Cash is in the hospital with pneumonia. I hear he is getting better, so I'm sure Josh will write an update soon. In the meantime, I'm at home and sad.
Monday, January 31, 2011
Saturday, January 29, 2011
Another rough night
Cash is back on IV antibiotics. Earlier yesterday he had his blood drawn and the white blood cell count came back over 23,000. It should be closer to 10,000 so we know he is battling some kind of infection. His head is congested so we nebulized him a couple of times. His fever shot back up and we had a hard time getting it to come down despite syrups and sponge baths. The pediatrician came in around 10pm and nurses were in and out until the early morning hours. Today we are scheduled to take him for a chest X-ray.
Fever dreams
Cash is sick. Last night he had a fever of 101. Pretty low-grade. The attending physician wanted to start antibiotics right away but I talked him into letting us give him fever reducers and see if wasn't better today. Many times Cash has spiked a fever at night and been fine the next day.
We have continued the medications today but the low-grade fever (99 to 101) persists. Cash is low energy and sleepy. We are letting him rest and hope that he can bounce back by Monday. No therapy today or tomorrow so that's good.
It is so hard when he's sick because he whimpers and talks in his sleep (with his hands). You just want to do anything to make him feel better.
We have continued the medications today but the low-grade fever (99 to 101) persists. Cash is low energy and sleepy. We are letting him rest and hope that he can bounce back by Monday. No therapy today or tomorrow so that's good.
It is so hard when he's sick because he whimpers and talks in his sleep (with his hands). You just want to do anything to make him feel better.
Friday, January 28, 2011
Want some candy, little boy?
As always, Cash has charmed the patients and staff here at the clinic. I'm just amazed at the extent. The 'Sisters', as the nurses are called, have clucked and cooed over him from the start. Now they have developed a routine where after his morning PT Cash gets in his walker and strolls into the injection room to see them. They hide candy in a drawer and he goes to search for it. I finally had to tell them that he does not eat the candy, he's just there to flirt. They were delighted.
I was surprised the other day when Jhoti, the no nonsense General Manager of the clinic offered Cash cookies and then hurried away to get them for him. She even announced that eating food was not allowed in the injection room as she gave them to him. Now he's got the GM fetching him biscuits!
That boy has got some mojo.
I was surprised the other day when Jhoti, the no nonsense General Manager of the clinic offered Cash cookies and then hurried away to get them for him. She even announced that eating food was not allowed in the injection room as she gave them to him. Now he's got the GM fetching him biscuits!
That boy has got some mojo.
Not the center of the universe
For some reason, not very many Americans visit India. Few Westerners in general and Americans compromise maybe one out of ten.
One of the second or third questions an inquisitive Indian will ask you is where you are from. A little boy from a small village near Jaisalmer, Rajasthan asked me this. "The U. S.," I said. I almost never lead with 'America' when traveling because I've learned first hand that it offends South Americans (American? Really? Me too.)
He shook his head. "The United States." No. "The United States of America?"
Brow furrowed, no, he still did not recognize that country.
"Is it near England?" he asked.
"Relatively, I guess. Do you know where Canada is?"
Yes, his eyes brightened, he had actually met some people from Canada before. "Well, we're just south of them."
Although many Americans fear that the rest of the world despises them, in truth much of the world neither knows nor cares about our policies, politics, or pop-culture. I find that somehow comforting.
Thursday, January 27, 2011
A beautiful mind
"Don't expect miracles. It's not magic. Be patient, it is a very slow process. There are no guarantees." -Dr. Geeta Schroff in today's meeting
If, like me, you were intrigued by the SPECT scan results seen in the last post then I would like to share with you the scan of Cash's own brain.
This was taken when we arrived here in December, before any treatments were administered. In cold, clinical terms you are looking at "sever hypoperfusion in bilateral frontal cortices, moderate to severe hypoperfusion in the bilateral temporal and cerebellar regions, mild hypoperfusion in right occipital cortex."
At the human level, it feels like a very personal and private thing to show. Much more so than his naked body- I mean, this is his brain. But it is also beautiful. This is our little boy's mind. While you can certainly see dark areas, much of his brain is illuminated. In the future we can hope to see some significant reduction in these shaded areas.
Cash is tentatively scheduled for another spinal injection in the next few days. This will be my first experience with it and I understand from Stephanie that it is quite tedious. I will let you know when the date is set.
If, like me, you were intrigued by the SPECT scan results seen in the last post then I would like to share with you the scan of Cash's own brain.
This was taken when we arrived here in December, before any treatments were administered. In cold, clinical terms you are looking at "sever hypoperfusion in bilateral frontal cortices, moderate to severe hypoperfusion in the bilateral temporal and cerebellar regions, mild hypoperfusion in right occipital cortex."
