University Research Hospital 2

We did our second trip to URH today, again joined by one of the other teachers. It was a good visit. They took blood, but we won't get results until tomorrow or the next day. They did urine also, so we are hoping to learn more from that. It was mostly an uneventful trip.

Emily and I really enjoyed the day out with just Eva. We went to the national church office and enjoyed talking to people there. It's nice when someone else holds the baby, and sings, laughs, and plays with her. Eva loved the attention. At the metro, Emily and I parted ways--she went home to feed Eli and I went to get Sam.

This was Sam's first day of the strawberry class at school. It doesn't mean a big change, but some small ones (new classroom, shoes and bag go in another place). He seemed very happy coming home. He loves to point out trucks. When we got back home, another teacher was already there and we were soon joined by another coworker (Sam was very happy to see her). It's hard to make sure everyone gets the attention they need, but they all seem to be doing okay.

I'll update in the comments when we get results back. Sorry there haven't been any pictures lately.

2/5

We're at 60% power here, as Eli's developed a fever and Emily threw up after class today. Anyway, it was an exciting day. Eli spiked a fever in the morning, up to around 102.5. After lunch I took him to the local hospital. They listened to his lungs and x-rayed him. It was hard to get a clear picture, but they think he has bronchitis or a very mild pneumonia. In the meantime, Emily threw up, so I picked up her and Sam on the way home.

Our internet at home is down. Our phone wasn't working, then they fixed that but messed up the internet. I've actually tried to get rid of the phone line before, because it seems to cause more trouble than it is worth. Somehow our wiring is mixed with the neighbors. They previously ran a wire through our windowpane (!) to disentagle our phone from the neighbors', but we're now clearly re-entagled. Originally they were going to wait until Monday to come back, but I talked them into tomorrow ("badgered" is closer to the truth, but since we've been through this twice before, I thought it was worth it). Not the world's biggest problem, but frustrating sincde the weekend is often when we have time to talk to family.

The weekend is looking a little less clear now. Originally we were to go swimming with the family of the two girls I mentioned. Sunday is the baptism. If Eli and Emily perk up, we'll probably be okay. I may go swimming with Sam and leave Emily home with the babies. We'll see.

I also found some second hand movies, so Sam is watching a Disney movie about dog astronauts (!!??). Another teacher stopped over tonight, which made the evening hours nicer. Chiungling made some awesome pumpkin/rice based baby food. People here don't really used canned baby food, so the babies get pretty much all home-made food.

Oh, and a typhoon may be coming through tomorrow or the next day. We're hoping it's mild.

End of the Summer

Our summer is wrapping up here. It's hard to believe that it's coming to a close. Eva's still in the 7.5/7.6 range, which shows great improvement. She is a pretty happy baby. She and Sam seem to have a special bond and she lights up when she seems him.

Sam is a very funny toddler. Last night two girls on campus (ages 5 and 7) came over, and he had a great time playing with them. Sam has now inherited a large horde of toys. It began with an old friend, who passed on many blocks and toys from his son, then the neighbors who added various vehicles and trains and whatnot, and then Sam gets little gifts from time to time and his mom is a sucker for a puzzle, book, or motorcycle. Now Sam is a one-man entertainment enterprise. I think we're resigned to the fact that our living room probably will be a baby-feeding/toddler-playing room for another couple of years.

A few nights ago we started explaining the baptism to Sam. I'm a little nervous because the sanctuary seats probably four or five hundred people and I don't know what he'll make of so many people. Last week we went up and peeked in. We've been trying to explain what will happen. We started showing him pictures from the blog of him as a baby, and at first he insisted that they were Eli. However, as the baby added hair, walked, and looked more like Sam he accepted that it was him as a baby. We explained that he is already baptized but that it will be fun for the whole family. We'll check back in to see what he makes of it. We try to talk to him a lot and he loves to talk to people. He is getting a better vocabularly, although he still sounds like a toddler.

To lure him out to the car in the morning the last few days, I've been promising him that we'd look at bugs. Today we saw two spiders, one of the very large "golden orb" spiders that (counting legs) is probably six or seven inches in length, as well as a hunter spider, some millipedes, and blue-tailed lizards. It made him very happy and it gives him a conversation piece when he gets to school. Next week he officially moves up to the "strawberry" class. We always feel a little guilty about having him in nursery school, but he likes it a lot and it's let him really be a part of things here. We want him to feel at home in both cultures for as long as we can (I know eventually we may move home or to the American school). The timing is working out well, since 2-5 seems to give a good basis.

