Loki Sky

Loki the violinist

2012-01-02T23:42:00.003+01:00

Now that the fund drive is over, I can catch up on posting videos. After we returned from California, Loki became fascinated with violins--first from watching a busker at the grocery, then from his step-aunt Naomi. One day I searched "violin" on YouTube, and he quickly became quite keen with the top result, which is a violin duet as part of the rather cheesy Lord of the Dance. (He always prefers the pretty ladies.) Loki began to play along, and then practice the body movements: stomping, kicking, swinging the hair. He often insists that we join him in the duet. Here are a few clips, in order, as he "improves" from mid-October to mid-November. Then at the end, his aunt Marieke helps him use a real violin.

We did it! You did it!

2011-12-30T20:20:00.007+01:00

We did it! You did it! You helped us raise $3795, almost doubling our goal of $2000. Without your help it would not have been possible. We are grateful beyond words for your support.

"I cannot tell you how amazed and delighted we all were by the generosity of your donors -$3795!!!! You have managed to generate so much goodwill and provided the Family Advisory Council with a resource to help many families in need. You have touched the hearts of so many individuals." Alison Brooks, Clinical Nurse Specialist at Alta Bates NICU.

Photo above from left to right:

Nicole Tucker, Manager
Melissa Harris, mother of Sam and Family Advisory Council member
Katie Rose, Director of Women and Infant Services
Alison Brooks, Clinical Nurse Specialist
Misty Schultz, Social Worker
Anna, NICU friend, Mascha, LSNFHF Ambassador
Rob Stiles, father of Milo and Maddy and Family Advisory Council member.

Photo below: You

Photo below: Us

Many, many thanks! We wish you a beautiful and healthy New Year.

Loki Sky and his NICU Friends: Anna, Foxen, Judah and Asa, Bennett, Sam, Patrick and Molly, Gabriella and Alexandra

Gift Drive: Alexandra and Gabriella's story

2011-12-23T19:09:00.011+01:00

Going strong and going on... This is our last call for your support in our effort to support Alta Bates NICU families who--in addition to having their child in the hospital--are facing financial difficulties.

To those who have donated or supported us otherwise: "Thank You!" If you have not yet donated, please consider doing so. Especially during this current economic downtown, many families need assistance in order to buy essentials such as a child car seat, crib, and diapers. Details on how you can donate are at the end of this message.

The delivery of the check by Loki Sky and his NICU Friends ambassador Mascha is set for Thursday December 29th. Both Family Advisory Council President Rob and FAC member Melissa will be there to receive the check.

Melissa and her son Sam were featured in this beautiful Alta Bates Summit Medical Center Ad:

Please read this story of two little miracles: Alexandra and Gabriella.

Our Miracles:

24 week old Gabriella 1lb 8oz

25 week old Alexandra 1lb14oz

"Our tiny daughters had the rockiest start of any child ever born. From the very beginning we were told, 'Two steps forward, one step back.' But we still had no idea how long and arduous that journey would actually be.

"The three months our daughters were in the NICU were full of challenges, hopes, and dreams. We watched them struggle to learn how to breathe, recover from heart surgery, learn how to suck, swallow, and breathe, fight infections (meningitis and ecoli), stare death in the face numerous times and survive. As each one of these issues began to resolve itself, we began to see light at the end of the NICU tunnel. Under the ever so watchful nurses, we began to learn how to care for our daughters and to relish in the joy of a gained pound or milestone met. When our daughters were discharged we felt confident in the knowledge that they were going to be okay, and that they were ready to begin life in the outside world.

"After seven years, our daughters continue to do well. They are happy and thriving. They love to draw and play dress-up. It is so exciting watching them read and do schoolwork. Seven years ago we never thought they would do so well.

"We owe all of this to the amazing care our daughters received in the NICU. Every nurse and doctor will always hold a special place in our hearts."

For those who followed the fund last year, you may recognize Gabriella and Alexandra. Their mother Amy delivered, together with Mascha, gift-cards and books to the NICU.

Happy Holidays to all!

Please consider supporting our efforts:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to jessreyn@gmail.com. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening 615769152 t.n.v. K.C. Sprenger o.v.v. “Holiday Fund”

Deadline: Donations accepted until Tuesday the 27th of December.

Delivery: Our check will be handed over to the NICU during the NICU in the week after Christmas. Photos and stories will be shared as usual.

Thank you very much for your help!
Sincerely,
Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

Great news! Let's go further!

2011-12-18T19:46:00.008+01:00

We made it... with your support we did indeed meet our target for this year’s Loki Sky and his NICU Friends Holiday Fund! We are very, very excited and grateful .

We won’t, however, disclose the exact amount until the check is handed over to the NICU. Due to reasons beyond our control this won’t happen until the week after Christmas, unlike earlier plans. Our ambassador Mascha will visit the NICU and offer the check on behalf of everybody who donated money. We want to honor all our donors and write your name on a letter handed to the NICU at time of delivery. If you do not want to be mentioned please let us know before Saturday the 24th, in that case we will respectfully delete your name from the public list.

The benefit of this little delay is that, if you are still considering donating, we can accept donations until Tuesday the 27th of December. Although we met our goal, let’s see how far we can take this fund. The more money we are able to donate, the more families we will be able to help out.

The social workers at the NICU are some of the professionals who know better than anyone else the challenges and hardships that families face. We want to share a few words from NICU social worker Misty Schutltz. Misty is someone who has made a big difference for many NICU families, including Loki Sky and some of his friends.

Misty Schultz: "The families are always VERY appreciative of any assistance. The money is nice as we can get gift certificates, which provide the parents with choice—item, color style—which is very empowering—going shopping for your own child. The money you gather for us at Christmas lasts the entire year. We save it for the neediest families so they can purchase car seats, clothing, blankets, bassinets or other essential infant care items for their preemie. I have a story of someone who got much needed help--- a young 20 year old single mom of a 2 year old who delivered premature twins. She had very little family support. She had nothing for the twins, literally nothing in the entire, and we were able to help her get all infant supplies to help care for her babies."

Also, a quote from Loki Sky’s mama: "I very well remember those first scary months of Loki’s life. In particular, I remember a moment where I walked the NICU hallways after scrubbing my hands, which at that time were hurting and a bit bloody from the chemicals in the soap and the anti-bacterial gel. I was exhausted, sad, and scared. I just could not accept the concept of this being our birth story and only the end of it: a traumatic start, that's it. I really wanted this to be more than Loki’s difficult start. I wanted this to make sense.

"The way that I have been able to make sense of it all is ensuring that--somehow--other people can benefit from our situation. To that extent this Holiday Fund has been an opportunity for me to heal. It inspires me how this fund has brought many former preemie families together, making a difference to those following us in the NICU. Even more so, I am incredibly grateful to all our family members, friends, and returning donors who are making this possible for the third year in a row. In your effort to support families currently in need, you are also helping several former preemie families make sense of their own story. To turn a difficult life-changing event into a positive and rewarding situation is perhaps the greatest gift we could receive during the Holidays. From the bottom of my heart I thank you for this."

This is where Loki came from:

And this is where he is now:

Let's take this to new heights!!

How you can help:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to jessreyn@gmail.com. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening 615769152 t.n.v. K.C. Sprenger o.v.v. “Holiday Fund”

Deadline: Donations accepted until Tuesday the 27th of December.

Delivery: Our check will be handed over to the NICU during the NICU in the week after Christmas. Photos and stories will be shared as usual.

Thank you very much for your help!
Sincerely,

Loki Sky and his NICU Friends

www.babylokisky.blogspot.com

Bennett's story

2011-12-14T16:27:00.023+01:00

$1701 in donations thus far! We are marching toward the $2000 which we are hoping to collect in order to support families at the Alta Bates NICU in Berkeley. Once again, many, many thanks for all your support.

Not every family is blessed with a wonderfully supportive social network, or with the ability to leave their job for the duration of their baby's hospital stay or after homecoming. Loki and his NICU friends are a group of former preemie parents who, despite a traumatic start of their babies' lives, feel tremendously blessed and grateful for all the help which they received from family, friends, hospital staff, and strangers. We want all NICU families to spend critical time with their baby. We want all NICU families to be able to be with their baby in the hospital and not to worry about care for their children at home. We want families who are perfectly capable of offering their baby a socially and emotionally safe home to bring their baby home. Lack of a car seat, crib, diapers, stroller, and other necessities should not be an issue for any family. With your help, we have been able to support many families the past two years, and with your help we will be able to offer support to many more this upcoming year.

We want to share a few quotes from the mother of "baby boy" Bennett', whose story is quite a powerful one. He announced his arrival at merely 19 weeks gestation after his mother's water broke and in addition she was diagnosed with a complete placenta previa. Miraculously, his mother was able to keep him inside, allowing him to grow with practically no amniotic fluid, a situation which seriously diminished his chances of survival. Bennett came into this world with 31+5 weeks gestation. His mother spent 110 days in bed, of which 90 days in the hospital. What followed was another 60 days in the NICU and a year filled with many hospitalizations. Despite all these challenges, Bennett is developing amazingly well.

Please meet Bennett and his super mom Elisa:

"Those 90 days in that hospital bed -- waiting for Bennett to be born and wondering if he would live -- were some of the most challenging I've ever faced ... and they were immediately followed by his birth, his fairly miraculous survival and a 60-day NICU stint. That's 150 days we spent at Alta Bates. Bennett was incredibly sick and fragile at birth. On the heels of three very precarious months in a hospital bed, there were days in that NICU when I was certain I didn't have either the physical or emotional strength to get through the hypervigilance required to NICU-parent him to that background soundtrack of beeps, pings and alarms that still ring in my head today, more than a year later. But somehow, during that most unlucky time in my life ... meeting Kathalijn through Mascha, and having both of their veteran support, made me feel anything but. It was a gift. Two moms who'd been there and could shine some light on the path. I was rich with their support, empathy, and logistical know-how (ask for "so and so" nurse, make sure you eat, park on the side streets, take a break, etc.). There were dozens and dozens of NICU families in there during our NICU stay, and we all looked like zombies, floating in, washing our hands, finding our babies, peering in their incubators with all their wires and IVs and monitors... so very aware of how abnormal a start this is for a baby (and his mom).

"And yet, in all that abnormality... there was a comfort. And the only way I can explain it is that, because Mascha introduced me to Kat and Loki, the NICU knew Bennett and me before he even arrived and welcomed us with open arms. Because there was a Loki, the NICU's clinical director and a few of Loki's special nurses had visited me in my antepartum room multiple times before Bennett's arrival. This connection made ALL the difference. Loki helped me to 'belong" to a club that no one wants to be in, but hell... if you find yourself there... how grateful you will be if you can drop his name. ;)"

This Anna, she visited Elisa on Aug. 12, 2010 (Elisa was then 29 weeks pregnant). Anna was born on the same floor at 30 weeks, 3 lbs. 4 oz. Elisa continues:

"This is not the experience for 99% of Alta Bates NICU families. Most do not have 90-hospitalized days to prepare for the fact that their 'best case scenario' is a very sick and premature baby. Most do not know families who've been there before them. Many do not live in such close proximity to the hospital. Many do not have local family and friends who can offer meals and help with other children. And what is very evident to anyone who is familiar with the Alta Bates NICU... many of the NICU families lack basic financial resource. And so... the experience of having a sick and premature child is not only emotionally and logistically devastating, but it has an immediate and significant harmful financial impact. We hope that your gift and support to the most needy families in the Alta Bates NICU will provide them with a moment, at one of the most unlucky times in their lives, during which they feel an interruption of luck, good will, care and support."

Loki Sky was born at the same floor at 24 weeks gestation, weighing 1 lbs., 5 oz. This photo was taken on Aug. 5 2010, visiting Elisa who was 28 weeks pregnant that day.

If you like to help out please follow the instructions below:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to jessreyn@gmail.com. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening 615769152 t.n.v. K.C. Sprenger o.v.v. “Holiday Fund”

Deadline: Monday December 19th 2011

Thank you very much for your help!

Sincerely,

Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

Help us reach our Target

2011-12-07T15:37:00.017+01:00

Although we have shared our target for this year’s fund via Facebook, we have yet to announce the number via our email letter. For our 3^rd Annual Loki Sky and His NICU Friends Holiday Fund, we hope to collect $2000. Please help us meet this target.

How far along are we? As of today, December 8^th 2011, we already received $1125. Two more weeks to collect another $875, WE CAN DO THIS!

All the donations will benefit financially strained families whose new babies were admitted to the Alta Bates Summit Medical Center NICU in Berkeley, California. The NICU Social Workers, together with the Family Advisory Council, will ensure that families in need receive car seats, cribs, strollers, support with transportation from and to the hospital, or--in some cases--food for older siblings of the NICU baby.

How it all began, and continued:

Christmas 2008: Loki Sky at the calendar age of 2 months and at 33 weeks gestation (that is, 7 weeks before he was expected to be born). The knitted hat was made and given to us by strangers caring for our situation:

Christmas 2009: Our 1st Annual Holiday Fund was a great success. You helped us handout 56 gift bags, 5 massage certificates and approximately $1200 in gift cards for those facing economically difficult circumstances. Here is Loki Sky with some of the 56 gift bags, posing with Nurse Margaret.

Christmas 2010: Our 2^nd Annual Holiday Fund was an even bigger success with a total of $3000 donated by you. We were able to buy 64 x $20 gift cards and 64 books, one for each family in the NICU. In addition, you donated enough in order to buy $1450 in gift cards for families who needed help buying car seats, strollers and cribs. The first sorting gift cards and our letter for the NICU families, while we were in Indiana:

Then Team California (Mascha, Anna, Amy, Gabriella, and Alexandra) delivering the gift cards and books to the NICU:

Chrismtas 2011: We hope to deliver a check of $2000 to the NICU over the Holidays. Melissa Harris, member of the Family Advisory Council will accept the check from Mascha, Holiday Fund Representative, together with Misty Schultz, NICU Social Worker Extraordinaire. Photos and stories will be shared as usual.

Help us make it happen!

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to jessreyn@gmail.com. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening 615769152 t.n.v. K.C. Sprenger o.v.v. “Holiday Fund”

Deadline: Monday December 18th 2011

Thank you very much for your help!
Sincerely,
Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

2011-11-30T15:07:00.002+01:00

What a wonderful kick off to our Holiday Fund. Not even two weeks into the fund and we have already received $788 in donations. THANK YOU so very much!! If you are still contemplating whether you would like to support our fund please remember that all the donations will benefit families in the Alta Bates NICU who are facing significant financial hardship. Their economic situation threatens their ability to be with their baby in the hospital, or even worse for some, it may threaten their baby’s homecoming because they cannot afford car seats, cribs and other necessities. Please read the following testimonies and consider supporting us in our effort to support these families.