At the human level, it feels like a very personal and private thing to show. Much more so than his naked body- I mean, this is his brain. But it is also beautiful. This is our little boy's mind. While you can certainly see dark areas, much of his brain is illuminated. In the future we can hope to see some significant reduction in these shaded areas.
Cash is tentatively scheduled for another spinal injection in the next few days. This will be my first experience with it and I understand from Stephanie that it is quite tedious. I will let you know when the date is set.
It's all in your head
A notice on the wall in the lobby informed us that all doctors, staff, and patients were to meet today at 11:30. It had been up for a week and Dianne and I were puzzling about what this might be about. It turned out to be the most fascinating and informative interaction we have had yet.
First the patients were each asked to share about themselves. I will talk more about our group later. Then Dr. Schroff (nearest) and Dr. Ashish (center) spoke a bit and the floor was opened to questions. So much information came out of this discussion that I will gratefully have material for several upcoming blogs.
Being one hungry for empirical data rather than anecdotal evidence, I found Dr. Schroff's brain SPECT (Single Photon Emission Computed Tomography- a nuclear imaging test that shows how blood flows in organs and tissues) scans of an 11-year-old boy with Cerebral Palsy to be the most compelling. As you can see in the 'before' picture, there are large dark patches which indicate damaged areas of his brain. In the 'after' scan you can clearly see that the dark areas have decreased dramatically in size. Continued improvements in these scans were seen several months after the initial treatment period.
This rekindled my hopes of improvements for Cash. As I confided in Dianne earlier, I do not see a marked change in him since my return. I see improvements and advancement but nothing that suggests a leap from the slow but steady progress we have seen in him to date. It is not that I doubt the stem cells can work, rather I don't believe we have quite reached the tipping point where changes become definitively apparent. Every day he gets hundreds of thousands of new cells injected into his body and any one of them could tip the balance.
First the patients were each asked to share about themselves. I will talk more about our group later. Then Dr. Schroff (nearest) and Dr. Ashish (center) spoke a bit and the floor was opened to questions. So much information came out of this discussion that I will gratefully have material for several upcoming blogs. 
Being one hungry for empirical data rather than anecdotal evidence, I found Dr. Schroff's brain SPECT (Single Photon Emission Computed Tomography- a nuclear imaging test that shows how blood flows in organs and tissues) scans of an 11-year-old boy with Cerebral Palsy to be the most compelling. As you can see in the 'before' picture, there are large dark patches which indicate damaged areas of his brain. In the 'after' scan you can clearly see that the dark areas have decreased dramatically in size. Continued improvements in these scans were seen several months after the initial treatment period.
This rekindled my hopes of improvements for Cash. As I confided in Dianne earlier, I do not see a marked change in him since my return. I see improvements and advancement but nothing that suggests a leap from the slow but steady progress we have seen in him to date. It is not that I doubt the stem cells can work, rather I don't believe we have quite reached the tipping point where changes become definitively apparent. Every day he gets hundreds of thousands of new cells injected into his body and any one of them could tip the balance.
Tuesday, January 25, 2011
750 ml to freedom
Miscreants that we are, Dianne and I have conspired to bring beer into our room. Clinic policy forbids alcohol and smoking but, hey, we're rebels. Feels like sneaking beverage into the college dorm. I surreptitiously bring the contraband in double bagged and the next day empties are smuggled back out to cover our tracks. Naturally we drink Kingfisher beer, the national brew of choice.
Donnish, Cash's usual physical therapist, is on holiday so he has had a different person each of the last couple of days. We think Cash hoodwinkes rookies when he can actually do a lot more than he lets on.
Tomorrow is Republic Day- the national holiday equivalent to our 4th of July. Cash gets a shot but no therapy. Dianne and I are pondering what we should do with ourselves for the day.
Monday, January 24, 2011
Can I get a helpwithwhat?
Since returning to the clinic I have been hesitant to try to identify changes in Cash right away. I want to keep an open mind and be observant but not draw conclusions. Dianne seems convinced that she sees improvements and she has certainly spent a great deal of time with him throughout his life. Still I try to reserve judgement.
I did, however, see a very nice bit of adaptive behavior today. Usually when Cash is in his walker he cruises straight into the open elevator but relies on me to turn his walker around so he can exit. Today for the first time I saw him manage a three point turn to head his walker facing the exit. I was impressed by his problem solving and awareness of how the elevator works.
One learned behavior that concerns me is that Cash has come to believe that the name for his music player is 'help' in sign language. And since we always ask, "Help with what?" I think 'withwhat' is its last name in his mind. While it is cute, we want him to know that the concept of asking for assistance can be applied to other things as well. Dianne looked up the sign for radio (index finger over pointer finger as the letter R then moved toward and away from the ear) and we are determined to make him use some approximation of this sign to get his radio (or 'blue music' as we call it). We'll see how it goes.