Eli is coming along also. It was funny to look at the old blog posts because Sam was a better cruiser and took steps earlier, but I don't think he was such a strong crawler or quite so fast going from his knees to his feet. Eli has the balance and power to stand up directly now, without holding anything. He is also very smiley, with his six teeth. He's still a little harder to get to bed, and more resistant on giving up nursing. Oh well. They both like looking at books, and they both enjoy watching Sam play. They enjoy each other also.

Otherwise things are okay. I'm starting three weeks off from language. A week needs to go to class prep and probably two weeks need to go to finishing up various projects.

And just regular life takes time also. We need to get the car inspected, do dental check-ups, should probably do physicals, etc., etc. Emily's working on a paper submission and dissertation. She paid tuition on-line yesterday. Today's her last day of class. I'm trying to decide a little bit what to do on language. I may try to get an on-campus tutor if our langauge won't give us its discounted rate (since we're taking fewer hours). This might actuallyl be better, because it would give me more church-y vocab.

This semester I'm teaching three classes. I'm trying to figure out how to set them up well. Our campus doesn't have course software, so I may use one of the google programs. I want to do something where I can ask a question and have students post answers to an online course discussion group. I also want to invite some other teachers to talk about topics of interest. I'm still working on courses, but they seem to be coming along slowly.

That's the news from here. I'm writing this having dropped Sam off, and am now getting coffee. Part of the reason I started this blog is that my memory has never been great. I lose names and details fairly easily, so it's nice to have something like this to jog my memory or remind me of how a time felt. I find I've already forgotten a lot of the specifics on baby Sam--his teething, how the transition to walking went, etc. So it's nice to have this place to look back and see how things were. I'll try to post pictures of the baptism soon (I think there may even be video). More to follow....

Another good blood test

I went to Local Hospital tonight. This is one of the three places we've gone to for help and it has the doctor who initially checked Eva's blood and admitted her for re-hydration.

He took blood tonight. He kept insisting that he didn't think we should take blood too much, and I tried to remind him we'd only taken it once in the last five weeks. She's been off the medicine she was given, which is great for B's but can mess with the stomach. Her numbers were all in the normal range, which is a good sign. I think this tilts it towards not B's, but I suppose it's possible she has a mild case. Either way, it means it's unlikely this will be a major challenge we're facing.

We have another appointment a week from tomorrow at University Hospital. We'll probably do blood and urine there one more time to make sure she's doing fine without medicine.

This has been a very strange episode. One of the things I did a few weeks ago was to join the sole internet group for patients with B's. It's really a hard disease, so I am having a little bit of survivor's guilt. A new member described how their son can't handle the main medicine used to treat it and is in the NICU on continuous IV's. It's made me a lot more aware of the burden of parenting and of the struggles people live with.

Not much new...

We're heading into the last weeks of August! We're pretty excited about this. I think I'm going to stop language for a few weeks as I prep for the new semester. Emily and I probably need a day trip sometime also. The start of the semester is always a little rough. There are a couple of overnight retreats (faculty, student) followed by various chapel services, informational meetings, etc., and then the kick off of classes. This year I'm supposed to be close to full time, so I'll be doing more preaching, advising, tutorials, and the like. I think it will be okay. In some ways it's been hard to be only one foot into the commmunity. This year I'm going to really put my time into campus life.

I'm also a bit behind now on projects that were supposed to be finished. I think a lot of this is parenthood. I was telling a student I know that it used to be I could get a lot of work done between 9-2 at night, and now anything after five just doesn't go.

Eva is at a record setting (for her) 7.45 kg. I haven't checked out the weight charts, but it should take her out of the 1-5% category where she's been. We're hopeful about it, at least. It means that stopping the medicine hasn't led to a sudden drop in appetite or weight. Our next doctor visits are the coming Monday or Tuesday (forget which) and then a week later. The first is the local hospital and the second is the university research hospital.

I wish I had more to share, but that's it! The picture is one I took a few weeks ago.

University Research Hospital

I just took the file from Local Hospital and Local Research Hospital to University Research Hospital and met with a pediatrician/nephrologist. He said that it's strange that her electrolytes have bounced back quickly. He said the hypokalemia suggested B's, but the quick bounce back is an indicator against it. We're going to cut her medicine for two weeks and see how she does.

I think it may have been a combination of moving to hard food, bad teething, and sharing with her brother. I still can't figure this one out, but the doctor today said that her early growth was very normal and her bounce back in the last month has been very healthy. Anyway, some good news here. Barb may be right that it was eating related. We were tricked a little because she never really stopped eating, she just ate less and without much energy. If she's back to normal, I think we'll be okay with not knowing what it came from.