"The story of Sam is one that I have told to anyone and everyone that will listen. He was born in September of 2010 at just 24 weeks and weighed only 1 lb 12 ounces. We spent 95 days in the NICU at Alta Bates, enduring many roller coaster rides as Sam went from a fragile micro- preemie to a "feeder and a grower". Those are the basic facts, but there is so much more to Sam's story. While Sam in the NICU, Sam was cared for every day by superheros: his nurses, nurse practitioner, neonatoligists, physical therapist, occupational therapists, and many many more. Each one of these people had a hand in saving the life of my son. I was so inspired by what I witnessed daily in the NICU that I allowed my story to be filmed for a Sutter Health TV ad and am now an active member of the Family Advisory Council. The first thing the Council did was set up a fund so we could help out those families less fortunate that find themselves in the NICU. It was such an easy and obvious way that we could give back and improve someone else’s stay in the NICU. It is with gratitude and purpose that I fully support the Holiday Gift Fund." -Melissa Harris

"Molly and Patrick were born at 34 weeks and spent 20 days in the NICU. We were so lucky that they were born healthy, just a bit too too small to go home right away. It was a very stressful time, but the nurses and doctors, and especially the lactation consultant, at Alta Bates were top notch. I was so impressed by how the NICU was organized and managed. I always felt like I was getting the highest quality care for my kids. The nurses were incredibly supportive, nurturing, and knowledgeable. And even while going through my own hard times with my new babies, I realized how much I should count my blessings as I saw what other NICU families were going through. I lived 10 minutes away from the NICU and was so blessed to have strong family support. I can't imagine what it must be like for families who have to travel from far away to be with their children, or don't have the support I had. I have been waiting all year to be able to support the holiday fund and help other NICU families. It is the best way I can think of to give thanks for the care we received for our beautiful babies." -Jessica Russel, Mother of Molly and Patrick.

"Foxen Worthing is two and a half years old. He was born at Christmastime in 2008 at 30 weeks. We spent 52 days in the NICU, including Christmas and New Years. The tenderness and generosity that the nurses, doctors, staff, fellow NICU families, and the lovely chaplain showed to us every one of those days still brings tears of gratitude to my eyes. Today, gazing upon my sweet and strong and stubborn and sly toddler, I am still overcome with gratitude. The term "miracle" makes me a little unco mfortable, but I'm not sure if there is another that conveys what happens at the NICU. Superhuman grace and love and insight and patience is expressed through all these people: paid professionals just as much as the people they serve, and these tiny creatures, grasping at life, are nurtured to health by hundreds of hands and then delivered, ready for the world, to the arms of their wide-eyed parents. I contribute to the Holiday Gift Fund in hopes of passing on some of the tender loving care that was given so freely to our family when our preemie came as a Christmas surprise."

If you are currently unable to support our fund by donating money, please consider passing this email on to friends or family members who may be interested in reading our story and offering their support.

With many thanks,Loki Sky and his Friends

Photos: birthday, violin, Amsterdam, St. Nick arrives

2011-11-27T11:28:00.001+01:00

The table is prepared for the special breakfast on Loki's third birthday:

Our birthday gift: a sort of table harp, called a cymbaal (or cimbalom):

Birthday at daycare:

Loki recently became fascinated with violins, starting with a busker at the grocery, and then when his Tante Naomi brought one for his birthday. This spatula and long shoe shown have become his violin and bow:

Marieke brought her violin:

It fits better as a cello:

Carving a pumpkin into a Halloween Jack-o-lantern

On the train to Amsterdam:

In Amsterdam, visiting some American friends who are spending 6 months in Paris. The boy here was born on Loki's due date:

Sharing a bike with Mama at a neat playground in Amsterdam:

America's story and image of Santa Claus came from the Netherlands' St. Nicholas, or Sinterklaas. After coming from his home in Spain (!) via steamboat (!!), he tours the Netherlands on his white horse:

Painting, with pink hair:

Sometimes, we all work:

We are back, once again!!

2011-11-20T20:37:00.001+01:00

Dear family and friends,

We are back with the 3rd Annual “Loki Sky and his NICU Friends’ Holiday Fund” benefiting families at the Alta Bates Summit Medical Center Neonatal Intensive Care Unit. We need your help now more than ever to help families, many of whom will spend their first Holiday Season with their new babies in the hospital.

This year we launch with a different target. We hope for the same amazing contributions as the past years, but this time we will donate the money to those who need it most. The economic downturn impacts many families. For them, the combination of having a sick baby in the hospital and their difficult financial situation often causes enormous stress. For example, spending much needed time with their babies increases the chance of losing a job. Some parents need to make a choice between spending money on transportation to the hospital to be with their baby, or between buying healthy food for their older children. Others are at risk of losing their baby at discharge because they lack the money to buy a crib or car seat, a requirement to bring one’s baby home. These are families who are otherwise very capable of providing a loving and home for their babies.

We ask you to help us help those families. We all were lucky with support from friends, family and even strangers. Together we can be those strangers. We can make a significant difference in the life of a NICU baby and their family.

How you can help:

Internet: Please go to http://www.paypal.com and use a credit card or Paypal account to send money to jessreyn@gmail.com. Be sure to note "Holiday Fund" in the comments.

US: Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Please write “Holiday Fund” in the memo.

NL: Maak geld over op rekening 615769152 t.n.v. K.C. Sprenger o.v.v. “Holiday Fund”

Deadline: Monday December 18th 2011

Delivery: Our check will be handed over to the Family Advisory Council during the Holidays. Photos and stories will be shared as usual.

Thank you very much for your help!
Sincerely,
Loki Sky and his NICU Friends
www.babylokisky.blogspot.com

Videos from California

2011-11-07T20:15:00.001+01:00

Here in the Low Country, the bad news is that Loki has been struggling with a fever for 5 days. The good news is that not only is he getting better, but he didn't have to go to the hospital.

Regardless, here are some clips from California:

Loki likes to have one or two extra pacifiers, so that he can rub his face with one while slurping the other. Here, he shows how he can sneak in a fourth one.
He plays with his NICU buddy Foxen unlike with anyone else. Here, they go a bit crazy in the chapel at Children's Fairyland.
Esti is one of the funniest people I know. Loki agrees.
Drumming performance at Shaggy's.
California's coast!
Cooking pumpkin pie with Margaret
For Loki, the highlight of our trip may have been the swimming pools. His "swimming" quickly improved.
He laughs at cartoons with Mom. (form here forward, the audio volume is a bit lower...)
When he plays, he often uses a high falsetto voice. Here I captured in via the monitor.
Trying a hula hoop with Magnolia, Luna's daughter.

California photos

2011-10-23T16:32:00.003+02:00

We went to California for three weeks. At the Alta Bates NICU reunion picnic:

Loki has learned to pose, here in Golden Gate Park:

At the Tilden park kids' farm:

With Mom, Laureen, and her twins at the farm:

Playing with the twins:

With NICU buddy Foxen at our picnic:

With Anna:

Again with Anna:

Playing with Foxen in Children's Fairyland, Oakland:

With Nana and Papaw, who came out from Indiana to visit us, at the cable car:

In the tram with Mom and Nana:

On the carousel on Fisherman's Wharf:

Looking at the sea lions of Fisherman's Wharf:

Meeting with Mascha and Anna at Sausalito's tiny beach:

Doing what he loves:

At Sausalito Beach:

Dork:

With Mom at Natural Bridges Beach near Santa Cruz, on the way to Monterrey:

Mascha loaned us a backpack, and Loki held the umbrella during a light rain:

Loki now likes to play hide-and-seek, here at the Carmel Mission:

With Dad in the soft white sand of Carmel Beach:

With Mom in the Monterrey Aquarium:

In the aquarium:

Mom reading, along with Stephanie's kids:

Keeping out of the warm sun:

It was all about swimming pools. Jane has one in her apartment building:

With Finn:

With Magnolia, Luna's older daughter:

With Luna and her daughters. It can be tough to get them all in position:

Hallo!

Cooking pumpkin pie with Margaret:

On Ocean Beach, San Francisco, with the Dutch windmill in the background:

After rolling in the sand:

With Dad:

On Margaret's stoop:

He takes pictures now. This is typical:

Cleaning with Margaret on our last day:

Happy third birthday!

2011-10-18T10:27:00.000+02:00

Happy birthday, buddy. Nothing has changed my life more. I don't think words can accurately describe the progress you've made, so here are some photos.

Birth:

One:

Two:

Now three:

A special child on his third birthday

2011-10-17T14:17:00.000+02:00

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!

Loki video from August

2011-10-04T06:02:00.002+02:00

We are currently vacationing in California, and we'll have lots of photos and video from here. But for now, here are video clips from late July to early September. Yes, the aspect ratio is off (it is stretched vertically) but I don't have the energy to fix it now.

Loki dances and plays some music
He walks a dog
He gets crazy after being up too late
He sits on his first real bike
He dances on a chair, and then with Omi ("like this, mouth open")
A funny moment: He had just been dancing before this clip, but then starts to exaggerate and groan. I comment that he will be either a dancer or an actor. He replies "An actor. I am the actor. Yeah, really!"
He jumps into the ocean (a bit loud)
He builds a sand castle
He talks to himself on the beach
He plays with water, screams, and bobs his head
Pretend play

August photos: beach weekend et al

2011-09-11T13:34:00.000+02:00

With Mom's dad and step-family, we spent a night in a hotel / hostel by the sea. Loki was a bit overwhelmed by the water, but could play in sand forever,

Final rinse with cousins:

Looking with Mom:

Kiss from Mom.. not ready to leave the beach:

On the dunes with Tante Marieke:

Playing in the dunes at sunset. That's the hotel in back:

With Marjolein, his sitter for 1.5 days / week:

Chilling at the park:

Loki got his first real bike, a hand-me-down from one of K's friends:

We recently house- and pet-sat for some friends. Loki could walk a dog:

Put him to work:

Lumberjack:

Sorry for the bad photo, but it demonstrates who is boss. That's Mom's mom ("Omi") on the floor.

Good morning:

July photos

2011-08-07T21:15:00.000+02:00

We did not take enough photos in July, so here are just a few. Loki and Mom traveled last week to Germany to meet up with Mascha and Anna, whom we know from California:

Sleepy on the drive home:

At a multi-birthday party, we finally got a decent photo of Loki with Oma Anna, Mom's step-mom:

And with Mom's step-sister, Naomi:

Not much happens in our little village. But the one of the biggest annual gatherings in the Netherlands is the Four Day's March, centered in the adjacent city of Nijmegen. On one of the days, thousands of people walk through our village. People watch people walk. Yes, it is that exciting here! Here, Loki watches with our next-door neighbor:

Cooking dinner:

Video: Loki dances to Persian pop

2011-07-21T21:20:00.002+02:00

The in-laws of Mom's step-sister are from Iran. We recently joined them to celebrate a few birthdays. Loki learned some moves. It takes a minute for him to warm up, but he does get going. Warning: The sound on the video is a bit loud. It was a party, after all!

Good news on feeding, and Dad dumps difficult thoughts

2011-07-17T17:37:00.000+02:00

There have recently been some very positive developments in Loki's feeding. We previously mentioned that, since about February, we have been trying a different approach, which uses both rewards and punishments to convince him to eat. Once he started to actually swallow food, we reduced his tube feedings, both because he was getting food by mouth and because we wanted him to become hungry. We cut 1/3 of his tube feeding, and then 1/2, and then about two weeks ago we took the plunge.

Now, for the most part, Loki is getting all of his calories by mouth. Of course, we still must give him a couple dozen shots of water each day to keep his kidney rinsed. (Yes, it is an ironic coincidence that his feeding problems gave us the tube, which helps us take better care of his kidney!) And if he does not eat enough in a day, and/or throws up too much, then we give him some food via tube at the end of the day. Furthermore, most of the food he eats by mouth is liquid or blended. We will later work on chewing tougher foods. Regardless, this is a big reason to celebrate.

Although this is a big step forward for Loki, in some ways this is a step back for us. Feeding him by mouth is extremely time-consuming, confrontational, and tiring. This is especially the case for Mom, who does most of this work, by far. We (i.e. she) do (does) up to five feeding sessions per day, and on a tough day, this can add up to 4 or 5 hours. Each session is continuous cajoling, for example, by offering Loki the next piece of a toy if he just takes a certain number of bites, or warning that he'll be punished by sitting in the stroller for two minutes if he refuses. Being two years old, Loki tries to push us as hard as a he can. During a difficult session, he'll go in and out of the stroller for 45 minutes before taking a single bite. In addition, Loki has become rather creative in using gagging and vomiting to try to get his way. Mom has the patience of a saint. If I faced that, I would probably give up and move to the tube.

Loki eats much better if he is watching some video, either on our computer or smart phones. Thus, sometimes we'll reward him a short clip, or even do the whole meal in front of a video. We certainly do not like him watching this much TV, but it may be the lesser of two evils. A side effect of the confrontational feeding, and especially the vomiting as a result, is that he shows increased aversions to food and to eating. Loki is excessively sensitive to things touching his face: he almost obsessively wipes his mouth during eating, and does not like kisses on his face (never has). We plan to later transition away from any use of video.

Another challenge in this is healthy food. This is particularly important because of his kidney, which requires a special low-protein diet. We previously made super-healthy tube feedings. Now, we just want him to eat by mouth, and this sometimes has less-than-ideal dietary content. This is something we presently work on. This means much time putting together organic, well balanced meals, which still tickle his taste buds.

While all this is clearly a major positive step for Loki, it is difficult for us. Feeding him in this manner is extremely tiring--physically, mentally, and emotionally--especially for Mom. This feeding work is on top of all of his other special care, such as medicines, shots of water, throwing up, extra-caution about potential illness, numerous doctor appointments, etc. And all of this special work is in addition to the care for a normal toddler. Finally, Loki's care is added to the needs of living a 'normal' life.

On a daily basis, this leaves little room for us (individually or together) to do, think, or feel much else besides Loki's care. Furthermore, this tiredness has accumulated and has left us exhausted. Mom went on bed rest during her pregnancy almost three years ago, and the work and stress has not relented. We don't really get breaks. If one of us takes a break (as I have been able to do a few times, usually for work), it merely shifts the burden onto the other. It is even tougher for us both to get away. Not only is Loki a lot of work, but it is specialized work, and it keeps changing. To be honest, I am always trying to keep up with Mom's latest experiments and modifications to Loki's feeding. We can't simply hire any baby sitter. It is probably unsurprising that this situation often wears us down individually, and can stress our relationship.

I had previously not given much thought to raising a 'special needs' child. To the extent that I had, I believe that the extra work is obvious. Its tiring nature is also logical, although I could not have understood exactly how exhausting it is. However, what I never expected was the degree of isolation. Everyone needs someone to whom they can turn when life is difficult, either to discuss problems or just to relax and chat about other things. Yet we can't escape the feeling that very few people truly understands our situation. Sure, our close family members have pretty good ideas, as do other parents of special needs children. But when I talk with most others, I cannot help but feel there is an important gap between us which cannot be closed. This has probably contributed to my difficulty in making and maintaining friendships.

Let me clear that we are incredibly grateful for the support which we have received. In no way do I wish for these words to mean otherwise. Many of our family members, friends, colleagues, doctors, and nurses have done all that they can to help us. (In fact, Mom's mom and step-dad just took Loki for 48 hours so that we can have some rest-and-relaxation in Amsterdam! Our first two night get away without) But there are limits to what can be done and understood, and I find them to be challenging.

And most of all, let me be clear that we are incredibly grateful for Loki and his generally improving condition. If, in the fall of 2008, I could have spoken with my current self, and learned how Loki would do two and a half years in the future, I certainly would have been overjoyed. I try not to lose sight of this, although this can also be difficult.

June Video: word play

2011-07-01T20:49:00.001+02:00

In this video:

Loki makes the 'boos kijken' (angry look) face on command
While talking about razor blades, we responds 'see the knife' with his strange accent, i.e. 'knoif.' He goes on to say 'even dippen' (just dipping).
Also in the category of strange language, while watching TV with his friend ~~Sen~~ Flo, a cat walks by. Whenever Loki talks to an animal, he uses a high-pitched voice. Here, 'Hello puss!' (or 'hallo poes!')
Loki plays in our outdoor pool. 'Boink!' Boos kijken again.
Loki now sometimes dances slowly to his songs.
Circles!
Yoga stretches with Mom.