Sunday, January 23, 2011
Ears lowered
Stephanie left yesterday morning and I got back to Delhi yesterday night. Cash gave me his coy little smile when I came in and all was well.
Today is Sunday so no therapy. After his morning shot Cash and I went out to get diapers and a haircut. It was his first professional hair cut- I have always done it at home. He hates haircuts and behaves like a cat getting a bath. He looks better but Dianne confirmed that this haircut is not as good as the ones I give him.
Thursday, January 20, 2011
Deep breaths
Went to Janpath Market today and finished buying gifts to take home. This market was busy and crowded and pushier than the other markets I've been to.
Have I mentioned that Cash's breathing is better? It makes sense, since we are at a lower altitude. But there is a lot of pollution here and it doesn't seem to be bothering him. It is a tremendous pleasure not to worry about his breathing - maybe the first time in his whole life it hasn't been a concern. And he has not gotten sick since his initial bout of pneumonia, despite being exposed to a whole new country of germs.
AD thinks I should mention Hasha, Cash's OT. She is super super nice. She calls Cash "baby", as in "come to me, baby". She and Cash work on coloring and stacking and messing about with his mouth (like using honey on his lips to try to make him lick it off and thus practice small movements of his tongue). Cash likes to play with her. We are a little conflicted about whether to continue to pursue his sign language or whether to make a push for verbal language. They want us to concentrate on the verbal, and while I agree with them, it is hard not to use what we know, especially when he still doesn't act very interested in talking.
Have I mentioned that Cash's breathing is better? It makes sense, since we are at a lower altitude. But there is a lot of pollution here and it doesn't seem to be bothering him. It is a tremendous pleasure not to worry about his breathing - maybe the first time in his whole life it hasn't been a concern. And he has not gotten sick since his initial bout of pneumonia, despite being exposed to a whole new country of germs.
AD thinks I should mention Hasha, Cash's OT. She is super super nice. She calls Cash "baby", as in "come to me, baby". She and Cash work on coloring and stacking and messing about with his mouth (like using honey on his lips to try to make him lick it off and thus practice small movements of his tongue). Cash likes to play with her. We are a little conflicted about whether to continue to pursue his sign language or whether to make a push for verbal language. They want us to concentrate on the verbal, and while I agree with them, it is hard not to use what we know, especially when he still doesn't act very interested in talking.
No peas, please
Cash is attempting to become a picky eater. For the last two days, he has snubbed his healthy proteins and veggies (esp the veggies) in favor of trying to get bread or chips. Today at lunch he shut his mouth like a little clam whenever I came near him with peas, and then he signed "cookie", which was unexpected because he has rarely used that sign - but he clearly knew what it meant.
A confession: I have let his gluten-free diet lapse. It was just a little too challenging to do here, given the other dietary restrictions and the clinic's set menus. And now apparently Cash is on to the game and is seizing his chance to eat nothing but gluten.
In other news, he is really standing MUCH longer now. I took a video last week and then one today, and there is a difference. Of course the leg braces help.
AD is happily adjusting to India. Here is an email exchange between Heather and I:
> From: Heathers
> Sent: Wednesday, January 19, 2011 6:05 AM
> To: Stephanie Krolick
> Subject: Re: bye!
> Have a good dinner! Is my mom settling in well?
On Jan 19, 2011, at 10:00 AM, Stephanie Krolick <skrolick@aspenmusic.org> wrote:
> She is! She is much more resilient and adventurous than she pretends to be.
> From: Heathers
> Sent: Wednesday, January 20, 2011 7:17 AM
> To: Stephanie Krolick
> Subject: Re: bye!
>She was very stressed that everyone thought she would be freaked out, so I'm guessing she is displaying her Superwoman side to prove us all wrong.
I read this exchange to Aunt Dianne and she was amused - she says she does not know why we would doubt her ability to do anything at all, let alone hang out in India.
A confession: I have let his gluten-free diet lapse. It was just a little too challenging to do here, given the other dietary restrictions and the clinic's set menus. And now apparently Cash is on to the game and is seizing his chance to eat nothing but gluten.
In other news, he is really standing MUCH longer now. I took a video last week and then one today, and there is a difference. Of course the leg braces help.
AD is happily adjusting to India. Here is an email exchange between Heather and I:
> From: Heathers
> Sent: Wednesday, January 19, 2011 6:05 AM
> To: Stephanie Krolick
> Subject: Re: bye!
> Have a good dinner! Is my mom settling in well?
On Jan 19, 2011, at 10:00 AM, Stephanie Krolick <skrolick@aspenmusic.org> wrote:
> She is! She is much more resilient and adventurous than she pretends to be.
