Saturday, July 23, 2011


On Monday Joseph reported to the American Embassy to submit his paperwork for citizenship and a passport. Afterwards we spent the day wandering the streets of Auckland. Despite the fact that this is our third trip to Auckland in under two months, it was the first time we've really seen anything of that city other than the inside of Starship Hospital. I'm not at all a "city person" but I loved Auckland. The older buildings are stunning and abundant and well preserved. The contemporary architecture is unusual and interesting. The city feels clean, modern and pleasant. Later in the week I was able to take a short ride through some residential neighborhoods and was delighted by the most charming houses I have seen thus far in New Zealand.

On Monday night, Richard and the girls departed. Joseph and I stayed behind at the Ronald McDonald House so that he could report to the hospital daily for the rest of the week for appointments: nutritionists, geneticists, EKGs, blood work, x-ray technicians, eye doctors, liver specialists, lactation consultants, medical photographers....let's just say it was a busy week. It was also a hard week. It was also a week filled to the brim with graces.

There was lots of good news. Joseph's heart is healthy. For an Alagille patient, this is the very best kind of news. Alagille Syndrome often compromises the heart, causing heart failure at extremely young ages. Also good news: Joseph's liver functions were improved. This is the second best kind of news for Alagille patients, since liver failure is the other serious danger they face.  With an immense sense of relief, joy and gratitude, we learned that the worst long term outcomes seem very unlikely for Joseph.

The only truly serious issue is that Joseph's liver - though functioning better - is inherently impaired. This we knew already. Among other problems, it doesn't allow him to absorb needed fats and certain vitamins; hence he is smaller at four months old than his sisters were at six weeks old. In an attempt to provide him with a form of fat that his body can easily digest, a prescription formula was ordered and we began the painful process of switching Joseph over to formula and a bottle. He was completely outraged. It probably didn't help that (having never even owned a baby bottle before) my ineptitude with the bottle included gagging the poor boy several times. He was patient with me for a little while, even smiling with pinched-shut lips. He must have thought I was trying to be funny. Then he got hungrier, angrier, more heartbroken. I conferred with lactation consultants for ideas to help him make the transition. He tried to disown me. By the time we were ready to go home, the hospital staff was forced to realize that they were not dealing with a docile Kiwi baby. Joseph was simply not going to give in gracefully. Stubborn.  I'd blame it on the example of his father, except that his mother is just as bad. No, worse.

you have GOT to be joking?

So the specialists scrambled for another idea. Plan B is that Joseph may eat as he pleases, but with each feed he must permit 3 mLs of liquid fat supplement to pass through his obstinant lips via oral syringe. If he doesn't start gaining 30 grams a day on this plan, the next step is a feeding tube. He accepted these terms graciously and we were finally allowed to return home.

I'll smile if you throw that yucky stuff down the sink

Other than this liver/growth problem, the doctors could find nothing substantially wrong with Joseph. That sounds great...except that they "needed" to find two other issues in order to confirm his diagnosis. A definite diagnosis of Alagille is contingent upon the patient presenting with three or more clinical signs (out of five possibilities). So we left Auckland sort of up in the air again about his diagnosis. It may be an odd case of an incomplete manifestation of the syndrome. It may be an incorrect diagnosis. It may be that Joseph is being healed.

The first day up at Starship this week, a specialist was listing off to me all the "bad things" Joseph was going to face during his life because of his Alagille Syndrome. Suddenly, a little voice inside me said, "Whatever. Joseph is going to be totally healed of this." Although many people have urged me to pray for this complete healing, I have to admit honestly that that is not where my expectation has been all this time. That night, back in our room at the Ronald McDonald House, I unpacked some blessed oil Richard has been using to anoint Joseph every night. We were given the oil on the day Joseph first became ill by a charismatic priest who prayed over him and prophesied that Joseph would have "strong legs for playing sports". At the time, that prophesy seemed quite flaky to me - we only thought that Joseph was jaundiced and perhaps had a urinary tract infection. There seemed no reason to doubt that he would ever be strong enough to run around and roughhouse with other boys. It was weeks before Fr. John Rae's words "meant" anything to us. So this week, for this first time, I laid hands on Joseph's little tummy and prayed in Jesus' name for complete healing and for a manly adult stature and strength. From that point on the doctors could find nothing substantially abnormal with Joseph. His bilirubin count dropped into the normal range for the first time since he was 6 weeks old. Not only did every test of his spine, heart and eyes come back perfectly normal, but over the remainder of the week he gained weight at the rate of a "normal" baby without swallowing a sip of formula and without actually starting the fat supplement. Only time will tell if Joseph was blessed with a miracle in Auckland this week. I experienced so many smaller miracles and signs during the week there that there seems to me to be every reason to believe it will be so. Praise Jesus for the good news of health already received and for the hope of more to come.