May and June photos

2011-06-20T20:40:00.003+02:00

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

2011-06-10T11:11:00.003+02:00

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!

video: beach, songs, letters, shave

2011-06-02T08:41:00.000+02:00

In this video:

Loki plays at the beach
Mom sings two songs with Loki. The first, "Hansje Pansje Kevertje," is a Dutch version of the "Itsy Bitsy Spider," but about a beetle. The second is "Wij Kikkertjes," or "We Froggies."
We work on some letters.
Loki shaves with me.

Late April / Early May photos (Belgium, beach, Paris, etc)

2011-05-24T21:37:00.001+02:00

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?!

2011-05-18T16:27:00.002+02:00

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?

Video! March through present

2011-05-05T19:16:00.002+02:00

I had lots of video to sort through, as I have not posted a video of Loki in months. As a result, this video is a bit over 30 minutes! I tried to put the better stuff toward the front. As always, if you get this by email, you probably need to click the subject line above to go to the webpage.

Loki makes The Face.
Loki asks me to lay with him, and then makes The Face again.
I have taught Loki that when Mom is asleep in the morning, he should be quiet, but that we can later wake her with a lamp, a kiss, and some coffee. Here he pretends to do that, but gives her the coffee via a syringe. He says "even wachten" ("just wait"). "Mama sleep. Shhh." His kisses are always sideways.
Loki has developed an imaginary friend, Paura (who, we think, derives from his great-aunt Paula, who is Dutch but lives in California). Here he wakes her up, sort of like Mom.
In Belgium, at our rented vacation house, Loki and the other kids painted Easter eggs. Here, he only plays with the water. "Even dippen hard" = Just dipping hard/fast. He later actually painted.
In Belgium, Loki and the other kids looks for eggs ("ei" or "eitje") on Easter morning. I kept this clip a big long to show the back yard and surroundings of our rental house. After the first one, he says "liedjes zingen" ("sing songs"). He keeps calling for Annekarijn, who is our friend there collecting the eggs in the basket.
Loki gets in the river with friends in Belgium.
Mom sings with the boys in Belgium. Loki knows many of the motions. (I apologize that the camera keeps going out of focus.) The words are about a boy who ends up going to America.
Loki on the merry-go-round with friends in Belgium.
Loki 'sings' two songs as he is exhausted, the first in English (don't let the bedbugs bite) and the second in Dutch.
A circle-dance with an uncle and cousin at a family gathering at our place. At the start, he says "niet eng" ("not scary"). He often says that to reassure us and himself that something is not scary. He is easily scared.
Later that evening, we sing one of his favorite songs. The words are: With the fingers, with the flat hands, with the fists, with the elbows. Boom!
We sometimes watch live music videos. We once joked that the frontman of Phish was 'Uncle Trey.' Here, he repeats the phrase. (Sorry, Brent!) Mom then starts a string arrangement of Divided Sky, the song from which we got his second name. We often play a more typical version in the car, which he likes because we tell him it is the 'Loki Sky song.' Here he is a bit confused by the version. "Niet (i.e. not) Uncle Trey!"
Loki plays alone. This is not exciting, but it is always a treat to see his imagination develop, and for him to entertain himself.
Loki has learned many letters and numbers, and we are proud, of course. Here, he does pretty well identifying letters on his 'laptop.' The first round are the capital letters, of which he gets ten of ten. The second round of smaller ('klein') letters are a bit tougher. He calls some of them by words because, on another setting, the laptop associates letters and words. V = volcano, Y = yo-yo.
While reading a book with Mom, she asks him to count. He always skips seven and eight, as he does here, in Dutch. Een twee drie vier vijf zes negen tien!
Loki measures my feet as five, which is his favorite number. He finds it.
Mom and Loki read a book. He completes sentences and knows most of the letters in 'belly button.' I kept this a bit long, as at the end Loki says the hippos are at the hospital ("ziekenhuis") instead of at the beach, and that they will get shots ("priks"). He has an understandable fascination with hospitals, shots, and pain.
Loki gets silly before bed. "Rondtjes draaien" = turning circles. "Mama ook" = Mama also. He fetches the W.
Back to Belgium: Loki plays in the 'pool,' with his friends and solo.
The neighborhood kids, especially one pair of sisters, take good care of Loki. Here is evidence.
Loki gets a haircut from Tante (Aunt) Marieke.
Mom arrives while we were waiting at a trailhead. I like how he smiles when he sees her. He shows off his stick. "Kijk" = look. "Draaien ophalen" = turning and picking up. He says he is getting ducks, not fish, because of a bathroom toy fishing pole that grabs little ducks.

Photos March and April

2011-04-17T11:45:00.000+02:00

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...

2011-03-31T19:12:00.004+02:00

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

2011-03-28T20:24:00.003+02:00

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

2011-03-22T22:04:00.000+01:00

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

2011-03-18T11:20:00.001+01:00

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:

January photos: Trapezoids and reflections

2011-02-05T22:01:00.000+01:00

We are often impressed by Loki's development. I suspect that most parents are proud (even of the common things) like us. In the last couple days, two things impressed us. Mom and Loki were doing a shape puzzle. Loki said "oval" as he did that shape, and then "vierkant" or "square" as he did that one, etc. And then he says "trapezoid" as he does that one!(That is "trapezium" in NL.) I think we last said that word while doing the same puzzle several months ago.

Of course, lamps are Loki's favorites. Just this week, he learned that the lamps outside are often reflections. So now he can point at a window and say "flection lamp!" and trace it back to its source.

Yesterday was the second anniversary of Loki's due date. I looked back on the blog, and was reminded that on his due date, he was transported from Oakland Children's Hospital to UCSF, and then the next day (two years ago today) he underwent his most intense surgery, the one which repaired his kidney. That seems so long ago.

We don't have many photos from January. However, I cleared Mom's phone and got a few older ones. In November, we walked with the neighbor girls who love Loki:

Then it snowed in late November. Loki slept in a bundle as Mom walked with him down the big hill:

Sinterklaas is the Dutch version of Santa, and is celebrated December 5. Here, Loki helps Opi Frits with his card:

Then Loki was in the hospital. Here, he seems confident, like he has done this all before:

But then he got a high fever:

With the kids of Kyra and Erwin:

Loki took his first trip to the big city, Amsterdam. This is right by where Mom went to grad school:

There, we stayed with Mom's step-sister. Loki watched some cartoons with his cousins:

With Opa Ruud, while Tante Marieke gives a shot:

Smiling on stairs:

Time to look for mushrooms?

We make food once per week:

About time.......

2011-01-26T15:40:00.002+01:00

It's been a long time since we wrote an appropriate update. In fact, if I remember correctly we have not given any updates since our first visit, or two, to Loki's pediatrician (or as I mentioned before his "Child doctor").

A lot has happened in Loki's world since we moved to the Netherlands. Although we expected some regression in Loki's development due to the major transition, he actually has shown a pretty steady developmental path. In fact, more often these days, we actually see Loki reach new milestones without us constantly reinforcing, introducing, and encouraging him.

Loki is currently followed by one doctor, and thus far we have been quite impressed and happy with Dr. Draaisma. He referred Loki to the St. Maarten's Clinic, a rehabilitation hospital where children are offered a variety of services, ranging from a special day class for toddlers, a school for children with developmental and behavioral issues, a feeding clinic and a huge range of inpatient and outpatient adult services as well. For well over two weeks Loki saw a number of specialists who performed an even greater variety of tests on him, some repeated from the US, some new. In short, the assessment was as follows: Loki's cognitive development is age appropriate for his chronological age (24+ months) and so is the development of his receptive language (understanding). Loki made immense strides in his expressive language development and was tested age appropriately as well. This is especially impressive since he [A] started talking very late and [B] is raised bilingual. The main issues were noted during the assessment with the OT (ergo therapeut) and PT (fysiotherapeut). Loki's gross motor skills (walking, climbing, sliding, biking, etc.) are somewhat delayed. Fine motor skills show some gaps with amazing skills in stringing beats or holding a pen, but difficulties placing blocks on top of one another and using his hands and wrists without placing his underarm on a services for support. In addition, all agreed that Loki needs a little more time to process questions and is easily distracted by sounds. These are not major concerns, but certainly something to be aware of and keep an eye on, as they can impact his learning in school when he is older.

Because Loki is basically doing "too well" for the Maartens clinic preschool, he won't be accepted at their school. The rehab doctor wants to see Loki again in 6 months and possibly repeat all the tests. In addition, they did offer physical therapy services but also felt that, at this point in time, we are offering Loki what he needs and they suspect it won't offer much extra. We are okay with the outcome, especially since Loki was referred to the Torteltuin, a special needs group within a regular day care. As this is extremely expensive, we applied for special subsidies, which we were assigned a few days ago. Two full days of Torteltuin or "Torteltown" as dad likes to call it, will be paid for as well as approximately 15 hours to pay for extra support at home. While this is all incredibly good news, it does come with extra paperwork and spending much time on the administration.

Loki started "Torteltown" last week and he absolutely loves it. He has no difficulties saying goodbye to me, he loves to share stories about whom he played with, "Jimmy is favorite" and he even has been taking naps from day one. Loki is so, so ready to engage with other children, discover new toys and build relationships with other adults. I am very grateful that this little guy is making this transition smooth and graceful, much more so than I can say about myself. I yet have to find my groove when Loki is having these new experiences. Enough work to do, but I feel restless and have a hard time focusing. The process of letting go has begun......and when Loki casually says "dag mama (bye mama)" and offers me his bolletje (little head) for a kiss when I leave, I do need to take a deep breath.

The day care placement comes with some increased worries with the regards to germs. Loki's doctor was somewhat hesitant but agreed that Loki is ready to venture out into the world and only time will tell how well Loki is able to process all the viruses and bacterias living in green snotty noses and such!

On the medical front, Loki has undergone a kidney ultrasound (all looks great) and two urinalyses, one of which showed only a very low occurrence of proteinuria (or protein leakage in urine) and for the second we could not even get numbers because the occurrence was too low. Very good news indeed. Bloodwork thus far shows that, with the higher fluid intake (50% more than a child his age and weight), there are no signs of dehydration, so we will continue the same water intake as we have had for a while now. Loki underwent a photo study to assess his reflux and, unlike what was seen a last spring, he actually does have delayed gastric emptying, whichfinally provides us with a clear explanation about why he has reflux. It is such a relief to have an answer after almost two years of struggling. The less good news here is that the medicine they prescribed (erythromycin) to help his stomach process the food a bit faster did not work. The good news? Loki has been throwing up significantly less and, with that, he is eating more. He loves to try a huge variety of foods, but he continues to have a hard time swallowing anything with texture. But hey, we are happy with baby steps (even though Loki said today "no, Loki not a baby").

We are waiting to be scheduled for 24 hour pH study in order to see whether a Nissen Fundoplication would still be an option. With the rate his vomiting is decreasing, though, we probably would not choose to move to fast in this direction. Finally, this week another visit to the St. Maartens Clinic to visit with the feeding team. We made some movies, filled out a sh&*#@ load of forms and handed out yet another huge packet of reports. Also good news from the therapists overthere; Loki qualifies for three one hour sessions a week to address oral motor delays. Happy and daunting all at the same time. As we need for me to work, and I need for me to work in an interesting setting, three visits a week is a bit much. At the same time, they were very committed to addressing this asap as Loki is interested and still able to learn new skills quickly.

Then, in February Loki will be seen by the Infant Follow up Clinic in Nijmegen, which means we finally meet the neonatologist who helped us with our transition to the Netherlands. I am excited to meet her and excited to show off our little wonderboy!

Last but certainly not least, some fun information from "the Lowlands": Despite a cold, which he hopefully shakes off soon, Loki is doing incredibly well in many regards. It seems he is growing older, wiser, naughtier, and funnier by the day. He has an incredible social memory (e.g. in knowing people's names) and he loves to read books. One of his current favorites is Curious George, and I am proud to share that he sits through the whole story listening and sometimes commenting on what he sees. Loki pretends his animals and dolls can see, hear, talk, and have feelings, which causes for very interesting and entertaining scenarios and dialog. Loki is talking up a storm, and no we are not tired of it yet, thanks for asking. He usually uses 3 to 5 word sentences but sometimes we hear 6 to 7 and even 8 word strings. It is incredibly funny to hear Loki explain the world to himself and direct us around, see him test our boundaries, and dance around the house using booty and shoulder. Loki makes up games such as "tickle my toe, my booty, my hair" and he cautiously steps outside to discover the world. Lately, he finds a lot very "eng" (scary), despite the fact that we do not emphasize the "eng" aspects of his and our world. He is cautious when it comes to physical activities. At the same time, though, he is incredibly eager to learn and explores relationships with other people. Loki loves other children and they often appear in his pretend play scenarios. Without us really putting much focus on it, Loki just started picking up colors, with pink and green being his favorite and most consistent colors (brown, blue, and orange are often correctly named as well). A few days ago Loki was looking at a magazine and said "W." When I looked up he indeed pointed at a W. He also seems to know the O and sometimes the I. But his all time favorite is the K from "mama Kakhalijn" (yes, the second K included).

We understand and are happy with the input and assessment of specialists, but our own not-so-humble opinion: Loki is an incredibly fun, sweet, smart, handsome, enthusiastic and social little man who brings us more and more joy and, yes, I barely dare say so, less and less reason to worry constantly!

May 2011 be as healthy and happy as can be!

Video: Loki in Indiana at Christmas

2011-01-17T11:18:00.003+01:00

Loki was remarkably entertained and entertaining during our recent Christmas trip to Indiana. While I try to be selective when editing videos, I couldn't keep this one any shorter. The first 14 minutes are various episodes of him dancing and serving dinner. The last few minutes, while not as funny, are of Loki's first time playing in snow.

I nominate Papaw Mark for best supporting actor in a comedy.

October through December video

2011-01-08T14:18:00.003+01:00

We are behind on video. This compilation is from the last few months, but not Christmas. Items include:

Loki gets a car from Bo for his birthday
Loki gets a hospital, also on his birthday, and remembers that Papaw works with helicopters
Around and round = "rond" (with a hard "r")
first birthday candles
second birthday candles and singing
on a rocking horse with a strange head and shoulder shake
vacuuming the floor (this is a bit loud)
dancing
dancing again
Cleaning = "schoonmaken" which sounds like "skone mahkuh"

Indiana photos

2011-01-01T23:47:00.000+01:00

We need to write an update about Loki, and post a few videos. For now, here are photos from our recent Christmas trip to Indiana.

With Nana and Papaw:

First real snow play:

Family:

Happy face:

Coloring with Dad:

Lamps!

Mom prepares gift cards for the Holiday Gift Fund:

Cooking up a storm:

Dinner with Nana and two dogs:

Making dumplings with Nana:

With Cousin Taylor:

Wind with Aunt Alice:

With Papaw:

Up with Taylor:

Cousin Chloe may be Loki's biggest fan:

Gifts included several furniture sets for Loki's faerie forest lodge:

Isn't it time for a shot?

With Amber:

With Great-great-aunt Nancy

A sense of Indiana, #1: Morning from our house.

A sense of Indiana, #2: Lots of lights:

Happy Holidays to all...

