Sunday, August 30, 2009

Loki update: Ongoing fever, continued growth

Loki's fever is ongoing, unfortunately. However, so are his generally good mood and impressive development. Loki started bearing weight on all fours, rocking back and forth on arms and knees. He now constantly bangs to toys together or bangs them on the table. Yesterday when I offered him a cracker for his right hand, which was already holding on to a rattler, he switched the rattler to his left hand after which he grabbed the cracker with his right hand. Pretty complex problem solving for such a tiny man, if I may say so!?

Current weight is 15 lbs and 7 oz, which brings our little guy at approximately the 35th percentile for weight, and almost 80th percentile for weight with length on the preemie chart. Little guy needs to go on a diet before we know it. On the regular chart he still charts below the 5th percentile for a 7 month old.

We have had a good friend visit who brought Loki a bag full of goodies and super cute overalls, perfect for the extremely hot weather, and in addition to that we've just done our almost daily doctors visit to figure out what is causing this everlasting low grade fever. No teeth seem to be coming out, no clear other signs either. It's somewhat of a mystery which will most likely need further investigation. Possibly we will have to see the same infectious disease doctor that treated him when he was still at Alta Bates NICU.

Speaking about the NICU. September 17th I will have my first meeting with the Alta Bates NICU partnership council as a parent representative. I am very excited about this chance to "pay back" the NICU for helping us so tremendously well.

Also following soon is a invitation to participate in our Christmas Gift drive for the babies at the NICU during this upcoming Christmas. I would love to be able to brighten the day of all those parents during the challenging Christmas days with your help. The exact how and what are being worked on.

Finally, we are still unsure what will happen with feeding therapy for Loki. He will no longer qualify through the state, still infuriated about those new regulations, and it is unclear if the insurance will pay for therapy.

Some recent photo's of our ever growing miracle.

He loves sleeping on his tummy:


Loki was very excited to meet Auntie Sharon:


Silly boy, in one of his cool overalls, shying away from the camera:


Showing off his shaking skills:


Loki met his friends Finnie for the first time. Finn sings very cool Loki Artichoki songs and promised to teach Loki how to talk:


The London Underground Hat and Paddington were gifts from Finnie and his mom. Paddington is a very special gift as the little bear friend was bought in the nieghborhood of Paddington in London where Finnie was born:


Loki's head growth has never been a problem, pretty obvious on this picture:


Mom and Loki during an outing to the Oakland Chinatown festival around the corner from where we live:


Loki is wearing yet another overall, this one came from Lova and Muus' fashionable closet:


How about this cute one piece outfit from Cousi Nicole and her son Basje?


>Loki and his early interventionist Barbara, to whom we will have to say goodbye by the end of September (don't get me started on this again....)

8 comments:

berkeleygal77 said...

So glad, as always, to hear about Loki Doki's progress! As far as the Christmas gift drive, I would just maybe call it a Holiday Gift Drive instead as there are always babies/families who do not celebrate Christmas (sorry, the Jewish gal has to put in a plug for multidenominational holiday celebrations).

Cheryl said...

Looking GOOD, Loki. Now, why the mystery fever?
Don't get me started on the budget cut insantiy. We both know who is going to suffer most--all those little ones at places like Project Pride, for exp...
EERGH! Let's cowrite an op ed piece you as parent and EI, me as parent and Disability rights advocate.
Cheryl

Suzan said...

Dear mom, dad and Loki,

Hope the fever will go down soon! I'll make some wishes for you again. Wow, Loki looks so cool with his underground hat! He looks so big, when he is sitting there! It is so nice of you to make us able to see his pictures. I'm really happy to see Loki laughing and full of joy. I wish him ad you all the best!

Love and many hugs,
Suzanna

fransje melief said...

Can imagine you want to know what's going on with this mysterious fever, but he looks so great! Well of course, that's just it: he has a constant fever because he is growing so hard! That takes a lot of hard work...By the time we're visiting California (next summer), I am sure he's a little man and not a baby anymore. xox Fransje.

Mom said...

Yeh, Fransje coming next summer, we're looking forward to that. Assuming at that point we have not yet moved to NL.

Cheryl, like the idea of an op ed. I'm not the best writer, but I'm sure you can help with that :-) Just got off the phone with Brook. It is complete insanity. Also, was parked in front of Project Pride yesterday for a few seconds. Oh my, the disgusting memories kept on coming. What a poor excuse for a program!!

Thanks for the input Jennifer, Holiday drive is more appropriate indeed!

Heleen en Frits said...

How big has he grown! It's about time to see him in real life soon. Fortunately we will! Because time flies and so de we within 5 weeks, or almost. We are looking forward to seeing Loki and mom and dad verrrryyyyyyy muuuuch. Love to you. Heleen and Frits

Richard en Maaike said...

Loki groeit inderdaad echt goed zeg! Heerlijk om te zien. En nog bijna niet te geloven dat we jullie over nog geen 4 weken gaan zien! Ik kijk er echt enorm naar uit. Richard ook hoor. We hebben nog wel contact erover. X Maaike

Kyra said...

I suppose we have to meet for a birthday gift drive here again to pack grandma with a lot of good stuff from NL! I'll try to get a presentation running of the next size clothes, for now Loki 's got the hang of that, I am sure you will be sorry to have to put away certain clothes again. Lots of chances for fashion shows, as long as he can stand it! Hope things are better. Have you got a visitor's calendar, so I can make an option on it?

Love,

Kyra

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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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.