Travelling with a Food Allergy Kid

Many of you that read this are familiar with Nitara's story. Some of you aren't so I'll share the details. Nitara has a special kind of food allergy called eosinophilic esophagitis. It took us longer to diagnose it than to learn to say the name. It's also called EE. Basically Nitara is allergic to the proteins in most foods. If she eats them, white blood cells will infiltrate her esophagus thinking they are pathogens and the result is a swollen esophagus, pain, difficulty swallowing, nausea, vomiting, and so on (a long list of "so on's"). She was put on a feeding tube at 3 months old but was not diagnosed with this until almost 3 years old. Strangly enough, even though there is no cure for EE, we are relieved to finally know what is going on and how to treat it. The way Nitara is being treated is to depend on most of her nutrition from a special formla where the proteins are broken into amino acids so the body won't react to them. We are slowly introducing food back into Nitara's diet but it's a very long process. At the moment it is easier to list the foods she can eat rather than the ones she can't. She can have potatoes, carrots, broccoli, and trying apples. Also three kinds of oil (safflower, sunflower, canola), salt and cane sugar. She only eats small amounts of these foods but it's important to keep up her eating skills.

Through many emails and phone calls my mother in law finally located some sunflower oil so we can cook Nitara's potatoes! Carrots, broccoli, and apples can all be found there. But what they don't have is Nitara's favorite snack, Lays chips. Lays has a version that is made with sunflower oil. You can't find these in India. If I brought large bags of Lays they would go bad in the humidity within a couple of days. So I searched high and low for snack sized ones and finally found them in a package of 20 chips. I bought three of these bags to get enough Lays plain chips to last the trip. And filled one small suitcase only with Lays. I think the rest of our family is going to be eating flavored chips for weeks to come when we get back!

Also coming with us are a small jug of free and clear laundry detergent, 30 bags for her feeding pump, the pump and recharger and all that, feeding syringes, med syringes, a whole lot of medicines (she has asthma, environmental allergies, and GERD, too), and 18 cans of Neocate Jr. formula, 16 of which will be hand-carried to ensure that they are not stolen out of the luggage. It's very hard to find her special formula in India. Nitara is not going to eat any of the meals on the airplane (which is fine because Vignesh will probably want them), and it's going to be a challenge to tell extended family not to offer her food. More importantly not to feel sorry for her in front of her, to shake their heads and click their tongues in sympathy. Nitara has a wonderful attitude about it all and I don't want her to consider that she should feel sorry for herself since others are making such a big deal about it. At home we have a safe haven for her but it's going to be different outside of our own home.

But that's life. Given all her medical issues Nitara is doing remarkably well, talks up a storm, is happy most of the time, lots of energy, and very big for her age. And so we will embark on our journey with all of this extra stuff. I would love to see the look of the baggage inspector when he or she finds a whole suitcase full of Lays!

Abi has started her own blog here: http://abisindiablog.blogspot.com/
If you have kids she would be thrilled to get input from them and will try to answer their questions.

Okay, off to bed. Next post should probably be from India!

Viewing Photos

I am going to be lazy. Sorry. I am going to put most of my photos up on the CostCo website so I can print them right from the same album when we get home. If you don't have a CostCo account just sign up (it's free and you don't need a CostCo membership).
http://www.costcophotocenter.com/login

Finally!

After 14 weeks of processing, numerous phone calls, and lots of worry, Abi's passport has finally arrived! She needed a new one because her old one expired. Vignesh actually had an appointment next week in the San Fran office to collect the passport personally if it got down to that. With only 10 days to go, that is cutting things very close.

We have 70 pounds of luggage per person. Most of this is going to be gifts and gear for everyone else. A little bit of it will be our clothes. I found out that Nitara can sit in her carseat on the airplane. At least that's one less thing to check in. The relatives want things like Ben Gay, Tums, vitamin tablets, chocolates. I'm sure a few things will be requested this week. In addition we need to buy everyone gifts. Big gifts for the closest family members, little gifts for everyone else. I'm still working on the little gifts. I did manage to score with bags of various sizes of chip and bag clips at IKEA. I think I may go back to get more stuff from there after talking with Vignesh. I have so much packing to do. My head is swimming.

Fatalism and Carseats

The differences that I have found in India go much deeper than just the food, music, and dress. It is the way of thinking. For example, one does not say "no." You say "yes" but you mean "no." If you really mean "no" you say "maybe" instead of "yes." I have come across as a very pushy person because when someone gives me a wishy washy answer I try to get them to be more specific and the answer just gets more and more muddled. On my last visit there I stayed 2.5 months. I was housebound for much of that trip after my husband left. At that time his family was very busy. His mom worked full time in the home office, as did his brother in law. His sister was not that busy but she still had to keep up her apartment which was a few miles away. She did not always get use of the car to take me out or to visit, and it is she who I get along with best. My father in law was newly retired but he spent the mornings running errands and shopping for the day's food while my mother in law was working in the office. In the afternoons he met with the architect and other related people for the new house that was being built for my husband's sister, as she was newly married. They had to oversee every single detail. Of course I was last on their minds. In the states I led an active life of meeting other moms, going to the park, library, bike rides, stroller walks, the zoo and so on. In India there was really no place to walk by myself outside of their small street (and how often can one do circles?). No clean playgrounds or parks, no public libraries, and I of course did not drive or attempt to ride a rickshaw alone with a baby. If I did, I wouldn't even know where to ask to be driven. So I was desperate for diversion. I would ask someone to please take me somewhere when they were going there. They would say, "Maybe later." I would ask "when shall I be ready?" and they would say "maybe this afternoon." Thinking that was the answer, I would ready myself and wait, and wait, and wait. And no one would ever show up to take me out, and it became clear as the afternoon progressed that plans had already been made previously and it did not involve taking me out. I wish I could have just been told "Not today, we already made plans" but things don't work like that over there.