2010-12-26T03:30:00.007+01:00

Dear family and friends,

When we examine our lives as years, the last two have been remarkable for us. We spent Christmas 2008 in the Alta Bates NICU, looking forward to our tiny Loki coming home but not aware that kidney failure and feeding tubes were just around the corner. It was wonderful to spend the following Christmas at home with Loki. However, he needed much special care at that time, and we were exhausted.

Since then, Loki’s health has generally improved as the amount of care needed has decreased. His only surgery this year was to give him a new feeding tube, and when he was twice hospitalized for illness, each time was only for a couple days. Loki has also taken significant developmental steps. He is now a happy toddler, running, talking, playing more intricately, and especially laughing a lot. Despite the fact that we are not quite leading “normal parent” lives, we feel that we are inching towards some sort of normalcy.

Also this year, after talking about it for so long, we finally made the move to the Netherlands. This is obviously a big change in many ways. For example, we live in a small village outside of a medium-sized city instead of a major metropolitan area. Of course, this has been a large undertaking, consuming what little free time we had carved for ourselves. But it was clearly the right step, and it is wonderful living close to family.

As we are settling into our new lives in the Netherlands and as Loki’s care is getting easier, we very much look forward to a peaceful and calm 2011.

We thank you for your continued support and hope the upcoming year will bring you love and happiness.

With love and holiday greetings,

Loki
Mom
Dad

Report back from Team CA

2010-12-24T20:28:00.006+01:00

It happened..... yesterday on Thursday December 23rd Team CA; Mascha and Amy, dropped by the Alta Bates Summit Medical Center NICU and handed out the books and gift cards we collected through the Loki Sky and his NICU Friends' Holiday Fund. In the mean while we, dad, Loki and myself, were celebrating Christmas a day early with our family in Indiana. Despite the Christmas cheer and children running around playing with their new toys, I couldn't help but have my mind drift off, now and then, to the NICU and the exciting event happening at the same time. Needless to say, I was eagerly awaiting report from Mascha and Amy.

As expected, they received many positive responses. Both families and nurses expressed their gratitude and several nurses mentioned last year's drive. Both Mascha and Amy expressed their excitement in being part of the drop off. As I remember from last year, it feels quite amazing to handout gifts and gift cards, knowing that it positively impacts a family going through a rough time.

The drive came and went, and my mind is already moving towards next year. We made it happen once, we made it happen twice, we will make it happen again.... my dream for the new year? Turning the Loki Sky and his NICU Friends' Holiday fund into a non-profit. Oh, think of all the possibilities this would add.....

Christmas 2008:

Christmas 2009:

Christmas 2010:

The girls before drop off, 2010

64 books and cards neatly wrapped by Mascha and ready to go....

Funds closed.... but it will continue

2010-12-18T19:14:00.020+01:00

Dear family, friends, friends of family, family of friends and perhaps even strangers,

We did it, we reached our goal of $1600 on the closing day of the Loki Sky and his NICU Friends' Holiday Fund. In fact, we almost doubled our initial goal with the $3000 we received from you. I don't think it will be easy to convey in a written message how incredibly grateful we are with the support we have received. Who would have dared to dream this?

With the money we were able to buy 64 $20 gift cards, 64 books, 14 $100 and 1 $50 gift card. Every family spending the Holidays at the Alta Bates Summit Medical Center NICU this year, will receive a gift card and a book accompanied by a letter from Loki and his Friends. Our California team, Mascha and Amy, will be handing out the gifts next week, many thanks to them for taking this on.

The larger gift cards will be handed out by the social workers at the NICU to families who are in need of extra financial support in order to buy a car seat, stroller, crib or other necessities to take care of their baby once they are home.

For those who intended to donate but have not yet had the chance to do so, please don't worry, we will continue to send the money towards the NICU to ensure families who need it most will receive the extra support.

For now I just want to say I am extremely pleased with the outcome and am looking forward to seeing and sharing pictures from our CA team this week! It would not have been possible without the 47 families and/or individuals deciding to donate, it would not have been possible with you! THANK YOU!

Loki Sky and his NICU Friends


Michael and Wagner, 25 weeks	Anna, 31 weeks

Bennett, 31 weeks	Loki Sky, 24 weeks

Foxen, 30 weeks	Gabriella and Alexandra, 24 and 25 weeks

And then some.....

2010-12-10T13:00:00.006+01:00

As some of you know we recently spent three days in the hospital with a sick boy. Nothing compared to the18 weeks after birth. Still, three days filled with worries, very little sleep and a very sad and miserable boy.

It made me realize even more how happy I am that, despite our transatlantic move and all the hectic it brings along, the Loki Sky and his NICU Friends’ Holiday Fund is happening again.

And how…

Thus far 32 families have donated and another 8 promised to do so!
Thus far we collected $1678, $78 over target which means extra money goes to families who have more intense financial needs!
Thus far Loki has eight NICU friends actively participating in raising funds one way or another!
Thus far 64 books have been bought and wrapped!

To those who are helping us make it happen THANK YOU from the bottom of our hearts. You are touching lives of families struggling with their babies’ health. To those who sent us their best wishes THANK YOU for your encouraging words. And for those still planning on donating, we are looking forward to your contribution!

Just as a reminder, the closing date is December 18th. However, we would like to encourage those who are still interested in donating to do so before this date, for planning purposes, e.g. whose names to write in the “People who made this possible” column!

To find out how to donate please go to: http://babylokisky.blogspot.com/search?q=Holiday+Gift+Drive

With warmth and gratitude,

The families of Loki Sky and his friends

Home!

2010-12-08T22:11:00.000+01:00

After a bit more than 48 hours, Loki was released from the hospital. His fever greatly decreased today, and he was able to keep in about a half-day's worth of food. He was very happy to be home, as were we. We'll try to write a longer update soon.

Thanks for all your support during this latest challenge.

Hospital, again

2010-12-07T17:47:00.001+01:00

I wanted to post a video this week but Loki had other plans. He got a fever on Sunday, which continued. By Monday he was not really keeping food in. A doctor visit led to the hospital which led to one night here, and now another. His fever has been above 38.5, to 39.2C (101 to 102F). He is generally able to hold down water, and the doctors are not concerned about dehydration or kidney stress, based on a positive urine test. But he will need to stay until he can process food and his temperature lowers.

Of course, he is always a trickster. I planned on going to Amsterdam for work this week but that is now uncertain. And we all have plane tickets to Indiana for Monday.

We will update as we can.

Update: fever up to 40.2 C or 104.4 F.

October and November photos

2010-11-16T09:52:00.002+01:00

We've written little for two reasons. The good cause is that Loki generally has been doing well, and there is not much to report. Since moving, his development has really moved forward. He's a little boy now, running, talking with a vocabulary of over 270 words, sometimes even making 3 word sentences, being demanding, laughing, playing games, etc. This was very noticeable when we (finally) got our possessions from the US. These has been packed 10 weeks earlier, but he had clearly outgrown many of the toys.

The less good cause is that we are very busy with him, school, settling in, etc.

Among other things in these photos is Loki's second birthday. We kept the celebration small, as we were (and are) occupied with adjusting and settling. Although there are plenty of daily frustrations (both typical and "special"), Loki's birthday highlights that his health, growth, and happiness are blessings.

I will try to get some video together soon, and one of us will write about the many assessments, doctors, and such things.

Reading a birthday card, upside down:

Mom and I got him a train set. He pushes the cars around and says "chuckah chuckah chuckah":

Oma and Muus help blow out the candles:

Apron on:

Mitt and hat; ready to cook:

Loki loves the kitchen set to which Nana, Papaw, Oma H, Opa F, Tante Marieke, and Oom Martin all contributed:

Before it was cold and grey, we used our bike trailer:

And biked to the old walled village of Kranenberg, Germany:

We also walked through the woods:

Scarf:

Eating:

Hat:

A typical evening:

Finally, here are a few from Kyra's B-day party that she sent over. With Muus:

With Lova:

Drumming:

Matching:

Loki Sky and his NICU Friends' Holiday Gift Fund

2010-11-04T21:37:00.000+01:00

In October 2008 Loki Sky was born at 24 weeks gestation, weighing only 1 lb 5 oz (610 grams). Loki and his family “celebrated” the Holidays in the hospital. After three surgeries and four months in the hospital, Loki came home. Grateful for what the NICU meant to them, the family wanted to give something back. Remembering the warm notes from strangers and knit hats for Loki during the Holidays season, a Holiday gift drive was their means of sharing their gratitude. In 2009, Loki’s family and friends collected over $1500 in gift cards and many gifts, given as generous gift bags for each of the babies then in the Alta Bates NICU in Berkeley, California.

A small gesture truly can help a family through an incredibly difficult time.… We know!

A note From Loki’s family:

Dear Family and Friends,

Not only did you support us through two challenging years, you also helped us make the gift drive a huge success in 2009. Although two years seem a long time ago, it feels like yesterday to us that we spent the majority of our time bedside with Loki in the NICU. We will be forever grateful for the amazing support and medical care Loki received. This is our way to turn a challenging experience into a positive one. Can you help us honor Loki’s strength and his fight to survive his extreme premature birth by sending an uplifting gesture to a NICU family?

How you can help:

For this year’s drive we are collecting financial donations in order to purchase gift certificates from Babies R’ Us. With this card the family can buy the necessities to prepare for their baby’s homecoming. In addition, we will buy a small story book for each parent to enjoy with their baby. Anything helps, so please don’t be shy if a dollar is what you can spare. We are happy and grateful with any donation!

From the Internet:

Click this button and use a credit card or Paypal account to send money:
From the US:

Please mail checks in name of: Kathalijn Sprenger, 405 Eastview Drive, Bedford, IN 47421. Be sure to note "Loki and Friends" in the memo.

From the Netherlands:

Maak geld over op rekening nummer 61 57 69 152 t.n.v. K.C. Sprenger.

With immense gratitude,

Loki Sky, Foxen, Anna, and more of their friends

2 years old

2010-10-17T22:10:00.001+02:00

Today, two years ago, was a Friday. We spent it at Alta Bates Hospital knowing that soon or sooner we would become parents of a preemie boy. The cramps which I had taken for contractions were, according to the nurses just "uteran irritabilties." Sure enough, the next day, which obviously was a Saturday as Satrudays tend to follow Fridays, our little guy needed to come out... ASAP.

Rushed in to the operating room (you all know the story by now) Loki Sky was born at 24 weeks and 3 days (or perhaps a little earlier even), only 60% through a typical pregancy. He showed no respiratory effort, he was quiet, and I could not see him. Amy Winehouse's "You Know I'm No Good" was playing on the iPod of the anesthesiologist. The room felt cold and the lights in the room looked cold. Everything I never imagined the birth of our beautiful son to be like... yet now making perfect sense in our birth-story, at this point in time.

And here we are, two years later, on the eve of Loki's second birthday. Loki has taken us along some scary paths on his journey into and through this world, and continues to surprise us now and then. But I guess that is what we asked for when we named him Loki, after the Norse deity of mischief. Of course, these moments around his birthday call for some pondering and reflecting on our road into parenthood. It is almost needless to say how proud and delighted we are with our boy and all that he is. But I want to say it anyway, again and again and again. I do not ever want to take for granted that our little 610 gram miracle survived his early birth, including all the scary preemie "bumps in the road," renal failure, and six surgeries. I want to celebrate his path, his life, and the inspiring human being that he is.

We all know Loki wouldn't be here if it were not for the amazing medical care provided by many skilled nurses and doctors. Even more so, I believe that he wouldn't be here if it wasn't for himself: Mr. Loki Sky, two year old rascal shaking up our worlds, since 19 weeks into my pregnancy. Strong, determined, smart, happy and powerful little man: we wish you a wonderful second birthday. We are so grateful you are here to celebrate life with us. We are so grateful that it is you who choose us to be his parents.

Then:

Today, with his new car sent by Bo:

September photos + video

2010-10-17T00:31:00.000+02:00

Walking near our home:

Helping Dad with Dutch:

Flowers for Mama:

The two girls across the street from Oma's house absolutely love Loki. They often stop by and ask if he is available to play:

At Kyra and Erwin's farm, during the former's birthday party on their bamboo farm:

While there, he played with their son, Muus, who wore his wooden shoes and pajamas that matched Loki's (including the Jip and Janneke characters on the front):

Loki's wooden shoes:

With Patrick and Lea, who visited from California:

Loki took quite a liking to Lea:

We've not posted a video in a couple months. This one includes clips from the last 8 weeks or so, and is in roughly chronological order. In a couple places, we try to get Loki to sing along, which he often does much better than here on camera. He shows off his wooden shoes. He dances to Manu Chao. He plays with the daughter of Mom's close friend (his "cousin"). I apologize that one clip is 90 degrees off. I've still not figured out how to do that right.

The walking, the talking, goodbye and hello.....

2010-10-04T09:30:00.000+02:00

I started writing this blog post in July in our apartment in Oakland. I continued writing early September in the guestroom at Omi and Opi 's, and I finish it in October, from the couch in our own living room in Berg en Dal.

Our lives have been filled with excitement, hectic goodbyes and hellos for over three months now. We shared wonderful moments with friends in the Bay Area and had tons of support when we really needed it. We are now spending great time with family and a few friends, while have received an amazing amount of support painting our new home. A big "Thank You" to Opa and Oma, Marieke, and Martin for helping us make this house our own. And a big "Thank You" to Opi and Omi for helping out with the little guy and organizing utilities, getting us (re)acquainted with the structure of this country, and chauffeuring us around.

Meanwhile, Loki moves through his days as always. He plays with friends; he loves the "meisjes" [girls] from across the street who, with their 6 and 8 years of life experience, are incredibly interesting to him. Loki was nearly cuddled, squeezed and kissed to death by Muus and Lova [Kyra's kids] on our second birthday party in as many weeks, a few weeks ago.

During our last months in the US we had the pleasure of saying goodbye to all Loki's specialists while receiving the last US treatments and tests. A quick summary for those who are eager to know:

Gastroenterologist Doctor Rhee just got back from her own maternity leave, and we were very excited to be able to say goodbye and thank her for all her help. She put Loki on a low dosage of erythromycin hoings that this would help him with the motility of the GI tract. [This makes the fourth current prescription drug.] Although the gastric emptying study in spring did not show any issues, she agreed that the amount of fluid they gave him during the test may not have been enough to observe the issue. No huge change thus far, but Loki's new doctor here in the Netherlands thought the erythromycin dose was a bit low.
Urologist Doctor Baskin was incredibly happy with Loki's kidney ultrasound. Despite some mild renal calcinosis.
Nephrologist Doctor Lo was concerned about the ongoing proteinuria. Despite his low-protein diet, Loki's kidney continues to leak protein. Although the protein / creatinine ratio has been below 0.5, which is the baseline the doctor is willing to accept without intervention, it has swung up and down quite a bit. The last test came back 2.8, which it has not been since last July 2009. Her suggestion is a urine test every two months to monitor the leakage. If the ratio continues to be above 0.5 she would typically start ACE inhibitors. This is one of the main issues the doctors here in the Netherlands will monitor as well. On the other hand, the blood urea nitrogen [BUN] has gone down with the increased water intake (1.5 liter per day instead of the normal 1 liter). Time will tell as to why the kidney leaks protein and whether this will cause bigger issues in the future.
Ophthalmologist Doctor William Good was happy with Loki's eyes but did notice nearsightedness of -1.25 in both eyes. His suggestion was to see a specialist in a year.
The feeding clinic team at California Pacific Medical Center has been very pleased with Loki's progress in oral motor skills and decrease in oral aversions. However, his lack of weight gain has been a little bit surprising to them, as it also has been to Dr. Rhee and to our new pediatrician here in the Netherlands. Loki's oral motor skills are not mature for his age, but compared to other children with similar issues. In fact, he had made a huge amount of progress. Ongoing services ares still warranted.
The Infant Follow-up Clinic assessment came back quite good. However, I feel that the psychologist rushed Loki through some test items which he then failed, and that she assigned him some skills that are beyond his knowledge. According to the Bayley Scales of Infant Development, at 18 months adjusted age, Loki's receptive language skills function at 29 months, whereas his cognition showed skills at 20 months. (He did not cooperate for most of the tasks). That big of a difference between those domains at this age is unlikely. I think the truth lies somewhere in between. Loki's gross motor skills scored 19 months and both his fine motor skills and expressive language showed skills at 23 months. However, the speech evaluation (REEL-3) showed expressive language skills at 19 months and receptive language at 18 months: rather different numbers. We are simply quite impressed with Loki's development, and regardless of some scattered skills and minor delays, he is doing remarkably well.