Saturday, July 16, 2011

bops and mops

One year ago this month, I posted a photo of Maria running the vaccuum and joked that I would have Bernadette (who calls herself "Boppy") learning to mop next. Today that prophesy is fulfilled. 

Even I can't mop with one hand! She actually did a decent job, although she couldn't wring the mophead and left three inches of water on the kitchen floor when done. Maria was crazy jealous and insisted on mopping the bathrooms. Sometimes sibling rivalry can be turned to a parent's advantage.....

I'm not sure that this is really "blog material" except that so many people in NZ and America have joined me in my prayers for more female assistants in this mission. And in less than a month, I get Christine to help with ministry and two housemaids to help me keep up with the domestic end of things! I wonder what I should pray for next? Maybe Joseph could learn to cook or fold laundry.

yeah, that's funny!

Tuesday, July 12, 2011

pyrrhic victory

What the Lighthouse males lacked in creativity, innovation and artistic finesse
 they made up for paint. 
and graffiti. 
 or did they? 

Over the semester break, we'll have our work cut out for us in returning the wall to a condition of pristine white-ness. Richard told me that the younger Tahu students were enjoying watching the unfolding drama of the wall-mural-war and I'm sure they will be disappointed to have the blank wall back as well. But who knows what fun pranks and hijinks await us next term!

In the meantime, I've turned my creative energies in the more peaceful direction of making a cast of saints to complement the crowd of Biblical figures I made last year.

I thought (before coming to NZ) that I might do a little ministry with these dolls. I imagined organizing an occasional children's Holy Hour  or doing something with them for mothers & preschoolers.

For now, my hands are quite full and that dream will probably wait for a bit, but Maria and Bernadette have really enjoyed watching the little dolls act out Scriptural and hagiographical catechesis at the dinner table - as have some of our dinner guests. 

Aside from frequently burnt fingertips from the glue gun, I've had awesome fun making them. I'm more refreshed by a little project like this than by any other kind of "relaxing". Sadly it's been something I have not engaged in much since being in NZ - for many reasons - but am determined to get back in to. And as I write, the wheels are turning, and I'm thinking of Christine coming (insert dramatic talent and creativity in abundance), plus the girls' group (add lots of creativity, more dramatic talent and love of artsy projects), plus this idea about a children's Holy Hour - maybe we'll make our own puppets or costumes and act out something of catechetical value for some little ones as a part of girls' group next term. I can't see the "BOYS RULE-  YOU LOSE crowd" doing much to thwart that, but it could be a lot of fun nonetheless! 
my favorite: 
the simple generic virginal martyr

maria's favorite:
the saintly princess/noblewoman
(proof that the apple can fall QUITE far from the tree!)

Saturday, July 9, 2011


There's an angel coming to Mt. Maunganui! Richard's sister Christine has decided to join us here early in August and we could not possibly be more excited. Maria is so excited that she has already covered the door to the spare bedroom in "welcome Aunt Christine! art" but Rich and I are not too far behind Maria in terms of joy. I've made a sign and stuck it on the door too.

Christine was visiting when Joseph first became sick and she had offered on the spot to stay behind to help out. We were pretty piteous at the time and Christine's generous heart couldn't help but be moved. There were several practical points to consider before a decision like that could be made - we all decided to wait on God's will to manifest itself. In the weeks that followed, impeding circumstances changed, signs were given, peace short, the Lord seems to be in favor.

I have been praying - hard - for a good woman to come along and help minister to the girls' group. Not only is this prayer answered as perfectly as I could possibly have hoped, but the girls have already met Christine and absolutely loved her. They are thrilled and there's peace in knowing that it's a good "fit". I can't guess what other types of service Christine may find herself called to give during her time here, but the young women of the parish will be richly blessed by her presence.