Saturday, O Saturday

We aren't sure yet how today was for the kids. On paper, it was another awesome day. Sam saw Cars 2 in 3D, his first cinema viewing experience. He got a plastic cup with an awesome Lightning McQueen sports car on it. Emily did some shopping. Lunch was tasty. All in all a good day.

[Minority report: Sam whined most of the day, the babies didn't sleep, dinner was a bit of a bust, Mom is tired.]

The highlight of the day though was perhaps bath time, pictured here in its full frenetic glory.

People are Messing With Us

So today I emailed the doctor and he sent back a ppt with Eva's electrolyte levels. The stinker's levels look entirely normal. I can't tell if this is because of the medication or if this has just been a big error. Good grief! More info to follow as we hear it. I may take this to the other hospital on Tuesday. All things in time...

Updates

No news on the genetic report or the blood test, but we hope we'll at least get blood results back soon.

Eva's still 7.2kg. She seems happy and healthy.

Next Tuesday we're going to University Research Hospital. It's an earlier appointment, so I may cab it with Eva and we're meeting a coworker whose husband works at the hospital. Part of our goal is also to keep people in the loop so that they know what we're up to.

The week after that is the regular pediatrician visit.

We're continuing to learn and read. I've posted several questions to the main B's internet group. It's been helpful in learning about others' experiences. If Eva does have it, her form seems to be milder than many. One of the only ones with a baby who has responded has a kid with the neonatal form. They've had to deal with feeding tubes and continuous vomiting and all manner of challenges. I think part of the reason this freaked me out initially is that there is such a wide range of experiences. Emily also talked to her friend Betsy today, and her husband had a kidney transplant some time back. Obviously, this is not the direction we're hoping to go, but it appears to be the worst case scenario. It's easy to forget that what we are dealing with is much milder than what many people face in daily life. This is all to say that we think Eva is doing fine and that things are becoming a little clearer and a little more normal to us. We're still hoping it's a big mix up and only time will tell.

It was a fun day with Sam today. My language classes got moved around, so I asked one of my teachers if we could pick up Sam and go to the park for an hour of class. Sam had fun looking at turtles in a reservoir and we went to the playground and he also was able to watch people playing baseball, basketball, and soccer. He chatted amicably the whole time and blew a kiss to the teacher when he left. His language skills are really coming along and he seems very happy. Tonight Emily built a "zoo" for him with blocks and he went to bed happy and tired. We're hoping to perhaps take him to his first movie in a theater this weekend. Cars 2 is out, if we can get tickets. We think he's ready, but he may still be a little little.

Local Research Hospital

Today we visited Local Research Hospital, which has a big name nephrologist who's treated lots of folk with B's. (I'm calling this Local Research Hospital because it's about a half hour away; next week we visit University Research Hospital, which is downtown.) This is the hospital that's doing the genetic research for us, so hopefully it may personalize the data for them.

It was a pretty funny meeting. Nanny Linda drove us there, which was very nice. We found the main office for the doctors, and it looked about how I hoped it would look. There was a hall of offices in one direction and a big pit of cubicles in the other. Several tables were piled high with copies of nephrology journals and kidney encyclopedias. We first met the pediatrician, who's doing a PhD under the main doctor, and then the main doctor showed up just a little later. He was finishing one meeting and on the way to the next. He kind of cracked me up, as almost a doctor stereotype. He introduced himself, reviewed a chart he'd made, answered his phone, gave his apologies, and left. Anyway, it was a funny encounter. The pediatrician talked t0 us more, showed us a chart they'd made based on Eva's blood tests that I sent, and got us registered and took blood. The urine test was a failure--they put the bag on after she'd gotten her blood taken, so I don't think she had any pee left to give at that point, and the bag wasn't sticking right. So we have to do that part tomorrow, but we can have it sent to the hospital.

I'm still not sure what to make of it all. This hospital appears to be the place to go for B's. I think they have more than 100 people they've worked with who have one of the two major kidney disorders (B's is maybe 30-40 people). This is also encouraging because it means, as I've suspected, that B's isn't really one in a million. It's probably one in a couple of hundred thousand, but just hasn't been diagnosed widely. This is probably a good place to find patients also, because where we are is: (1) a pretty big island with (2) a national health care system. So all of the patients are identifiable and will get funneled to a few hospitals in the city. In the States, you have dozens of hospitals per state, lots of confidentiality issues (it's difficult to share resources), and it's harder to fund rare disease research. Of course, there are drawbacks here, but I'm hoping if we can work with both systems we can get the help we need.