Here in the Netherlands, we have had two appointments with Loki's "child doctor" (more specialized than a pediatrician, yet less than the specialists). Dr. Draaisma took his time listening to us when we shared Loki's history and he seemed to take it very seriously. His overall judgement was that most medicine dosages were too low. Thus, he wants to increase and see if the [everlasting] vomiting disappears. Loki will be referred to the Sint Maartenskliniek ("Saint Martin's Clinic"), a rehab center for kids with day care, preschool, and supposedly amazing feeding clinic that happens to be very close to our new residence. Unfortunately Dr. Draaisma does not think Loki is ready to be around too many kids (i.e. germs), and thus this transition to there won't happen until late winter or early spring.

Loki unfortunately lost almost a kilo over the past 3 months, so we had to go back up to his full 1000 calorie intake per day by feeding tube. We are not sure whether he eats less by mouth than we think, or if the increased reflux causes uncontrolled loss of calories. However, when Loki is surrounded by other kids eating, he eats significantly better. For example, a week ago we had a family gathering where "monkey see, monkey do" was quite apparent. His cousins were eating and so was he: yogurt, soup, sausage, olives, all the yummy foods.

Of course, we did quickly pick up a cold, and unfortunately have all felt rather exhausted and icky. Loki battled it well with some extra medication, but has had an ongoing low grade fever for three weeks now. We have faith that, slowly but surely, he will get better in overcoming the simple viruses without having to work so hard, but we are grateful he is doing as well as he is at the moment.

Loki soaks in his new life and despite being a bit clingier and showing some expected regression in his development. (We're back to turning on and off lamps all day long.) He is showing ones again to be a flexible and sweet little guy.

Although most strangers would not understand what Loki is trying to say, he has a huge list of words/labels he consistently assigns to people/objects/actions. Here are some consistently used labels (mostly Dutch but some English): ball, bell, baby, beer (that's Dutch for bear, not the drink), uil, giraffe, buik, nek, neus, lopen, varen, vliegen. vliegtuig, bus, fiets, hoog, fietsen, bus, vrachtwagen, bank, eten, apple, appelboter, pesto, avocado, aardbei, cracker, cookie, melk, fles, mes, fork, speen, cup, stoel, zit, slapen, kijken, blanket, wagen, car/auto, kralen, krijtje, rijden, emmer, doggy, kitty cat, turtle, fish, wash, sun, maan, star, varken, koe, duckie, Elmo, Nijntje, sock, shoe/schoen, stoplicht, stoppen, gaan, deur, lamp, fan, draaien, kaars, kaas, spuit, water, splash, nat, burp, luier, plassen, poep, douche, telephone, werken, laptop, nee, mama, daddy, ja, open, dicht, ringen, cowboy, number, oh no, aan, uit, in, wc, knikker, glasses, bath, bubble, schaap, froggie, muis, meer, klaar, oren, ogen, mond, boos, night night, comb, boom, flower, sunny, warm, etc.

Loki imitates the last word of a sentence and finishes sentences in about six songs, and answers questions such as "when it rains outside it is..... (wet)."

My personal favorite is when Loki discovered part of the couch felt warm he said "warm." When I asked him why the couch was warm he looked at it, saw the sunlight reflected on, looked outside, pointed at the sun, and said "sun."

We miss our old life in the Bay Area, yet are excited about our new life here in the Netherlands. We are looking forward to settling into our new home more when our freight arrives in a month or so.

August photos: From California to the Netherlands

2010-09-06T22:39:00.000+02:00

We were quite busy in August. We moved to the Netherlands. We'll have a health / development / etc. write up later, and maybe a video. For now, photos.

At the Dutch consulate in San Francisco, becoming officially Dutch:

Paint:

Misty, Nicole, Allison, and Peggy from the Alta Bates NICU took Mom out for a great lunch, as a goodbye gift for her volunteer work:

While there, they unexpectedly ran into two of Loki's doctors from the AB NICU, Dr. Dudell (L), and Dr. Uzowicz (R) as well as the latter's niece. They offered to take Loki on a walk so Mom could have an easy lunch:

Loki tried chocolate there:

Before we left, Loki visited friends. OT Heather:

His favorite sitter, Bo:

Fin:

Eric and Oscar:

Graciela:

Dr. Abbott, his pediatrician:

Professor Bear, a gift from my advisor for my Master's research:

And of course Margaret. Mom and Loki stayed at her place for a couple days while I wrapped things up. They went to the Discovery Museum in Sausalito, Marin County:

Loki had lots of fun there:

Goodbye Golden Gate Bridge:

Off to the Netherlands! At his (soon to be) new house:

In the back garden of Oma Heleen and Opa Frits, where we are staying for a couple weeks:

Gardening:

Dinner just down the road at Tante Marieke's, Mom's sister:

Loki was not so sure about chocolate ice cream:

Taking a break from painting and cleaning the new place:

July photos

2010-08-03T07:40:00.000+02:00

Happy:

With Mom:

At this moment, we asked Loki whether he wanted to walk with us or be carried. He thought for a moment and said "nee nee" (no no). This image captures the realization of independence.

With Dad at Lake Merritt, near our house:

Hat:

Watching the Dutch (orange) almost win the World Cup:

Walking in San Francisco with our dear friend Courtney:

I (Dad) was recently out of town for work, and Mom took the opportunity to bravely fly alone with Loki to visit family. This is on the beach near Los Angeles with her cousin Nicole and Nicole's son (Loki's second cousin) Sebastian:

With Anna, after the pool:

Again with Anna:

Playing with the twins:

With OT Stephanie:

We recently got, as a gift, a special doll that was custom-made to be Loki's size at birth. The idea is that this will help Loki understand what he has been through. For size comparison, here is Loki with the doll:

And here is the preemie doll with a typical newborn baby outfit and with Loki's doll, who is wearing one of Loki's first outfits:

Here are a few leftover photos from the High Sierra Music Festival. At the Kids' Zone:

Loki and Foxen had a teamwork system for operating a water sprayer:

Loki and Foxen joined by Laura and Harper:

Returning in the RV:

Our move

2010-07-16T06:45:00.000+02:00

Dear friends and family:

It is with somewhat mixed feelings that we announce our upcoming move to the Netherlands--something many of you already know. We have been talking about this in various forms since before Mom came to the US over eight years ago. But the prospect takes a whole new shape now that the date is unexpectedly coming faster than we anticipated. Furthermore, our lives' circumstances are much different than they were in 2002, to say the least.

The short-term justification is that Dad will return to school, on track to get his Ph.D. in what Americans would call technology or environmental policy. This will initially be as a Fulbright Fellow, at the University of Tilburg.

However, the overwhelming reason to move is for Loki. No matter how we balance other potential advantages and disadvantages, our belief that he will be better off in the Netherlands than in California outweighs everything else.

In the realm of details: we will leave at the end of August, and will live in the city of Nijmegen, where Mom's mother, step-father, and sister are. There are many details to arrange between now and then.

Californians: Ideally, we'd spend quality time with you all before we leave. Realistically, we have little free time after taking care of Loki and going to work, much less after arranging a move. We plan to host a going-away poolside party in our building on the afternoon of Sunday, August 15. We'll send more details later. We hope you can make it.

Nederlanders: Thank you for your patience. We realize that we originally said that we would be back sooner. And thank you for maintaining close ties with us, for so long, while we were so far away. It is reassuring to know that, after traveling thousands of miles, we will be surrounded by familiar faces.

We will miss the US. We will miss California. We will miss the Bay Area. We will miss our friends here. But we are very much looking forward to new experiences and opportunities, and seeing more of our Dutch friends and family.

This is not an easy decision or step, but it certainly is exciting.

Dad has decided to write a public journal of his experience as an American living abroad. This will be at http://jrabroad.wordpress.com/ . Loki's blog has been quite a success. But this will be a different topic, in a different location.

Onward,

Mom, Dad, Loki

Loki's first music festival: photos and videos

2010-07-14T17:17:00.000+02:00

Last week, Loki attended his first music festival. Mom and I have went to the High Sierra Music Festival every Fourth of July weekend for ten years. We had to skip last year, of course. But this year, we splurged on renting a big RV motor home. We met up with Opa and Oma there in the northern Sierra Nevada mountains, and enjoyed four days of music. Loki was great, enjoying the sights and sounds while in good health. The grandparents really stepped up, and allowed us to go see the headliners three of the four evenings.

We'll write more about Loki's health later. For now, I'll say that he is doing very well. In fact, he is sleeping through the night with very little grunting, crying, or coughing for the first time. (Thus, we sleep more!) We are curious if this will be the case when we phase out the Flovent.

Getting in the festival mood with Dad's beer:

Applaud?:

When a song ended, Loki would often do the sign for "more," which is touching the fingers of each hand together, like this:

His favorite toy was his squeeze-and-spray bottle:

For Opa too:

Funny:

Laughs with Mom:

Stealing Mom's entire dinner in one bite:

Walking with Oma and Opa:

Cool:

Loki borrowed a neighbor's castle tent:

Loki liked bathing in the warm sun:

Foxen, Loki's fellow graduate of Alta Bates NICU and his best buddy, attended with his family:

Playing on the stairs with Foxen:

With Dad:

Mom:

Cruising the strip:

Good night, High Sierra:

In this video, Loki plays with Foxen, and walks with Oma and Opa.

In this second video, Loki tries to eat Mom's burrito, applauds at the end of a song, and plays in the bath.

Home!

2010-06-26T05:45:00.000+02:00

We are all home, and although we returned a little late (4:30 PM) it is wonderful to be here. We never received a diagnosis for Loki, but I never heard of the results of the virus test. I still suspect a respiratory virus. We hope that he sleeps well tonight.

I will add, though, that Loki is now on eight drugs daily! Zantac (ranitidine) and Prevacid (Lansoprazole) for reflux; Flovent (fluticasone, a steroid), Xopenex (Levalbuterol), and Prednisolone (another steroid) for his breathing; Augmentin (Amoxicillin and Clavulanic Acid, antibiotics) for his ear and g-tube site infections; bacitracin ointment for his g-tube site infection; and a vitamin. About half of these should be stopped in the next week or three.

Thanks for all your words of support during this latest medical incident!

Quick Thursday evening update

2010-06-25T07:08:00.000+02:00

Loki is gradually doing better but will stay in the hospital at least one more night. He barely coughed today, except a bit while sleeping. It remains unclear to what extent his cough is gone, versus just being suppressed by albuterol. The albuterol doses were reduced from every three to every four hours. We'll be sent home with some to use as needed. Loki does not enjoy receiving it. We will put a little mask over his mouth and nose, and he must breathe the gas for ten seconds, four times per dose.

There is still no diagnosis, but a respiratory virus is likely. In a strange way, we hope it is a relatively severe illness, like respiratory syncytial virus. If this is how he responds to a common chest cold, then we are in for trouble. But if this is RSV or similar, then his response is more typical.

At the hospital, he also received a daily steroid and a new antibiotic for his ear and g-tube site infections. This is all in addition to his two medicines to fight his reflux.

I spent most of the day at the hospital with Loki, while Mom was at home getting some rest. She is at the hospital now doing another overnight. This is not an ideal wedding anniversary, but I suppose we should not be surprised by our Trickster. I share Mom's sentiments. While it is reassuring that we do well as a couple during these challenging times, I wish we could just have some normal time.

Today Luna visited and dropped off a huge amount of delicious food, coffee, magazines,and books and balloons for Loki. She went above and beyond, and really brightened our day. Thanks!

Hanging in there

2010-06-24T19:39:00.000+02:00

Loki is going strong at Children's Hospital Oakland. Albuterol every 3 hours, steroids and antibiotics seem to take their affect. Loki is tired yet hyper thanks to the adrenaline in albuterol. I wish we had a camera yesterday evening because it would have been a movie worth watching. Loki was WILD and hilarious. He moved, screamed, laughed, jumped, talked, kicked and pushed buttons non-stop for about an hour. We got a quick look into the kitchen called ADHD. WOW......

We have no idea yet as to when Loki will come home. We are waiting on test results and he needs to be able to handle albuterol every 4 instead of 3 hours before he can be released. Please, please let this be soon.

The emergency room stay was intense as it lasted 10 hours and Loki got scarily ill for a bit there. We found out there were some shootings (part of recent series of Oakland teenage shootouts) so obviously Loki was not a high priority. After
moving to the 4th floor our stay has been pretty good though. We have had great nurses, nice doctors and it is pretty quiet.

Today also marks our 8th wedding anniversary. I would have loved a date with my handsome spouse, yet we are taking shifts in the hospital.

Taking shifts is something we have gotten really good at. We have shifts for feeding, sleeping and yet again for staying in the hospital. How I would love to spend some relaxed time together with the man I married eight years ago. We promised to stick together in sickness and in health, during the easy and the hard times. We promised to support each other to grow together and as individuals. We promised to pay attention to ourselves, so we could pay better attention to one another. I think we are doing pretty good job at it. It has not been an easy year and it is not easy now. Whenever we think we soon may be able to let go our guards and relax, we are quickly shaken up by our reality that is Loki's health.

However, I think we are hanging in there. I wish though we could move on from hanging in there to doing well, or great or even fantastic. I wish we could have really celebrated father's day and my birthday. I wish we could happily prepare our trip to High Sierra Music Festival next week and I wish we could just be..... just be the people we are when we are not constantly under so much stress.

I am very proud at how we are able to handle our situation and still love each other so very much. We generally get along so well and I could not imagine anyone else I could move through this much stress with relatively happily. But man am I tired!

I hope we get a chance soon to sit down and enjoy each others' company for a few hours without worries, without interruptions and without needing to remind ourselves to take a deep breath. I hope we can celebrate 8 strong years together, reflect upon the paths we have wandered and fantasize about the exciting adventures that lie ahead.

I am going to take a nap as my two favorite men hangout in the isolation room at CHO!

Back in the hospital!

2010-06-24T09:15:00.000+02:00

Loki was admitted to the hospital today for a serious cough. We still do not know what the cause is. He is spending at least one night there.

He always coughs quite a bit from his reflux, but during the weekend his cough became more severe and different, wetter and more "hacky." On Monday, Mom took him to the pediatrician, who told her that Loki likely contracted something that has been circulating among kids, whose coughs are lasting for weeks.

