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.