We're still not sure what to do with the medicine she's taking. As we read more, I can see why it is widely prescribed, and on the website it sounds like most people with B's take it. At the same time, I'd like to find out more about dosages, whether we can cycle off of it, mix it with food, etc. We're going to cut the dosage in half until we get the blood results.

Anyway, this is what we know now. Next week we'll see an endocrinologist. I'm hoping we get results soon, but it could still be a while.

Family Portrait!

We finally got a family portrait. Above are several versions of it (we took it on a white screen and they inserted these backgrounds later). We also have individual images for our visas. This may be a new family tradition. This was another picture that was a little challenging to take. Sam kept trying to flash the ubiquitous "v" for victory and Eva kept looking over at him. I had to rock her and back and forth so she'd face forward while Emily kept yelling at Sam between smiles. But the portrait turned out great, so I guess it was worth it!

Father's Day #2

Here they are in.... shoes! Yes, it's shoe season for the babies.
Here is Sam styling in his retro-looking toddler's swimming suit. We may be able to finance our retirement by selling this picture back to him when he is an adult.

Eli's plan for pretty much every day is: stand up sit down (repeat nine million times)
So, it's 8/8, or local father's day tomorrow. Emily kind of has already given me a delightful father's day today, with long nap, pool trip for Sam, and much togetherness time.

Bubbles

On Thursday (I think it was Thursday), the accountant on campus who has become our adoptive aunt came over and played with Sam. She'd brought a bubble wand. He had a blast.

Oh Saturday

Today was one of those Saturdays where we struggled with how much to do. Emily had wanted to go to the library and get some books for Sam. We had a late start out the door, and then made some wrong turns and couldn't find the library. We threw in the towel and went out for a long lunch instead. The babies got a bit of a stroll. When we came home Sam took a nap (he actually fell asleep in the car) and I took the babies for a longer walk, during which they slept. This was good because it meant they lasted longer, and now they (and hopefully Emily) are asleep.

Eva's looking good. She was 7kg again today. I just talked to the coworker's husband, and he's going to recommend a pediatric endocrinologist to us. This makes sense to me, although I wouldn't have thought of it. If it's not B's, then an endocrinologist may be able to make sense of blood levels and any hormonal questions. I still think it could be something else. A few days ago I read about a situation in 1980 where the ingredients in some baby formula led to a condition that mimicked B's (and helped prompt reforms in how baby food is made and regulated). Anyway, all things in time.

We've had beautiful weather the last few days. Today was blue skies and windy--a really nice day.

Nothing to see here folks...

We are plodding along. Beloved cat Theo passed away recently, so I was bummed about that yesterday and today. He was a very distinctive cat. We sometimes joked that he possessed a mix of traits from me and Emily: small head on huge body, black hair but fine and soft, a delicate meow and surprising speed. He liked to greet people at the door, but wasn't exactly an extrovert. Anyway, he was a good cat and we miss him. His life didn't start out great and he had some handicaps along the way. We met him near a golf course and left him in rural Ohio. I mostly remember him sitting on my chest and purring. Rest well furry friend...

On other news... we are re-engaging, ratcheting up, and escalating our medical inquiries. I just wrote to a friend of a friend in the States who is a nephrologist to ask for any advice they have (in English!) and we have an appointment with the main local expert I've been able to find for Tuesday. I also have written to a coworker whose husband is at the main national hospital. So, we may not have results soon, but at least we'll have some people who are experts and can review Eva's file with us. Yes, it's a little overwhelming, but probably less overwhelming than doing nothing for the next six weeks or so. Barb said she'd look into babies and weight gain, which also sounded promising.

That's our life. I feel like it's August and we should be enjoying leisurely travel and lots of time relaxing, and instead it's just a sprint of a month. I did five hours of class today. On the other hand, all the children are enjoying themselves. Sam is reading a book nearby with running commentary in local language: "He's wearing shoes... You're not wearing a hat?" I still admire his crisp little tones. It's the little cloth book with a mouse where you can practice tying strings, zipping and unzipping, fastening buttons, putting things in pockets, etc. This has been a good week for Sam because there's been a huge tree-removal truck on campus several days pruning and typhoon-readying the campus. Tonight a coworker came over and did bubbles with him.

I'm doing okay. I've started a novel, so that it a nice way to escape a bit. I have to be careful when I start books, but now seems like an okay time. I also have some overdue projects I hope to work on tomorrow. That's what we're up to.