Calvin's braces

Gosia's been working with Calvin on his braces, to help his feet a little, a little each day and at physical therapy in the hospital. He does the walking motions, but his center of gravity is still off.

We're getting him back on the Incline Floor now after at least three weeks off to his illness and he's doing great.

It only takes his 20 - 30 seconds to get down it now, where it used to take at least a minute or two.

he's vomiting much less, but he's still teething. Gosia's started feeding him solid foods again, which he takes a lot better than the liquid diet.

to tide you over

Well, things are holding together with towels and duct tape over here... Calvin's still throwing up, but not as dramatically as before.

He's got an appointment with Doctor Lin, a gastrointestinal specialist, tomorrow. We'll see what that yields...

I'm not going to write too much today, but I have had a little more time the past few days, so I plan to get back to posting regularly again. We just haven't had the time...

Eli and Rhiannon are doing OK.

Like I said, I'll get back on soon.

Calvin & the kitty

Here are a few pictures of Calvin and one of the kittens. He was hanging out on the floor and one of them wandered over to him. He grabbed her and tried to eat her the first time, so then the kitten kept it's distance.

Below is a movie of Calvin... He's gotten some of his energy back! This is his normal happy-flailing...

Calvin is doing better now. He is drinking about 600ml of Pediasure daily now. For his weight, he needs 700ml. Over the weekend, Gosia is going to try and feed him some very, very soft food. He threw up once today, but the vomit lately seems to be from cotton mouth or teething...

Friday, November 23rd

Calvin's been eating better, much less vomiting...

new pictures soon of his hospital therapy, etc...

Life goes forward...

Not much new to tell anybody... Things are still pretty much the same.

Some vomit, seizures, he's lost weight... he was 7.3 kilos, he's down to 6.9 last Sunday (they weighed him in the hospital when Gosia took him in for mild dehydration) and we think he's lost more since then.

Not unexpected, but dramatic...

He's drinking out of a bottle again, so there's that. But no solids.

Anyway, we recently came into a dog and three cats. We saved them from the needle. The funny thing is, they're all pure breed animals. We're more of a mutt family, but an animal is an animal. It's not their fault they were born that way...

So, the puppy sleeps with Eli at night and whatever Rhiannon can catch sleeps with her. She's taken to sleeping up on the top bunk so they can't escape...





























The cats are eating Eli's eggs here...

The puppy's name is Kim Chee, our family's favorite spicy food... The kitten's names are Scrap and Spring, the the elder cat I've taken to calling Ethel Merman...

Sunday evening, 18th of November

Calvin was in the hospital yesterday for minor dehydration due to the vomiting. He was treated with an IV of fluids... nothing too dramatic, just exhausting.

It's been two weeks since this round of troubles has begun, and we're just beginning to see some change.

He got a full blood/stool workup done at the hospital, and there's nothing "wrong" with him. He may have had a gastrointestinal something-or-other, but it's gone now. So, was it the seizures or a stomach virus? We don't know... We're going to see how he responds to the Pheno' for a week or so... he's not going to be getting the HBOT for a while, since it can have the side effect of increasing seizures.

But he seems more out of it during the day, now. Maybe it's the teething, maybe it's the dope, maybe it's recovery, well have to wait and observe that...

More soon, hopefully tomorrow.
I never have time to do anything over the weekends! Ah, the irony!

Wednesday, November 14th

Well, Gosia went to the hospital with Calvin for a visit with the Physical Rehabilitation doctor, Doctor Chow. Calvin's still vomiting, but it's probably due to the seizures, which, like I wrote, come all the time now. We hope that some Speech therapy will help Calvin get used to the sensation of things being in his mouth.

Plus, his wife, the hospital's pediatric neurologist (who came down to see Gosia during the visit!) suggested we give him a low dose of anticonvulsants at night (link to wikipedia)... Calvin got half the dose , but tonight we must try the whole pill of Phenobarbital (link to wikipedia). He's a little out of it today, but hopefully most of the side effects will happen at night and he'll just sleep a little sounder.