The situation became generally worse. Mom has been awake half of each night comforting Loki. This morning (Wednesday) she again took him to the pediatrician, who advised that he go directly to the emergency room. So they go and spend nine or ten hours in a private room within the emergency department at Children's Hospital Oakland. He was later officially admitted into an isolation room in the intensive care nursery. This hospital is the place of Loki's second of three NICUs and where he spent Halloween.We don't like it much, but it is conveniently close to our house.

Loki did not respond much to an initial one-hour treatment of albuterol delivered as a gas. But a second one, combined with suctioning out a significant amount of mucous from his nose, significantly reduced his coughing. (Albuterol is a form of adrenaline, and so Loki became very energetic after each session.)

An initial suspicion was whooping cough (or pertussis), which has been very bad here lately. Although Loki recently received a vaccine for this, kids have been known to get it nevertheless. So a blood sample will be cultured for this, and we'll know in a few days.

Loki also had a chest x-ray done, and his basic blood work came back "nearly perfect," making a problem with his kidney unlikely. He will likely have a test for a number of viruses.

Simultaneous with this, on the advice of a doctor, we recently tried reducing Loki's dosage of zantac, one of his two medicines for reflux, This experiment gave negative results: his reflux became more severe. Also, the site of his feeding tube became infected, and Loki was put on antibiotics. To top it off, the doctors today discovered an ear infection. All this things make each other more likely, and more severe.

Because Loki may have something contagious, he got his own room, both in the emergency room and in the intensive care nursery. That's a nice side benefit.

Mom is spending tonight with him. I'll go and relieve her of duty in the morning.

Good news and concerns

2010-06-21T01:16:00.000+02:00

Loki has underwent some changes in his development, diet, and health. The news is mixed.

First, Loki took his first real steps just after two of his Dutch grandparents arrived (Opa F. and Oma H.). This has been a long time coming, but regardless is very exciting.

The good news is that Loki's tube feeding appears to have turned a corner. For about four months, we were feeding him Compleat Pediatric, a liquid food of real ingredients designed for g-tubes. A few weeks ago, on the advice of fellow feeding tube parents, Mom finally attempted to make a batch of homemade food. We had earlier received a book from another g-tube parent, but thus far we had been intimidated by the process. We are generally able to get this new food into Loki much faster, and he throws up much less. This means more sleep for us, and less cleaning of dirty laundry. Preparing the food is a lot of work, and bits of food get stuck in his tube's extension. We've borrowed a better immersion blender; that may do the trick.

We've actually had some particularly good eating sessions lately. This may be related to his improved tube feeding. Instead of an almost continuous feeding (shot every 10 to 15 minutes), or six or five tube "meals" (our pattern for a month or two), the new food allows us to have only three, larger feedings. Loki thus gets hungry between feedings, and eats better. We also continue to improve our understanding of what he likes to eat. He loves pesto by the spoonful, for example. So we mixed it with some other foods, and he eats it up reasonably well.

Unfortunately, over the past five days Loki's tolerance has decreased and vomiting has increased again, probably due to the lower dosage of Zantac we give him per G.I. doctor's order. The dosage has gone back up. Sadly, since the recent vomiting spells he has lost almost 1 kg (2.2 lbs).

Also, Friday night Loki was fussy and woke up with a fever of 38.8 C (101.8 F). At the end of the day it had gone up to 39.8 C (102.9 F). His mic-key button site is quite red. The doctor suspects an infection. Loki was started on antibiotics yesterday.

Loki recently had both his upper GI series (which we reported on previously) and swallow study. They were quick yet traumatic. Loki cried, screamed and kicked his arms and legs in the air, all to no avail. The barium was pushed in and no issues were detected. Mom writes, "I must say I continue to mentally challenge the process though. Most of the barium ended up on the Doctor's pants. Which doctor does not know how to manage the most common of all feeding tubes? Oh well."

The other challenging news is that, after a routine kidney examination, Loki was found to have elevated protein in his urine and elevated blood urea nitrogen (BUN) levels in his blood. Protein initially measured 1.2 but went down to 0.7 three days later. BUN is normally 10 to 15; Loki's was 17. Mom also wrote about this in February. High protein could imply either:

A poorly functioning kidney caused by...

wearing down of filtration units. Premature infants are born with less units than normal because the kidney is not optimally developed at birth. In addition, Loki only has one kidney, which has experienced significant trauma.
increased hydronephrosis due to another obstruction. His large urine output and bloodwork indicates that this is unlikely.
nephrocalcinosis (calcium build up due to dehydration).

And / or too much protein in his diet.

With the help of the Internet, we determined that Loki's blenderized food was providing him with 39 g protein per day, but he only needs 14 g. So while a normal pair of kidneys can handle a high protein diet, we need to be careful with him. We have been researching the web, shopping for new foods, and talking to the nutritionist to develop a lot protein diet, both blenderized and spoon-fed. The doctor assumes the high protein diet is the most likely explanation. Thus, we are adjusting his diet for now and will do a urine test next month.

When high BUN is not accompanied by elevated creatinine, the most likely explanation is suboptimal urine concentration. Loki's kidney produces too much watery urine, therefore unable to appropriately remove electrolytes from his system. Despite several overflow diapers per day, Loki needs increased water intake to "keep up" with large urine production. Instead of the 25% extra we were giving him we have gone up to almost 50% extra water for a child his weight (1.5 liter of water per day in addition to his food).

The last bit of news is that Loki is coughing a lot at night. This is not uncommon in kids with mic-key buttons, but for whatever reason we have been lucky until now. Our best guess as to the cause is that lack of fluid intake by mouth may cause mucus build up in his esophagus, which starts to bother him when he lies down. As with his previous spell of night grunting, this is worse later, from 4 to 7 AM. We often get up, pat his chest rather hard, and comfort him, which helps him fall back asleep.

Despite health issues, Loki continues to be a happy, funny toddler who cracks himself up when he burps. He is a cuddle bum, loves his babies, cars, pens and bubbles. He is slowly talking more, expanding his spoken vocabulary including new words "luier" (diaper) and "wagon."

Loki walks! And other May & June photos & videos

2010-06-19T18:03:00.000+02:00

We have a fairly long written Loki update almost ready. For now, photos and video. As always, those who get this by email will need to click the headline or this link to view the video.

The big news is that Loki is walking. This began just hours after Mom's mom and step-father (Oma and Opa) arrived. That's the first part of this video. The clips are then: playing with his water bottle while out to eat on a hot day with the Arbuckles, drawing (while a bit fussy), playing with our cat, playing with Dad, and discovering the couch sent by Nana and Papaw.

Loki delivers the couch. "Where do ya want me to put this thing?"

The couch from Nana and Papaw is nice!

Chillin' on the couch. His doll, Ole, next to him is wearing one of Loki's first outfits, which was way too large when he first wore it. But their shirts match!

I am quite impressed with how quickly Loki (and I suppose most babies) learn from observing behaviors such as talking on the phone:

Hair and bunnies:

Loki now rides in the stroller on his knees, resting his arms on the bar and bag in front. Sometimes he sleeps like this.

Let's see... the flute goes with the cheese:

Double tooth brushing:

With the Arbuckles:

Sharing a letter

2010-06-13T05:13:00.000+02:00

I know a wonderful family. They have an amazing son who has cardiomyopathy, which means he is in heart failure. Their little guy, Simon, became very, very ill just a few months before Loki was born. Reading their blog has been a major inspiration and has shown me that parents, with an incredible amount of love for one another as well as their child, can practically manage any challenging situation. A few weeks ago we happened to bump into this family. Their handsome and charismatic little guy immediately charmed both Loki and myself with his huge, bright eyes. His mothers were wonderfully supportive of the difficulties we have faced with Loki's feedings and his tube. In addition to handing us some really useful supplies for Loki's mic-key button they gave me the advice that completely changed our lives; make home made blenderized food. I kid you not, since we started making our food at home Loki has barely vomited, he tolerates 60 cc's at once and he is eating more by mouth!! Needless to say, we are incredibly grateful!

I do not want to turn Loki's blog into a political sounding board. But I do want to share a letter that one of Simon's mother's wrote. It has deeply touched me. I have worked with many families living under incredibly difficult circumstances. I can attest to the fact that this family has a gift of making life beautiful, safe and happy for their son, despite his serious health issues. I hope for many more years of following their blog and I invite you to check it out as well: www.simonlev.blogspot.com

Below please find Jamie's letter:

Hello,

You don’t know me but I walk past your house 3-4 days a week on my break from work. Every time, I'm struck by your Yes on Prop 8 sticker. I'm guessing this may not be your intention, but every time I see your sticker, it feels like someone is standing in my face, yelling "I hate you and I hate your family”. I wanted to let you know what kind of an impact it has.

I thought the most constructive thing to do would be to take this opportunity to introduce myself. I'm guessing (maybe incorrectly) that you don't know any Gay, Lesbian, Bisexual or Transgender (LGBT) people and in particular LGBT parents. I have found that actually meeting or knowing about a real live person who is happy, healthy and well adjusted AND gay can sometimes change things for people who seem to feel the way your family does about people like me.

I can tell from your house that you have children. I am also a parent and the issue of Proposition 8 has taken on a whole new meaning for me since having my son, Simon.

I have known I was a lesbian since I was 17. When I came out to my family, they were distressed because they were very concerned for my safety. They knew that people who have been taught to be homophobic do and say terrible things to people like me. However, my entire family including my parents and grandparents, were also very clear that they loved me unconditionally and would support me in leading the happiest, healthiest, most fulfilling life I could live, even if I were gay. That meant more to me than probably anything in my life.

I met my wife, Laura, over 8 years ago through a mutual friend. We were good friends for some time before we fell in love. A year and a half later, when Laura asked me to marry her on the Ponte Neuf bridge in Paris with an antique diamond ring, I gleefully said yes. Our family and friends were thrilled and we had a large, beautiful wedding in Tilden Park, at the Brazil Building with over 120 family and friends.

Laura has known her whole life that she wanted to be a parent. I was a little more reserved about the idea, but after overcoming my fears that I would not be the kind of present, attentive parent I wanted to be, we moved forward with our process. A year and a half after we were married, Laura gave birth to our son, Simon.

Simon became gravely ill with a serious heart condition when he was almost four months old. He was in the ICU at Children’s Hospital Oakland for four months and nearly died numerous times. One of the things that sustained us as parents through that time was love. Love for each other, love for Simon and the love that so many other people showed us. Our doctors and nurses, friends of friends and relatives of friends prayed for us, sent us emails, gave us hugs, brought Simon toys and supported us as a family.

We were later shocked to learn that many of the people who were so kind to us in the hospital were evangelical Christians. They were able to treat us with kindness, love and compassion AND be Christian. They supported us as a family even though they may have had issues with us being gay, because they knew it was the truly good and kind thing to do. They did what Jesus would have done.

Which brings me to Proposition 8.

The only thing Proposition 8 and policies like it does is hurt families. It doesn't do anything to strengthen your family or those of any other straight people. It just hurts families like mine, especially families with children.

My being gay and being in a happy, healthy relationship doesn’t actually hurt other people. It won’t make your kids gay and it won’t make my kid gay. Anyone who has spent any amount of quality time with gay people knows this. Prop 8 isn’t going to make it any less likely that someone is gay or that gay people will create families together. Instead, it just makes us sad and feel scared that some day someone may hurt us or our families. And it makes the people that love us feel the same way. Fear and hurt are the opposite things that I would I hope loving Christian people like the ones that you seem to be, to bring to the world.

I am lucky enough to live in a state that has some policies that help me provide for and protect my family. I am the sole breadwinner right now because Simon is too medically fragile to be in day care so Laura stays home with him. In other states with policies that seek to deny LGBT people the basic privileges straight people have, I might have been denied the right to visit my own son in the hospital while he appeared to be dying or he might be denied health insurance through me. That is simply cruel.

Denying Gay, Lesbian, Bisexual and Transgender people the same privileges heterosexual people have doesn't actually help anyone. It just creates a culture in which people are fired, injured, killed and isolated for being gay. I know the goal of these types of policies is to somehow strengthen society but what they really do is divide us and hurt us. All of us. It hurts my parents when someone treats me badly for being gay and it will hurt my son when someone is cruel to his parents for being who they were born to be. It hurts me and I venture to say that in some ways, it also hurts you.

In the spirit of love, I want to reach out and invite you to learn about my family. We have a blog that we started at simonlev.blogspot.com that tells our story about living as a family with a critically ill child. You will probably laugh, you will probably cry and you may find that you come to see us as three of God's perfect creatures.

Presents for the littlest patients

2010-05-26T06:35:00.000+02:00

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!

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

2010-05-23T18:26:00.000+02:00

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!

Grandma Lanette

2010-05-17T04:35:00.001+02:00

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!

Videos and photos, April and May

2010-05-13T07:11:00.000+02:00

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:

Spike:

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:

Indiana photos

2010-04-30T09:26:00.000+02:00

Here are many photos from Indiana. As I said, Loki met lots of relatives. We tried to get photos of him with all of them, but still missed quite a few (including my mother and brother!). So, you have our apologies if you are not here!

Videos will come soon.

Loki (photo by Ashlyn):

Happy:

Cool:

Dandelions in the yard:

Getting in the car that Mom and Dad pushed:

On the car that he drove himself (with a single button):

In the yard with Mom:

Cousin Taylor:

Cousin Alexander:

Cousin Ashlyn:

Cuddles with cousin Ashlyn:

Walking with my brother's girlfriend, Alice:

Papaw Mark, my step-father:

Cousin Chloe:

Tubbing with cousin Chloe:

With great-great-aunt Linda:

Great-great-aunt Nancy:

Grandpa Ronnie, my father:

My step-mother has been fighting cancer for a few years and is now at home on hospice care. Grandma Lanette:

Hugging Grandma Lanette:

Lanette's daughter Leah really knew how to charm Loki:

By this time, Loki was too squirmy to sit on anyone's lap. But here is with his great-grandmother Helen:

Great-uncle Clay:

Great-aunt Rita:

This photo was captioned "Big Preemie & Little Preemie" by my friend Marcey. Her son Sam was born at 32 weeks, and weighed about 3 lbs 7 oz. He also had feeding difficulties for years, throwing up a lot. He also had a speech delay. Now he is 14 years old, just fine, and gives people like me much optimism.

Indiana

2010-04-29T19:09:00.000+02:00

Mom, Loki, and I just returned from a week in Indiana, where I was raised. It was great seeing my family. Mom hadn't visited in over two years, and I did so only briefly last fall while my grandmother was ill. It was particularly nice for Loki to meet so many relatives, around whom he seemed to be instinctually relaxed.

Of course, this was Loki's first flight. The traveling went better than expected. We even had an extra empty seat on the flight back. But our time there was surprisingly tiring, as Loki did not sleep well.

Unfortunately, the health of my step-mother, who has been fighting cancer for several years, took a turn for the worse. We visited her at home several times, and Loki's presence cheered her up.

Also, while we were there, Loki had his 1 + 1/2 year birthday.

In the department of small things making big differences: We must give Loki a shot of food or water about every 10 to 15 minutes from 7 AM to midnight. We often forget for a few extra minutes, which can quickly add up over the course of a day. I began to ask around for an automatic adjustable pocket timer: press a single button, and X minutes later, you are reminded. Sure enough, Marcey (my friend from way-back-when) gave us her GymBoss, which does exactly this. It has made a surprising difference. Thanks!

