show details Mar 27 (2 days ago)
This past week we spent three days and two nights at Guatum Nagar, the big hospital, or "Gotham City" as the Aussie's say. While we are at that hospital we don't have access to the internet and I have not had much luck getting online since our return. I am not sure why, but it is very difficult to go from link to link even when we do get a connection, thus, the scarcity of our emails. Shannon is using her IPhone to communicate via text messages alot.
Shannon had an epidural in place during the entire time we were at Gotham with stem cell infusions morning and evening. She had sensations in all limbs and her core during the infusions which is what the doctors want. The sensations are not necessarliy new and they come and go, but it is important that she is getting responses. Of course, the task then becomes one of trying to make the sensations stronger.
She will resume regular Physio on Monday. Fatigue is a major consequence of the stem cell treatment so we spend quite a bit of time in our room or just hanging out with the other patients and families. She has made a lot of new friends.
Shannon continues to have the same sensations as noted in the past. The greatest change has been strength in her core. The calipers she wears to hold her in a standing position have a binder that is much like a girdle around her waist. The PT, Sonia, has been releasing it a bit at a time. This means that Shannon must use her core muscles to maintain her balance. So far, she has been able to do so. She is not able to balance more than a few seconds at a time, but she is doing it! The afternoon physio is the one during which she stands. One result during this action can be a lowering of blood pressure and she gets a bit light headed sometimes, but overall, this is wonderful progress.
We have just over 4 weeks remaining. I think she will have a major procedure each week until we leave. The other quads who have been here told her this is the common protocol. So, we may be going to Gotham City each week.
Last Sunday we went to Agra to see the Taj Mahal. It just happened to be the hotest day ever recorded in March . For those that don't know, quads can't perspire, so their bodies don't regulate temperature very easily. Shannon and Tim (the young man we went with) over heated. It took awhile to get them cooled off. Tim's dad and I poured cool water on them, literally, for about an hour and used cold packs on pulse points to speed up their cooling. Fortunately it all worked out. I had frozen a liter bottle of water for Shannon to hold on her lap and use to dampen a neck cloth. It melted in about 30 minutes! Pretty quickly.
We loved the Taj of course. It is a wonderful compound of amazing structures.
The drive to and from Agra from Delhi was culturally facinating, too. So many sights. The road was mainly one lane each way with a short divider between the lanes, thankfully. I have found that on streets or roads that do not have the dividers there is no "firm" rule to stay on your own side of the road. Here in Delhi, it is common for people to go around cars lined up at street lights by going into the on-coming lanes and cutting in at the front of the line!!!!! We have been in a few taxi's that have done so. Needless to say, fervent prayers are expressed during those times.
We saw small wheat fields being harvested by hand. Families were cutting wheat and bundling it up. They took it to another area to thrash by hand. Then the grains ended up in town markets to be sold. ( I have walked by many women sitting on the ground cleaning and sorting small bags of grain by hand.)
We also saw huge "bags" of grains being taken to be sold somewhere. The larger bags were the size of a 1/2 to 1 ton truck but made out of canvas. The bags were suspended from wooden frames made from tree branches. I don't know what kind of wood, but certainly very hard, hard wood. These larger quantities of grains were pulled in all sorts of manner. Tractors, regular truck cabs, but also cattle. In some areas, cattle were used to pull a variety of wagons.
We also saw a number of "smoking towers" off the road. I realized they were kilns used to bake bricks. At some kilns, there were small brickyards. But it seemed that most of them were just out in isolated fields.
There were a number of stone tombs along the road side. They tended to be made of red or white stone or
and most of them had flowers on them. Some of the tombs were quite large and very pretty.
Mosques and temples
We also saw a number of temples and mosques, and even one Baptist church. The temples and mosques tended to be a bit more elaborate than the church.
We saw numerous monkeys. At a restroom break, a monkey handler had a mother and baby come to our windows. Sooooooooo cute! Teeeny tiny baby. Looked like Shannon's Rockie. We had to pay him to take pictures of them. He wanted 500 rupes, but we gave him 200. 50 rupes = $1.00. There were also monkeys at the Taj on the grounds. Our tour guide said they often charge at people when they see cameras as the think they are guns.
A camel. A camel pulling a wagon full of stuff to take to market.
Many many cows and goats of all shapes and uses.
By the way, the cows and camel were sharing the road with the cars and trucks, so we had to go around them when we got a chance to pass.
We passed through a number of villages/towns along the road to Agra. Each time we went through a village we had to slow way down due to the animals and slower traffic. The villages are old, hundreds of years old. Dusty, dirty, and very poor. So many people living out in the open, begging, eating out of trash areas. I saw some families actually living in tents in garbage dumps.
Huts-there were many mud huts with dung for roof tiles. I realized after a couple of trips in Delhi that we are in very nice quarters, but the primitive conditions that abound throughout cities and villages can't be exaggerated.
The towns are old and the infrastructures (streets, buildings, sewers) ancient (ditches in front of buldings for toilets and drainage). I can't image how they could modernize--so life goes on as it is. But there is an abundance of labor, so who knows!
As I said in an earlier email, much of the work to modernize Delhi is being conducted by women. Women who carry large platters of "cement" to help pave the city, their toddlers playing at their feet or helping to pat the cement into place.
That is all for now. It is close to midnight here and I am ready for bed. Shannon is asleep. As I said, stem cells require a lot of energy and she has been sleeping more this trip than in the past year! They are also slow building blocks. As I remind Shannon, even in normally developing infants, it takes a long time to build connections.
Love to all, Lola and Shannon