His liquid diet consists of Pediasure complete, by the way. For his age, he should have 1000ml a day of the stuff and he can live off it.

For his body weight, 7.2 kgs., he should be intaking 700ml, and his stomach can currently handle about 400-500ml. So, we'll be very slowly trying to grow his stomach so he can get more in.

We talk to Calvin's doctor, Doctor Richard, who cared for him all the while he was in the ICU, regularly-- he gives us a lot of help and support so we can feel less alone in all this. The doctors and nurses have been very supportive to Calvin and us.

Here are a few pictures I got of him today, playing with his Eli-made rattle.

More soon...

Days of vomit and seizure

No real improvement. We're trying a liquid diet administered with a dropper. Hopefully it'll ease the gagging reflex he's developed. But the seizures are everywhere... We've stopped HBOT for the week. The extra oxygen can give him more seizures, so maybe that'll take some pressure off his brain.

We have the option of hospitalization/food tube, but we don't want to go down that route unless it's totally necessary.

The risk that he could pick something up there is too great. His kidneys are doing better, though. We just got the tests back. His creatinine level went down another point.

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Well, it's evening now. Gosia got some food into Calvin while I was at work using the "dropper method". His stomach's just so small... if he has too much in it, he burps up what won't fit. We're going to try and grow his stomach. Little by little. He can fit in about 50% of what he "should be" eating.

Saturday, November 10th

Today was a bad day for Calvin. He's been gagging during meals quite frequently the past week, bringing up everything un-digested in his stomach each time.

We're sure it's related to his seizures, which take him someplace else when they come, and when he comes back he's often startled and disoriented. If it happens when there's some food in his mouth, he'll gag and empty his stomach.

So, we're trying to figure out the root cause and the solution... He's teething, so there's that. The last time he was teething bad back in NYC, we had to start over from scratch with feeding.

Back to formula and rice cereal...


Still, his energy remains high...


here's a few pictures I got today...

...plus Rhiannon with a fern...

Calvin likes to read....

A couple days ago Calvin was rolling around and found one of his favorite books, a board book of animals. He loves it because Gosia makes all the animal noises as she reads it too him. So Calvin had the book and started yelling Mama.

He's become very good at tactile object recognition. In the middle of the night, half asleep, he can search around with his hands for his pacifier, pick it up if he finds it, and pop it right into his mouth.

Anyway, Gosia came over and read him the book, and he had a great time! I got a couple pictures...

We've decided that we're going to be using blurry pictures here on the blog. Firstly because the blog is about our life and life is blurry, rarely still, and hardly photo friendly. Secondly, Calvin is rarely still enough to get a non-blurred picture! I suppose the same can be said of any kid... but at least with Eli and Rhiannon I can catch them in a rare moment of stillness-- with Calvin it's just a lot harder.

Calvin's daily journeys...

Here's more of Calvin in his spider-suit.

He loves playing the Wah wah game... When you pat his mouth he'll make the noise so it goes wah wah wah... it's the simple things in life! But he's more and more interactive.

Gosia plays a "find the light" game with him -- at night in a darkened room, you just use a penlight and have him find the dot of light. He's been getting better at that, too.

And he now says Mama constantly! He had been doing that and stopped, so it's a big deal around here.

But he's been teething, so that knocks everything back. He's going down the floor regularly, now, but he's more tired than usual and frustrates more easily. Plus, the seizures... they come and go. Sometimes they'll even get him excited, but more often than not they'll just freak him out. He's also much more prone to throwing up when he's teething or sick or seizurey.

He was, of course, diagnosed with Epilepsy a month or so ago, even though he's been having seizures all along. We called them loopy turns, but they were seizures.

The neurologist we were going to in NYC told us that they were "something else," but when we got back to Taiwan, we were looking around on YouTube and found some videos parents of brain injured children had made. It showed what a seizure looked like, so Gosia went to Calvin's neurologist here, told him what we thought, and he said, Of course they're seizures!

