problems to address (medication). Also, Loki being squished inside a machine for over an hour would not have been "for nothing," and the upcoming upper gastrointestinal series and swallowing study could perhaps have been canceled or at least postponed. The latter two tests will take place back-to-back on May 28Th and are remarkably unpleasant. Regardless, Loki did incredibly well during the first study, after a first few minutes of panic. Baby Einstein on the DVD player helped quite a bit to distract him.

Elaborating a bit on the eating/feeding topic: Loki still vomits. Some days one little vomit, many days several big ones. However, and this is good news, we can push food in by syringe faster now. Our timer goes off every 15-20 minutes instead of every 10 minutes between 7 am and 1am. We're hoping that this "stretching" of the stomach positively impacts Loki's sense of hunger and ability to tolerate larger quantities by mouth.

Our sleep schedule is still challenging unfortunately. Because Loki does not tolerate the continues drip on the feeding pump, we feed him between those hours of 7am and 1am by hand. We never go to sleep together and never get up at the same time as we sleep in shifts. Usually dad takes the late night shift (by his choice for those who wonder), meaning he goes to bed around 1am. He puts in earplugs, I take out mine and I have night and morning shift. Fortunately Loki sleeps through the night most days, although he still is a very noisy sleeper. This means I have my ears open anywhere between 4-7 am to make sure he is okay, not aspirating on his vomit etc. etc. Generally the evening shifter has less yet uninterrupted sleep with sleep-in hours over the weekend. The night/morning shifter has more sleep, if going to bed before 9 pm, but is awake several times during the night and barely has alone, awake time at home. Needless to say that this is not an ideal nor desired situation.

Finally, I am going to brag a little bit here. Loki knows fourteen + body parts. He loves pointing at other people's body parts and then at his own, as if to say "you have ears; I have ears too." Loki retains almost every object, person, and activity when we name it (he demonstrates by looking, pointing, grabbing) after being introduced to it once or twice. In addition, he has a remarkably refined pencil grasp (sometimes he holds a pencil or crayon with an adult-like tripod grasp while making horizontal marks). My all-time favorite, one time, trick thus far was Loki sitting on his stool, saying "daddy," pointing at the door, signing "work" and then "open." Yes, when Daddy goes to or comes home from work, he comes through the door.

Enough for now dear blog readers! Thanks for making it this far!

Monday, May 17, 2010

Grandma Lanette

We are very sad to say Goodbye to Grandma Lanette today! We are very grateful, however, that Loki had a chance to meet her. He immediately was comfortable with her and shared his cuddles, as you can see in the picture below. Rest in peace grandma Lanette!

Thursday, May 13, 2010

Videos and photos, April and May

We will soon have an update on Loki. For now, more photos and videos. As usual, if you get this by email, you'll need to click the headline or the links to get the videos. Here, in Indiana, Loki gets some early driving lessons. [I know that the video is slow, and thus out of sync with the audio. But I've spent too much time transferring this m2ts to mov to YouTube. This is good enough for me!]

Back in California, Loki experiments with a translucent hat, clings to Dad as he rides the steam train in Tilden Park in the Berkeley hills, and floats with Mom in the pool.

Watching the luggage be unloaded after we landed in San Francisco:

Loki is undergoing a pair of tests to determine why he doesn't eat. In the first, he was strapped down and monitored for over an hour, watching how food moves out of his stomach. The trooper in his gastric emptying study:

Loki has an amazing mother. On Mother's Day, we rode the little steam train in Tilden Park. With Mom:

And with Dad:

Spring has sprung. Back in the pool after months away:


Post-food, more on his face than in his tummy:

Post-paint, about as much in his tummy as on his face (seriously, if he gets the chance he will suck the paint out of the brush. Got Pica?....... :-) (for those who worry, we can assure you he does not have Pica):

Playing with Jeremy:

Tea time with the twins:

After months of pumping and then months of storage, we finished off the breast milk. The last bag:

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.