Christine's decision also blesses our family tremendously as we continue walking with Joseph on his journey. There have been so many hospital stays, tests, doctor visits and other medical appointments - and this has affected our girls - they either are dragged along to these things or abandoned by Mama for days at a time. They have watched Joseph get stuck with so many needles at this point that Maria's play with her dolls is peppered with words like "biopsy" and "jaundice" and "blood test". Bernadette asks daily, "Go to Auckland?" (she pronounces it Aw-twind) and she steals the oral syringes we use for Joseph's daily battery of vitamins to pretend to give Maria shots. Despite this, and all the attention that they see Joseph getting in medical offices, at church and at home (it takes a long time just to get all those vitamins in the little guy!) they are coping beautifully and seem to think it's all rather normal. Maybe they just assume that that's what boys are like, always rushing off to the doctor and such. Nevertheless, I'm relieved to know that there will be another beloved adult around the house to help fill in the gaps in time and attention that the girls may be missing.

Wednesday, July 6, 2011

tentative diagnosis

Joseph's liver biopsy showed a reduction in the number of bile ducts consistent with Alagille Syndrome. The doctors are not 100% sure that Joseph has Alagille Syndrome, but it seems like the most likely diagnosis to them at this point. We are to return to Auckland so that Joseph can undergo tests to confirm this diagnosis. Richard, the girls and I will also need to be tested for this genetic disorder. There is a broad spectrum of severity for Alagille patients and there is no way to predict right now how intensely Joseph will be affected by it. Richard and I know very little about Alagille Syndrome in general or about how it is affecting or will affect Joseph - the doctors from the hospital did not end up calling us as planned; once the call was two days late we contacted the pediatrician who first caught Joseph's liver problems and he obtained the biopsy results for us. He did not have too many specifics on how the specialists planned to proceed, etc... other than that they would need to do further tests on Joseph and the rest of the family, probably in the middle of the month. We hope to speak to the specialists this week.

Friday, July 1, 2011

mini march for life

This morning we saw a dream fulfilled!
As part of our "evangelization term", we invited the youth to join us
 in public, peaceful, contemplative prayer for unborn babies... 
we were surprised & delighted to have so many adults participate as well. 
Because this kind of public demonstration is so uncommon in New Zealand, 
we expected no more than 10 people to attend -
 instead we had more than triple that number.

Right after morning Mass we stood on church property near a busy road with a few gentle posters
 praying, singing hymns and enjoying good fellowship.
 After praying a Rosary we walked up to a major intersection 
and stood there for another 45 minutes or so.
We offered prayers for better laws protecting the unborn, 
for mercy & peace for those who are haunted by involvement in an abortion,
and for courage in any girl currently feeling pressure to 
end the life of her child.
It was encouraging to have many, many cars honk in support of the cause
and we intend to regularly repeat this vigil on the first Saturday of each month; 
hopefully each month our numbers expand.  
There are about 18,000 medical abortions annually in New Zealand
but abortion, like most other controversial or sensitive issues, is a true taboo here.
We were elated to see so many of the youth willing to do something culturally radical 
to stand up for unborn children and their mothers. 

some of the youth who attended 
(they worked up an appetite during the pro-life event
and an impromptu McDonald's lunch followed)


The biopsy is over - only a tiny band-aid marks the site. There were no complications, praise God.

It was a hard day for the little man. His sleep was destroyed the night before - nurses woke us at midnight and at 2am to try to insert an IV to correct a vitamin K deficiency discovered late that night (apparently this deficiency would negatively affect his clotting during and after the procedure). At 4am I had to wake him for his last feed - he was required to fast prior to the biopsy. At 5:30 am he woke himself, hoping for a snack and was miserable when denied. For the next four and half hours he wallowed in misery, doing his best to communicate his hunger. The 10 am procedure took about an hour and he spent the rest of the day nauseated, vomiting and generally unhappy.

The next morning Joseph was back to his usual smiley self. I was packing up our suitcases when the doctors suddenly started talking about him staying in the hospital for a week. Finally they decided it made more sense to discharge us for a few days and bring us back up to Auckland after the biopsy results are back. And so, we wait. We should get a phone call on Tuesday with some kind of diagnosis. On Wednesday or Thursday they want us to return to meet with the whole team of doctors who have been involved in his care. At that point they'll explain the diagnosis more thoroughly and give us a sense of what the coming weeks, months and years may hold for Joseph. Other specialists will meet with us too - for example, a nutritionist will evaluate the effect Joseph's liver functions are having on his meager weight gain and will prescribe appropriate supplements.

Up until now it has seemed easier to believe that there'd be a simple and "easy" answer to all of this. Today the crushing weight of more serious possibilities looms larger than I had thought possible even just a week ago. We appreciate continued prayers for renewed peace and trust in the Lord.