There is also an attitude of fate or karma playing a huge role in one's life and what happens. Here in the US parents are so safety-minded. It might be to an extreme, but every parent wants to protect their child, right? Parents in India don't love their kids any less but they do take more chances with the kids, and with themselves. Things that common sense would dictate that you just don't do with children. Some families simply have no other choice. They cannot afford more than a bike and people still need to get from point A to point B. You see things like this and this. Keep in mind that they are riding through heavy traffic as shown in the video clips I provided previously, with big trucks, busses, and crazy honking drivers all around. But you have no choice. You see a lot of this, too. And this. The two-wheeled family car for the ones who are slightly better off than the bike riders. Again, in the US we would not imagine doing this but in India and probably most places in the world this is something that people do. Lastly, for those who have a lot of money, you see this. The whole family crammed into the car, saving space by putting kids on the laps of parents.

So why do these well off folks, who can afford a car and can presumably afford a carseat as well, choose to endanger their children like this? Being a huge carseat advocate, it triggers my ingrained sense of fear when I see kids riding unrestrained. There are carseats available in India. Not widely, but you can find one if you ask around and have money in your pocket. It comes down to several factors:

a) Most people in India do not have cars, the vast majority in fact. This is in contrast to the US and Europe. The government is not going to spend its precious public ad campaigns targeting the few rich when they can better spend it promoting the welfare of the many poor and almost poor. Things such as birth control and family planning, education, child welfare, pollution. These are much more pressing matters that keeping the kids of rich people safe by using carseats. People who own cars simply are not aware of the need for carseats. There is the common belief that they can just hold onto the baby tightly in a crash, and that the baby is more comfortable in someone's lap. In fact, 8% of the world's auto fatalities happen in India, about 90,000 people per year. That's a lot, considering that only a small percentage of people there own a car.

b) There is a general sense of fatalism that is part of the cultural and religious beliefs. India's culture is based on a caste system. Although there are efforts being made to do away with it, it is so ingrained in the culture that it will be a very long time before people will not see themselves first as a member of a certain caste and second as an individual. The caste system is determined by fate of birth, and many believe it is because of actions taken in your last life. Same with poverty-- the people are born into poverty because they were meant to be. Next life, they might have better luck. This is their fate in this life and the sooner they accept it the less miserable they will be. It is a necessary tool of survival especially for someone who is born into hopeless poverty with no real chance of ever escaping it. India does not have goverment welfare to the degree that we have in the US. Here, you are poor if you drive a junky car and live in a junky apartment and if the car breaks down you have to take the bus to work. In India, you are poor if you live on the street, your kids live on the street, and you all might get lucky and be able to afford a run-down apartment which you will share with 20 relatives. If your kid gets sick you help them as much as you can and pray a lot, and if they die, well it was just their time. In our country we have such a sense of entitlement and perhaps that also extends to our expectation that we will live a long and healthy life. We do everything we can to protect that life. Many Indians feel that if it's their time to go, then it's their time and it's no use preventing it. So if they are riding in a car and die because they were not wearing a belt, then it must have just been their time. Otherwise they would have made it home safe like all the other times they have ridden home in the car over the years. Enjoy life to the fullest today because you just never know about tomorrow.

Several years ago my husband's sister's husband was driving home from a temple event with some friends. They also gave a ride home to an elderly priest. The three young men buckled up but the older priest did not. They were hit by a drunk truck driver. The three young men walked away, the priest died in the accident. We were all shocked by this and expected them to be too. They were sad that the priest died, but the attitude was that he was old, he had lived a full life, it was his time, and wasn't it fortunate that he departed on such an auspicious festival day.

This whole carseat thing has been driving me crazy. I am planning to bring both girls' seats and one for my nephew. I don't care if I have to leave other stuff behind. I will only care a little that they get annoyed that the kids take up room in the car and can't fit on someone's lap to save room. As I posted before, I bought my sister in law an infant seat to use when she had a baby. Then found out they had not been using the seat when he was a newborn, and then when they tried to use it later they stopped because he cried. I sent a bunch of crash test videos of kids riding on people's laps, some websites about carseats, and a loving note about how much we cared about her son and would hate to see anything happen to him. All the previous times that I had asked her how the seat was working out, if they were able to install it okay, I was given the yes-that-means-no answer, the polite but frustratingly unenlightening answer. Finally found out the truth. Beyond a certain point I can't do more than to say I've tried my best. And on the other side, they are probably thinking I'm some crazy, safety-obsessed woman who should just relax and enjoy life. Maybe we are both somewhat right.