We will have a large photo and video album soon. But for now, look what my mother (a/k/a Nana) dug up. This is me around age 15 months. Does this look like anyone else?

I even had the curls:

March photos and video

2010-04-11T19:00:00.000+02:00

Trouble ahead:

Yes:

With friend and fellow former preemie Finn:

At home with Margaret:

Suspended:

Elevated:

Seated:

With friend and super case manager, Brooke:

Blondie:

In this video, Loki dances to the alphabet song. He knows when it is about to end, and then makes his cat sound. Dad plays with Loki. And then Loki plays in the bathtub.

Milestones and struggles

2010-04-10T08:53:00.000+02:00

This is a quote I ran into when I was looking for an old phone number for one of my friends whose daughter used to be my client. This child was born prematurely as well.

Can we emphasize more how she is losing skills that she had before? Like numbers, colors, shapes, songs. It seems she gets them in one session, and when I train with her every day, she 'knows' them, but if I stop doing that - like during vacation - she doesn't remember anything.

I mentioned in one of my previous posts that Loki "loses" skills often as rapidly as he masters them. This makes for a colorful pattern in development, not uncommon in preemies and often described as scattered skills. An example of what I mean: Loki's developmental age levels range from approximately 7 to 20+ months. He shows delays in gross motor (e.g. walking) and expressive language (e.g. talking) development, but is quite ahead in receptive language (e.g. listening) skills. Even his developmental pediatrician was very impressed with his understanding of both Dutch and English.

Being a parent of a preemie comes with many wonderful and challenging tasks. We are able to see the miracle of where Loki came from and where he is going. Our tiny 1 lbs 5 oz beautiful alien (and I mean this in the most positive sense) is now a handsome, chubby enthusiastic toddler. I very much appreciate it when people have faith that Loki will "be fine." I personally believe he will be much better than fine. Loki is a strong, determined and smart boy. And.... he was born at 24 weeks, has undergone a series of very traumatic events, and will need extra help developing to his full potential. Not only does he have to somehow "catch up" for the 4 months he was born early (I do not like the term catch up but this is what is used and for lack of better I will use it as well) , he has to process and somehow overcome all the scary and painful moments he already encountered in his life. It is not strange that this boy will show some odd and interesting developmental patterns. I have had plenty of conversations with parents of preemies about this specific matter. Seeing it unfold on a daily basis with my own child makes it even more interesting, but nevertheless also challenging.

I like to refer to this "sudden loss of skills" as the "fragility of preemie development." Most people are born full term without any major long lasting issues. Our nervous system is developed such that we learn quickly how to organize stimuli from both the outside as well as the internal world, assuming that parents provide compassionate guidance. For example, think about proprioceptive (body awareness in space), tactile (sense through touch), auditory (through listening/hearing), visual (through looking/seeing), vestibular (movement of our body), and olfactory (smelling) inputs. Most people are born with the ability to learn how to regulate these different stimuli and are able to do so with help from our parents/caretakers. They hold us to calm us down when upset or gently pet our booty (proprioceptive), they rock us (vestibular), sing or hush (auditory), and darken the room (visual) when we need to fall asleep. As we grow, we learn how to calm down our system and how to organize our senses, which also helps us organize the world around us. This is a fundamental aspect of our development, as an organized nervous system is needed to help us focus on mastering new milestones and learning new skills, day in day out.

I mean no disrespect towards children and adults with developmental challenges of a variety of diagnoses, but for obvious reasons I will focus primarily on the issues of regulation of the senses and developmental issues based in issues of prematurity and extensive hospital stay, and specifically how this relates to Loki's development.

When a baby is born prematurely, he is not ready to process the world. Among others, the nervous system is not ready for all the stimulation fired straight at it and in addition, some of the basic body functions are not yet ready for the outside world (e.g. eating). Add to that the fact that a (micro)preemie is not put on their parents' chest to feel, smell, and hear his familiar caretaker(s). This baby does not land into a warm place surrounded by family, where everybody tiptoes around and whispers (after the first hectic hours of being born, of course) to not wake up the baby.

On the contrary, a (micro)preemie is often born through c-section, rushed to a table surrounded by many people who are trying to keep this little person alive, with bright light, lots of noise, tubes being pushed into the lungs, needles stuck into the body, and lots of pain. This is just the beginning of a long, long road toward growing to be full term while almost constantly being hurt by needles, feeding tubes, and intubation. In addition, there is an overload of stimulation by sound, light, and touch for which his system is not yet ready. How does this child learn to regulate his senses? How does this child learn to process not only "normal" input such as voices, diaper changes, and light, but also regulate all this pain, shock, and fear?

I do believe that this is where wonderful nurses, doctors, and parents come in to play. When Loki was still at Alta Bates the nurses were generally very careful and gentle with him. Even when they had to put in another IV (sometimes this happened several times in one day), they prepared Loki by telling him what they were about to do. A blanket was kept over the incubator to keep it somewhat "dark." Despite ringing alarms, medical staff coming in and out and nurses and parents talking, effort was made to keep it relatively calm. I can attest to the fact that this is not the case in every NICU. I thoroughly believe that, thanks to the knowledge about compassionate care and child development within Alta Bates, Loki has an amazingly well developed regulatory system for such an early preemie. Of course, it helps that I am a stay-at-home mom and thus we are able to offer a consistent, calm, and predictable environment.

However--and this is what my rant is all about--it is impossible for a beginning like this, filled with illnesses, over-stimulation, uncountable medical procedures including six surgeries before the adjusted age of 12 months, to not have an impact on Loki's ability to learn and to retain information consistently. Add to this missed opportunities to play and learn due to frequent trips to and long hours of waiting in doctors' offices, as well as malnourishment due to severe reflux and frequent vomiting. Needless to say, Loki has a big task ahead in making up for missed time, "little" quirks in the nervous system, and the impact of several traumatic events. When anybody--but especially a young child--has to handle this many barriers, the acquisition of new skills and information retention can be a very challenging task.

A milestone as cutting a tooth, for example, is a big deal for a child, period; cutting a tooth for a preemie may impact the development even more. Not sleeping well can impact a child; not sleeping well for a preemie can impact the development even a bit more. Repetition of information to "program" and retain newly acquired skills is important for any child. (Think about wanting the same book over and over again) For a preemie? As you can imagine, this is even more so the case. A former preemie usually has to work extra hard in order to organize behavior and learning. Thus explaining some of the interesting, relatively large swings in skill acquirement.

When reading over the scientific literature, there is a lot being said about preemies' chances to survive and their prognoses. At 24 weeks, for example, viability rates range from 39%- 50%. This means there was almost an even chance Loki would not have left the NICU. A terrifying thought!

A common mistake is to think that preemies are just born a bit smaller, but once caught up in age and size they are just like any other child. Unfortunately this usually is not the case. There are a huge number of issues preemies are more likely to face throughout their lives than typical children. These days, researchers believe that, of all children born at 26 weeks or less, only 20% will have no long-term problems. This means there is an 80% chance Loki will have lasting developmental and/or behavioral challenges throughout life. Of this 80% with challenges, about 34% will have a mild disability, such as cognitive impairment or near-sightedness. Another 24% will have a moderate disability, such as visual/hearing impairment or Cerebral-palsy with the ability to walk. Finally, 22% will have a severe disability, such as cerebral palsy and no ability to walk, blindness or profound deafness. Add to this the increased likelihood of issues such as ADHD, ADD, behavioral problems, and depression during the teenage years. Just off of my head, I remember that approximately 70% of the preemies I worked with qualified for services in the school district or through insurance after the age of three. (This is an approximation, as I am simply trying to remember all the preemies I have worked with in the past 7 years.)

To give an example about long lasting effects, the girl I talked about earlier is 5 years old now. She is a beautiful, incredibly smart, and a very funny child. If you look at her, you wouldn't even think anything is different about her. Her mother is incredibly talented and dedicated to her development and overall well-being. She is going to kindergarten and the family had a very hard time finding the right place for her. The child is terrified of alarms, including school bells, and she panics when surrounded in a hallway by a group of peers. Specialists believe she may suffer from post traumatic stress disorder, a leftover from her preemie days as well as later hospitalizations. Without appropriate treatment she won't be able to function and gain skills and knowledge in an age-appropriate manner in a big classroom. A small classroom usually means private school, which is not possible for everyone due to financial means. Unfortunately, due to having heard too many alarms combined with the pain and trauma of endless medical procedures when her system was not ready to regulate the input, she now at the age of 5 faces challenges with school placement.

I know Loki will be "fine." Obviously, he has no major disabilities. Thank goodness for that. However, among former preemies, minor learning disabilities are often not identified and diagnosed until a child is actually enrolled in kindergarten or elementary school. So if people ask me, "How is Loki doing?" I think he is doing wonderfully well, I remember all too well where he came from. Concurrently, I am very aware of the fact that some of his seemingly minor symptoms can be indicators of difficulties later on. I believe it won't be anything we cannot overcome or address but I do think it is important to understand this when we are worried about his development. For some of you, these bumps may just look like normal developmental plateaus. Our worries are grounded in a reality we usually forget about because it makes no sense to dwell on it. Just for once, though, I want to share this information so people understand from where we are coming. Please understand why we are putting this extra bit of energy in encouraging Loki to communicate, even though we do understand what he means when he points and cries. The first three years of our lives our brain grows more rapidly than at any point after that.

A newborn's brain is about 25 percent of its approximate adult weight. But by age 3, it has grown dramatically by producing billions of cells and hundreds of trillions of connections, or synapses, between these cells. We also know there are many things parents and caregivers can do to help children get off to a good start and establish healthy patterns for life-long learning." (from Zero to Three web-site).

Early intervention services have shown to make a huge difference in outcome for children with struggles early on in live. I know all too well that the extra effort now can make a huge difference later on.

We want to keep it fun and relaxing for Loki, yet we also want him to grow to his full potential. Which parent would not want that for their child?

I could go on and on, much more I would like to share but I will save that for a later date. Thank you for reading.

Trip to coast near Monterey

2010-03-29T04:59:00.000+02:00

We went on a short trip to Pacific Grove near Monterey in California. It was a mixed bag of fun and exhaustion for Loki and me. For dad it was hard (net)working on his 4.5 day conference on geoengenering. He barely got to see the beautiful sand dunes, beaches and, of course, the famous aquarium in Monterey. Although Loki and I had fun, it was not all easy breezy. First, Loki is not cutting one but three teeth at once, and he developed a cold the evening we arrived at the conference grounds. He had horrible nights with very, very little sleep (I walked around with him approximately every hour for the first two nights) and the other nights were not much better. Because Dad was not feeling all too well either and was at sessions and often working as a rapporteur almost 13 hours a day (with tight meal breaks), we agreed he needed to sleep as much as possible, so I took over his night shift for a few nights. That combined with seeing each other only during breakfast, lunch, dinner made for an odd "vacation."

Regardless, Loki and I had fun. He was even charmed by the new pediatrician's office we visited in Monterey per advise of our own doctor's office (yes he had fluid behind his ears but "not yet" an ear infection). Loki liked the ocean, but not so much the feeling of sand on his toes. He loved the big fish in the aquarium, but not so much the ladies room (he starts crying every time we walk into a public restroom with more than one stall....). Loki loved watching all the people in the dining hall, but not so much seeing the flag pole without flags.

The food was amazing and it was great to get to meet some interesting people during our big group meals. One of my favorites? Paul Crutzen, Dutch Nobel prize winner and atmospheric chemist best known for his research on ozone depletion, and a researcher from South Africa, who was one of few who dared to join us at our table with baby!

Lunch with Dad:

One of many walks:

Playing on the blanket is fun:

Big blue eyes:

Dangerous tricks on the boardwalks:

First tooth

2010-03-11T23:51:00.000+01:00

Finally, finally, finally...... Loki's first tooth is cutting through as we speak. It was a long wait, considering that having teeth will help Loki significantly with the foods he likes, but make him gag because he can't chew them.

We were visiting friend Jeremy and his mama Lena. They generously shared some tasty cream cheese with Loki, which I fed him with a finger. While scraping the cheese off with his gum I kept feeling a sharpness that I had not felt before. Sure enough, Mr. Loki Sky has his upper right tooth sticking out just a tiny bit. It looks as if it's neighbor on the left may be on it's way as well. Would this perhaps explain a few days of grumpiness and fussy nights? I think it may.

Once again Loki decided to follow the not so common path. Not only does the average child cut their first tooth between 6-9 months, most children get their bottom teeth first. That's what I have been keeping my eye on. Needless to say, Loki likes to surprise us even with the small steps! I guess we asked for it when we called him Loki!

On "Sky"; Rebecca gone; doctors; development (video, photos)

2010-03-03T01:00:00.002+01:00

Early on we told of how we arrived at Loki's first name. But we never explained Sky. Mom and I are both into music, and among the music we like, nothing tops Phish. Many of you know first or second hand how experiential this is for us. Back when Mom was on bed rest, she was listening to her favorite Phish song, "The Divided Sky." It is a (mostly) instrumental, guitar driven, and soaring epic that is composed for the first eight minutes or so, and then opens up and builds from there. Here it is:

We had decided on the first name, but were stumped on the middle name. She shouts to me in the other room, "How about 'Sky'?" What I like about it is, like Magnolia, it is both a reference to music and nature without being excessive in either way.

Rebecca left a week ago Monday. We already miss her presence, company, and amazing assistance. She'll always have a special place in our household, and we look forward to seeing her again.

The swarm of doctors' visits continues. I joined Mom to take Loki to the urologist, Dr. Baskin, who did two of the three surgeries on Loki's kidney. After reviewing a kidney ultrasound, he said that it looked great. He agreed that we need to keep an eye on it, and that extra water is a good idea. But his attitude was more optimistic than that of Dr. Lo, although he also clearly stated that the Nephrologist is the Dr. to make any statements about the kidney.

Mom took Loki to the child development specialist. Dr. Daly, whom Mom knows through her many years in early intervention, was quite impressed with Loki. Here's Mom's report:

As we knew, Dr. Daly confirmed some minor delays in gross and fine motor development, in verbalizations (spoken words) as well as in adaptive skills (specifically eating). However, Loki's receptive language skills (understanding language), cognitive skills (thinking and problem solving) as well as expressive language through gestures (e.g. sign language) are coming along very well. She said "I do not think I have ever seen a baby his age, born this early, getting this far" into the test. Even since this visit two weeks ago, Loki has made some progress. When asked what the kitty says he answers "mauw" and his first word, in addition to "mama" (for both Daddy and Mama) is "baby" (he still needs some prompting). Loki has discovered walking behind his wagon and his "side to side" head motion has turned in to a meaningful shaking "no" when he does not want or like something. Finally, Loki has welcomed us to an early phase of the "the terrible twos." He throws little tantrums when he disagrees, throwing himself on the floor, making his body limb and screaming.

Although we are, of course, very proud and happy with how amazing our little guy is developing, it is not quite as natural of a process as with "typical" children. Loki needs active prompting and encouragement (almost) constantly in order to master new milestones. If we forget to reinforce and remind him of certain activities/words (e.g. who his birdie is) he quickly forgets. Typically children show plateaus in their development and have growth spurts. With Loki these plateaus are more intense and sometimes he shows significant regression to earlier stages (often, but not always, after a procedure). The encouragement and prompting are somewhat more "exaggerated" than one would expect with a "typically" developing child. This, in turn, is very typical for preemies in general, and micro-preemies in specific. The extra focus on developmental milestones is, as I've observed during many years of early intervention (and as demonstrated by research), what makes the difference in developmental outcome.