They're not too strong, so we're keeping him away from the horse tranquilizers (anti-seizure meds) as long as we possibly can. Hopefully forever...

On another note, Monday after the Hyperbaric Oxygen Therapy (HBOT) Gosia took Calvin for blood work -- it's been a month so we'll soon see how his kidneys are doing.

This is where the praying comes in!! I know Calvin has a lot of prayer support out there, and it means so much to us and Calvin.

I've been asking Saint Zeno to help Calvin since I found him in my Lives of the Saints. he's the patron saint of children learning to speak and walk, so I think Calvin falls under his jurisdiction. And I just found Saint Herman who himself had Cerebral Palsy and was brilliant.

Saint Herman the Cripple
Saint Zeno of Verona

That's one of the great misconceptions, we've seen and learned, about brain injured people. Brilliance is hard to measure with a brain injured person. You can't gauge actual intelligence on exhibited intelligence. We know Calvin is brilliant, it's our job to help him break the walls and express that brilliance.

So, please do pray for Calvin. Most of you know that we don't think Calvin would even be here without prayer, and he still needs that fuel. Every day is a fight for this kid and he really is amazing at what he does....

Eli's morning

Well, here's Eli in the morning getting ready to head off to school. He's in the local Chinese public school, two minutes away from our house.

He should be in 2nd grade, but he's in 1st so that he won't feel left behind in Chinese.

Really, he's there for the Chinese. His math is at a 3rd grade level and he's taken off with reading. He's started writing for fun on his drawings, too...

...soon, I'll pull him out of school, so he can herd the goats...

We're big supporters of the backyard classroom-- last month he discovered some organisms that had grown in some stagnant water and studied & observed them for a few weeks. And with Calvin around, he has a college level understanding of brain development! It's a well rounded education...

Here he is outside his school with his Hi Mien Bao Bao schoolbag... Hi Mien bao Bao is Chinese for Spongebob Squarepants. It translates roughly as "sponge baby that does silly things"...

Here's the inside of his school. Schools here are built in a sort of courtyard style--

--the classrooms are centered around outside hallways that have trees and gardens. If you're going to be bombarded with endless pointless standardized tests, it's a nice environment to have it happen in!

And here's Eli's classroom.

a November trip to the beach

So, today after Church we headed out to the beach. Through the city, out into the undeveloped areas.

Tainan is expanding rapidly, and there are huge building projects going up around the outskirts of the city in the fishing town of AnPing. So, you'll have these groups of beautiful villa townhouse in the middle of a field of wild grass.

The town laid down wide roads a while ago in anticipation of a building boom, and it's slowly happening.

But for now, there are these six lane boulevards leading out to nowhere but fish hatcheries and traditional villages.

Through those hatcheries, down a sand road raved with oyster shells, you hit the beach.

It's usually covered in driftwood and whatever washes ashore in the typhoons, great for scavenging. It's a bit remote, but there are usually traditional fishermen around so it's not too desolate.

It's November, but it's like late Spring.... It gets cool at night, but in the day it's perfect beach weather. We hang out on beach shelters that are built from washed up bamboo. Built and re-built and re-built after being washed away in typhoons.

This is a series of photos showing Calvin's
progress down his Incline Floor. He'll go down it in a minute or two now. It's at a height that makes it easy to go down but without him sliding down.

It gives him exercise, but the main purpose is to teach his brain that his arms are there and they can be used to propel him. It should hopefully also help his vision converge. Slowly by slowly we'll be lowering it as his ability hopefully increases. He's going down better and better, day by day. He's wearing his anti-roll device. He wears that to dissuade him from using rolling as a means of mobility.

We built the floor a couple weeks ago. We'd been trying to find somewhere to build it for us for a month, and we finally decided to just figure out the dimensions, get the wood cut, and do it ourselves. We cut apart a couple old wooden beds we had in the basement for the floor's finished surface.

Anyway, here are the pictures, plus a movie at the end! Just scroll down to see: