One Week to go!

Jill continues to take small but encouraging steps forward.

First, up to this point Jill's disease has left her completely unable to move her tongue.  However  this week she was very excited and happy about her renewed, albeit slight, ability to move her tongue.

Second, she has shown poor coordination in attempting to simultaneously complete two motions or physical actions. For example, tossing a ball underhand requires the arm to swing and the fingers to release at the right moment.  This has been too difficult in the past. Today she is able to toss the ball with good timing of release.

Third, she has been able to take sips of soda which she had given up on before we arrived in Delhi.

In other news of the week, I picked up some sort of bacterial infection or stomach virus that lasted three days ; these are the kind of details I look forward to keeping you appraised of on the blog.  I stayed in the clinic as the staff nursed me back to health just in time for our visit to the Taj Mahal.

Jill's sister Erica arrived on Thursday afternoon and hit the ground running. We left for Agra (Taj Mahal's location) Friday morning and then continued to the princely city of Jaipur on Saturday afternoon.   Despite the relatively short distances of approximately 150 miles of each leg of the journey and the fact that most of the trip was on a divided highway, the traveled at best at an average of 35 miles per hour.  I was very glad to be in the capable hands of a driver, within a nice roomy vehicle, as we watched the freeway extend from 2 lanes to 4 or 5 on numerous traffic-rich occasions.  We stayed in two nice hotels  and guides showed us around both destinations.  My only regret is that we didn't have a little more "pool time".

Despite the 110 degree heat and the 5 hours in the car, Jill handled the trip quite well. No doubt the addition of her sister played some role in keeping her spirits high for most of the trip.  

In Agra we saw the Taj Mahal and the Red Fort.  In Jaipur we saw many more less famous sites that can be seen on a website that  I  stumbled on - http://www.jaipur.org.uk/jaipur-photo-gallery.html  

Seventh Week

As I write, it is 111 degrees, making it very difficult to go outside for anyone and in particular, hospital patients.  The fortunate people stay indoors with the AC on and avoid the midday heat so long as the power is on.  Power outages, however, are common in India and of course when everyone has their AC going full blast, the chances go up. A big business here is back up power generators.

Jill really enjoys the company of the other patients at the clinic who congregate daily in the lobby or out front when it cools off a little. They offer lots of encouragement, give her a break from her parents and give her a feeling being part of a social group.  Also we arranged a massage for her as well as a trip back to the Dilli Haat market to buy some gifts. 

 On Friday of the seventh week Jill had her second intensive procedure receiving a dose of stem cells in the lumbar area.  The toughest part was staying still for 5 hours and in bed until the next morning.

 Jill's balance seems to have taken a turn for the worse this week with several near falls and real difficulty standing up straight.

The doctors say that it is normal to have good and bad weeks and, in an ironic twist, they were encouraged by some emotional moments this week- Jill was sad more often and for longer periods than normal.  They said that that this indicates improvement in her ability to understand the seriousness of her condition.   

Because the hospital is closing at the end of the month the patients are starting to thin out and there are only eight patients left with a full staff.  I am hoping this results in extra attention for Jill.

We look forward to Jill's sister Erica's arrival on 5/21.  She will be here for 6 days and we have arranged to take a trip to Agra (Taj Mahal) and Jaipur over a long weekend.  

This is the week that I can honestly say we have started to notice some progress in Jill's condition.  Several days ago some of the other patients and family members started  telling me that they noticed Jill's walk improving. Honestly  I didn't really see any change, however over the last couple of days we have noticed that her balance is improving and her walk has improved slightly.  Although  few and far between she has also managed to say  a few words that were understandable.  The doctors noticed as well and informed us on Friday that they will be stepping up the stem cell dosage. So, I think we can say that it was week 6 when we noticed something changing.    We just pray that the progress continues and possibly accelerates.

The clinic is starting to thin out a little bit due to its closing down in June for renovations.  The fact that patients come here for  a minimum of a month tells me that we are going to finish off our stay with the clinic at 50% occupancy. I'm hoping that means there'll be plenty of focus on Jill.  Another method of administering stem cells that seems very odd to me has turned up.  For the last several days they have  been giving Jill a topical dose of stem cells on her tongue and in her mouth.

India is in the midst of its elections which take several weeks and if I understand correctly all the votes are counted manually.  Election day here in New Delhi was on Thursday and the temperature has fallen this week to a moderate 106 degrees.  

Jill's weekly activities included a trip to Dilli Haat on Monday, a market that sells regional crafts and food.  Every two weeks the market changes vendors so we can go several times and not see the same things.  Jill is not much of a shopper but she fell in love with some beautiful marionettes which she purchased and is quite pleased with.

Wednesday Jill had her Pic line removed.  This is a long term IV tube that was part of an antibiotics delivery system that she no longer uses.   She was very happy to have one less reminder of her condition. Now if she could only get rid of the feeding tube!

On Thursday, Jill's high school friend Alvin visited Jill again. It is very nice to have some company, particularly one of Jill's closest high school friends.  We tried to take him to Dilli Haat, but due to the election in Delhi most businesses were closed,  so Alvin missed it. The normally packed and noisy streets were eerily quiet that day.

On Friday, Jill splurged and got a on pedicure ($4.00).  Next week she'll  will start getting  a weekly massage ($10 for 90 minutes).  

We're half done!

This week started off with Jill moving to another hospital for a three-day procedure.  She headed to the other hospital by taxi at 11:00 AM, settled in her new room by 12:00, and was whisked out of the room down to the OR at 1:00.  The main procedure took about 45 minutes and involved inserting a very small plastic tube through the side of the spine into her cerebrospinal fluid and pumping stem cells around the spinal cord. The procedure turned out to be the easy part- the 5-hour period laying down on her back without moving appeared as the most difficult part of the task.  The two bricks under each of the lower legs of the bed, acting to tilt the bed in order to bias stem cells toward the brain, did not improve these comfort levels.  Let's just say we don't want to repeat the last few hours of that ordeal.  In comparison the balance of the three-day stay was a breeze.

 

Many of the patients suffer headaches and other side effects as a result of the procedure- thankfully Jill had none.  The balance of the week she went back to her physical and cognitive therapy.

 

We have been told by Dr Shroff to expect to see some results within a week. So far we haven't noticed anything but remain hopeful that we will see something soon.

 

It has been a hot (around 110 degrees), dry and dusty week in New Dehli, so trekking around the city during the day is not a really appealing to anyone.  However we braved the heat one day and visited the largest Hindu temple in the world, BAPS Swaminarayan Akshardham, http://www.bbc.co.uk/religion/galleries/hindutemple/  .   Turns out it is built recently, has a staff of 800 employees and is free.