In other words, Loki is doing wonderfully well, yet his development does not unfold quite as natural from exploring the environment and observing life around him as in most children.

Other difficulties remain. Loki is generally less fussy overnight than before, but the rough nights still happen. He throws up at least once (often more) daily, but we are learning how to pace his food and water. Being in the car is now a strong trigger; it may be time to move to a forward-facing car seat. And his skin around his feeding button is often in bad condition. We must apply various cremes to it a few times per day.

Loki is now sleeping in the second bedroom. For now, Mom is sleeping overnight on the floor next to him in order to reassure him when he wakes. So far, so good.

Best of all, we took Loki on his first bike ride. We went on the bike road along the East Bay shore, from Emeryville up to the market at the Berkeley Marina, with views of the Golden Gate Bridge all along.

This video has a few clips:

He shows his action-on-command, "side to side" which has also turned in to a meaningful "no." He looks for his new baby, and sort of says the word (in the last few day his "baby" has gotten more clear and is being used at more appropriate moments). He then shows his symbol for eating (smacking lips).
He shares his cat's "mauw."
Walking with the wagon.
Loki often makes sweet moans as he falls asleep.
Some of the "bad" moans Loki makes, even while he is asleep.

Bathtub Loki:

Almost in the nose:

Fluff Head:

Mmmm, paint:

Weee:

Eating with Mom at the Seabreeze Cafe at the Berkeley Marina. They have the same nose:

Gonna take my bike out. We have the same expression:

The Good and the Ugly (video and photos)

2010-02-14T21:29:00.000+01:00

February is "national check-up month" for Loki. Just to give you an idea: he goes to feeding clinic twice, has occupational therapy at home once and a Synagis shot once. He was seen by his nephrologist Dr. Lo and ophtamologist Dr. Good. He will see Dr. Tsai at the gastroenterology clinic at UC San Francisco as well as Dr. Baskin his urologist at UCSF. The urology appointment will be preceded by the beloved kidney ultrasound. Lastly, he has a date with Dr. Daly at the infant follow-up clinic at Alta Bates in Berkeley. (This means the second round of the Baley Scale of Infant Development).

First, the best news is that Loki is rapidly gaining weight. He is up to 20 lbs and 14 oz (9.48 kg). According this growth chart [PDF] of very low birth weight premature boys, this puts him at the 75th percentile! What's more, this group includes babies born as large as 1500 g (Loki was 610 g) and 37 weeks gestation (Loki was 24 weeks). So for a 24 weeker, Loki should be even higher than the 75th percentile.

Thus far, we have mostly good news from Dr. Good and a mixed bag at Dr. Lo's office. Dr. Good witnessed Loki's lazy eye, but is not convinced something needs to happen immediately. Apparently, unlike most situations, in case of strabismus, preemies are at an advantage. Former preemies are more likely to overcome a lazy eye without an eye patch or glasses. For now, we'll just see Dr. Good in three months.

The good news from Dr. Lo is that the protein level in Loki's kidney has gone down again, from 0.8 to 0.21. (We are not sure of the untis; perhaps mg/dl?) Any protein leakage from the kidney indicates some sort of inflammation. In Loki's case, the cause of the inflammation stems from the trauma his kidney endured during its failure in January 2009, the three surgeries, and the dehydration over summer. Thus, his kidney is still recovering, which is great to know. Any leakage above 0.2 for adults and 0.5 for children is treated with medicine. However, treatment is usually not started until children turn 12 months because of its impact on kidney growth. Fortunately, Loki has steered away from another medicine in his diet, at least for now.

Less good news is that Loki's kidney will always be at risk. For whatever reason, I had hoped to hear one day that Loki's kidney is functioning normally and the many jars of antibacterial gel could be thrown overboard or at least could be cut in half. This is not and, unfortunately, will never be the case. Dad had always understood this, but somehow I had thought that maybe, perhaps... who knows?.. he would grow out of this. Dr. Lo emphasized the need for Loki to be tested for kidney functioning the rest of his his life, even if all tests come back within normal for 5, 10, 20 years. As she described it, "a kidney like his, having endured this much trauma, will always have less reserve and never be completely free of risk. Most likely, he will have issues with his kidney at some point in time." Goodbye bubble... hello anxiety.

A single, imperfectly functioning kidney works overtime and tends to shed more fluids than a healthy kidney. This increases the risk of dehydration. Loki's urine was too concentrated. Dr. Lo unfortunately had not informed us earlier that Loki needs to take in approximately 25% more fluids per day than a typical child, at least for now. This seems easy. It is a very tricky balance, though, between keeping him hydrated by "pumping him up" within the three hours that a typical feeding cycle takes, and at the same time preventing him from throwing up because we go to fast. We have recently been quite successful. Until he is toilet trained, we just have to write down the number of wet diapers. Once the boy uses an actual toilet or potty, she mentioned we may need to measure Loki's urine output. This will provide us with a more exact idea on how much extra his kidney needs in order to function properly.

The long term implications is what upsets me most. The anxious mind that rules my life now and then immediately took me to some horrifying places. Can you see an ever more independent Loki thrilled by the power of manipulation and resistance? "I am not thirsty! I am not going to drink!" His scared mama looking at him with teary eyes begging him to please, please, please take a sip! It's also disturbing to think about school or daycare settings where a substitute forbids him from drinking during class because "nobody is allowed to drink." I have had many imaginary conversations with these subs already during late night hours, and oh my, they had better watch out. Dr. Lo agreed that it can be very challenging to get enough fluids into a child. I am afraid that we have many more emergency room visits due to dehydration ahead of us. Every time Loki gets dehydrated--and we have seen how easily this happens--there is more damage to the kidney.

Finally, I am worried about what this means about building up Loki's immune system. Dr. Lo explained that Loki will need flu shots the rest of his life, as a true flu really strains the kidney. However, flu shots are not a guarantee he won't ever catch the bug. Although he needs to get common colds in order to become resistant to viruses out there, a regular cold often comes with a cough. A cough increases symptoms of GERD (more reflux), and more reflux means higher risk for dehydration. You can see my head spin in circles, I assume?

The simple reality is that Loki will go to school and catch colds and even flues. He ain't no Bubble Boy. On the other hand you will hear "please use the hand sanitizer, wash hands upon entering, and please don't visit when you have a cold or flu" many, many more times. Yes ,we are slowly entering into a space where Loki visits friends and mouths their toys. We have outings to public spaces where Loki is exposed to public germs. Unfortunately we are going to be a bit more cautious than a typical family. And honestly, I think that bites!

To close this post on a more positive note, Loki's development is incredibly fun to watch right now. After the last procedure he regressed quite a bit, which was scary to watch. Recently, it's all starting to look much brighter and Loki is especially working hard on his receptive and expressive language. His vocalizations are somewhat behind his adjusted age of 12 months, but he is starting to get the hang of language signs. Although not always accurate or quite consistent he uses more (=I want), eat, all done (=I really don't like that), dog (=all mamals), fly (=everything that moves), jump (=frog or stuff falling down) on/off (=lamps), open and shut. In addition Loki has renewed is love for sticking out his tongue; he points at his feet, hands, hair, and nose; and he "puts" cream on his tummy. He points at most objects and people he sees frequently and he feeds his doll Ole with a spoon. Loki's gross motor skills are a little bit delayed, although he is very skilled at crawling and cruising around furniture. He does not show any interest in walking when his hands are being held. The little guy pulls in his legs and starts screaming when we try to encourage him to take a few steps. I wonder sometimes whether he is a little intimidated by his new, impressive weight.

Lots more to say but the post is long enough as it is!

Thanks to those who were able to hang in there for the whole ride.

The three clips in this video requires some explanation, as most dialogue is in Dutch. (If you get this by email, you can watch the video at the blog.)

Talking with Mom, Loki knows to shake his formula. She asks, Is it food? He puts it in his mouth. She says that it goes in his tummy, and he puts it there. When she asks, Where is your hair?, he crawls off and (eventually) gets his comb. He then correctly gives the locations of his feet and hands. But when asked about his nose, he goes for the ear. Finally, when Mom says the Button Buddy is for his tummy, he puts it there.
Loki shows off his ability to make a "raspberry" sound. After Mom points out that is what his farts sound like, he signs for washing his hands, which may be because he pointed to some antibacterial gel. Please note that this is not my real laugh; I am intentionally being goofy here.
Loki "eats." This part is somewhat long and boring, but we want to show the limits of his eating. He is so much better than a couple months ago: He happily puts food in his mouth and chews. But notice that, over the three or four minutes, he actually swallows very little.

Rebecca, Margaret, and Loki on top of San Francisco's Twin Peaks, looking toward Oakland:

Rebecca and the big boy

Playing with the twins:

Hug from a twin:

With Mom on the Berkeley pier

Hanging back from the Ergo carrier:

Swinging!

Off to the beach with Mom:

Strolling:

Picnic on the university campus:

Holiday Gift Drive for the Alta Bates Summit Medical Center NICU 2010

2010-02-13T23:44:00.000+01:00

In 2008, we spent the holidays at the Alta Bates NICU with our beautiful boy Loki Sky. We were surrounded by the love of our family, friends and wonderful primary nurses. Regardless, those days were beyond challenging.

In 2009, we were able to handout 56 gift bags, approximately $1200 in gift cards for those in economically difficult circumstances, and 5 massage certificates at the Alta Bates NICU. We were only able to this with an incredible number of very generous donations from many people. We celebrated the Holidays as we had never done before.

We are still inspired!! In 2010 we want to do it again. Our goal is to collect enough money to buy a gift for each baby at the Alta Bates NICU. We still have time, but one can never start too early. We need your help!

If you wish to support a family in the NICU during the holidays in 2010, you can donate via Paypal. Note that you do not need a Paypal account, only a credit card:

Or, please send a check to K. Sprenger, 405 Eastview Dr., Bedford, IN 47421. In the memo please write Loki Sky Holiday Gift Drive and Fund.

We honor and thank everyone who contributes. Please let us if you do not wish to be publicly acknowledged.

One year, in another way

2010-02-04T08:34:00.000+01:00

Tomorrow (Thursday the 4th) is one year after Loki's due date. In other words, his adjusted age is one year. The good news includes that, due to our new feeding system, his weight has shot up to 20 pounds (9 kg)! That is the tenth percentile at one year for normal, full term babies; he is surely at a higher percentile when compared to other micropremies. This is quite the accomplishment, given the circumstances!

Our new feeding regime continues. It is a lot of work: from 7 AM until midnight, we feed him over an hour, wait 30 minutes, give him water over an hour or an hour and a half, wait 15-30 minutes, and start the next feeding again. Thus we are almost always doing something. If it goes right, we do little overnight. But two things typically go wrong. First, he still throws up quite a bit, generally a big one once per day. It is very sad to see Loki go through the discomfort. And given how much we work getting the food and water into him, this feels like a kick to our gut; it is very frustrating. When this happens, we compensate with more food and water overnight. Second, he is often extremely fussy at night, screaming and flailing his arms while asleep. We know nothing is physically wrong, because if we fully wake him he is fine.

However, overall, both of these negative aspects are very gradually lessening, and the general trend is in the right direction.

The new Mic-Key button is an improvement. The tube doesn't slip out of the button accidentally, and it comes out easily when you want. However, the button itself can pop out of Loki's tummy. This already happened, and Mom was quickly able to put it back in. Also, the button sticks out a bit "tall" from his tummy, and thus can irritate his skin as he rolls around at night, pushing it against his body at an angle. Fluid can even leak around the button (eeeewww...). We are working on a system of gauze and girdles for now. We ordered some Button Buddies and Mic-Key-master Cheryl recommended Lyofoam, which we will look into getting.

We have only been using the pump to give him water when he's asleep. But lately, this seems to really bother him. I can't explain why a slow, steady stream of water would be more irritating than a series of bursts delivered by syringe, but this seems to be the case.

Loki has recently taken a big step backwards in language and cognitive development. He seems to have lost many of his signs, and his ability to respond to quite some requests. Mom is now working extra hard on these developmental milestones. The developmental psychologist at the feeding clinic said that there is anecdotal, but not quantitative, evidence that this can result from anesthesia. Loki's loss of abilities did approximately coincide with his last surgery.

Given this feeding system, and the difficulty while doing it out, we go out a bit less. Recently, though, Loki, Rebecca, Mom, and Nurse Margaret went to the California Academy of Sciences, a science museum, in San Francisco. And Loki, Rebecca, Mom, and I went to the petting farm in Tilden Park in Berkeley. Photos below.

I forgot to mention in my previous post that Loki did not need to be intubated during his last surgery, and he did not need supplemental oxygen after it, as his blood oxygen saturation level was high. These are signs that Loki's lungs have strengthened.

Loki shows Margaret that the fish wants a bite of his pacifier:

Baby, Mom, Gorilla:

With Dad among the goats and eucalyptus:

With Dad again:

Not so sure:

About this, he is sure:

Chillin':

Loki likes lights. The first one that he can turn on and off himself is, unfortunately, inside the refrigerator:

Scattered updates (photo, video)

2010-01-24T01:05:00.000+01:00

I survived taking care of Loki by myself for 2.5 days while Mom, Rebecca, and Kyra went to Disneyland. (Nurse Margaret also went, as did Emma and Finn). It was tiring and a lot of work, but I learned a few things and gained quite a bit of confidence.

Our new system of feeding Loki continues to go generally well. He gets more calories and water, vomits less, has less reflux, and doesn't require overnight feeding. That last point is important for three reasons: overnight feeds can interfere with his brain "learning" how to eat properly; we must wake to start and stop them; and they cause him to be fussy.

The overnight fussiness hasn't stopped, however. Since Mom returned, Loki has had some extremely fussy periods at night. We think he is having difficult dreams, as stops once woken. He is likely processing her absence and the day in the hospital. (The former may have been worse as Mom both left and returned while Loki was asleep.)

Loki continues to develop in other ways. He is clapping and beginning to make a few signs, such as "more," "food," "all done," and "turn that lamp on and off, please."

After an eating session with Dad. Have you seen my straw?

Sleepy with Dad:

With Mom after a bath:

With Kyra:

With Rebecca:

Nurse Margaret and Mom at Disney:

The old button, with gunk and red skin from all the taping:

With Dr. Rhee at UCSF:

New Mic-key button and tube. The tube slides easily in (and out) when the short lines on each are aligned. The tube is then rotated 3/4 of a turn to keep it in. The side "BAL" valve is where water is put in (or out) to inflate or deflate the little balloon on the inside that keeps the button fixed in Loki's belly.

A gift from the UCSF Children's Hospital:

In this short video, Loki shows his new dancing style of swaying side-to-side.

New Mic-Key button today!

2010-01-22T19:09:00.000+01:00

Today, Loki is undergoing minor surgery in order to swap out his old button for a Mic-Key. The advantage of the new type is that the type can lock in. We look forward to not dealing with it popping off, and/or needing to use tape to keep it in. He will have to go under general anesthesia to get the old one out via his esophagus, but no cutting will be necessary. He should come home this evening.

Mom is taking care of this on her own, and may be joined by Kyra in the recovery room. I need to work today.

Update (6:44 PM PST): Mom, Loki, and Kyra are on their way home. They had to wait four hours before the surgery even began! But other than that, all is well, as far as I know. Recovery was "super speedy."