> From: Heathers
> Sent: Wednesday, January 20, 2011 7:17 AM
> To: Stephanie Krolick
> Subject: Re: bye!
>She was very stressed that everyone thought she would be freaked out, so I'm guessing she is displaying her Superwoman side to prove us all wrong.
I read this exchange to Aunt Dianne and she was amused - she says she does not know why we would doubt her ability to do anything at all, let alone hang out in India.
Wednesday, January 19, 2011
Thoughts on leaving
I leave in three days. I am freaking out.
I really like it here. I like India, I like the clinic. But I'm not sure being here for a long time is good for my mental health. I can't help but watch for signs of progress all the time and it can take a toll. For instance: Cash stands for 45 seconds - Yay! It's working! And then: Cash has jello legs and won't meet our eyes - Ugh, this is so discouraging and a waste of time. Next: Cash's PT tells another therapist he has Down's - WTF?! Then: Cash clearly responds to what we are saying - It's all worth it. I try to stay calm and not overreact to any one event, but the cumulative effect is somewhat wearing.
Plus I have eaten my body weight in chocolate and not had any exercise in a month.
So now I leave, and Josh and AD take over for the next month. I remain hopeful that more progress will be made. But I won't get to see it every day....
I really like it here. I like India, I like the clinic. But I'm not sure being here for a long time is good for my mental health. I can't help but watch for signs of progress all the time and it can take a toll. For instance: Cash stands for 45 seconds - Yay! It's working! And then: Cash has jello legs and won't meet our eyes - Ugh, this is so discouraging and a waste of time. Next: Cash's PT tells another therapist he has Down's - WTF?! Then: Cash clearly responds to what we are saying - It's all worth it. I try to stay calm and not overreact to any one event, but the cumulative effect is somewhat wearing.
Plus I have eaten my body weight in chocolate and not had any exercise in a month.
So now I leave, and Josh and AD take over for the next month. I remain hopeful that more progress will be made. But I won't get to see it every day....
Tuesday, January 18, 2011
Lentils for lunch, today and every day
Aunt Dianne is here. She is doing well and seems to be taking the change in culture in stride. She is gratifyingly impressed by the crazy traffic and gratifyingly chill about everything else.
I am leaving in 4 days. I do not want to go. I want to stay with Cash, I want to stay at the clinic, I want to stay in India. I will be getting on a plane on Saturday anyway.
Cash is doing great - more and longer standing all the time. He is sleeping alot right now, but the other patients tell me that stem cells make them tired. He pushed himself up into a standing position the other day using only a low cushion, and today he stood alone for a long time without his braces. I still love to see him stand.
I'm reading The Selected Works of T.S. Spivet right now. I highly recommend it.
I am leaving in 4 days. I do not want to go. I want to stay with Cash, I want to stay at the clinic, I want to stay in India. I will be getting on a plane on Saturday anyway.
Cash is doing great - more and longer standing all the time. He is sleeping alot right now, but the other patients tell me that stem cells make them tired. He pushed himself up into a standing position the other day using only a low cushion, and today he stood alone for a long time without his braces. I still love to see him stand.
I'm reading The Selected Works of T.S. Spivet right now. I highly recommend it.
Monday, January 17, 2011
Picture this
Our day in pictures:
We wake up, eat breakfast, and get dressed while watching The Simpsons.
We check what happened in the good ole US of A while we were asleep. We read all of your emails and Facebook updates (like: Alex was born, Lenor made butter chicken, Lisa went to a special course on therapy for kids, Jenny got stuck writing the Exec minutes instead of me....)
Cash gets a shot of stem cells in the morning. Usually that's in our room, and no big deal, but today's was downstairs and Cash did not like it.
Then Cash has special needs therapy with Dr. Rahoul. Cash is now moving the mouse to color onscreen images.
Next, Cash has Physio with Donish. Per Donish, Cash's trunk strength is improving. Frog is an important part of Physio, as are chips. We are not above bribery.
After Physio, sometimes we take a quick walk out to the market. Usually, though, we hang out at the clinic, eat lunch, and watch the ward boys clean our room. Then it's time for OT with Hasha. Cash has started to use a crayon to color (I should ask Elizabeth if he was he doing that much before).
Then another session of Physio, by which time it is 3:00pm. Sometimes we spend the rest of the afternoon in the room, napping or computer-ing. Sometimes we go on small expeditions, like to the mall. Today we went on a walk to the Deer Park, where we saw this sign, and then I tried to go to yoga, but Cash started angry hopping around the room, so no yoga for me.
Dinner at 6:30, then we look for people with kitties to talk to on Skype, then bed.
We wake up, eat breakfast, and get dressed while watching The Simpsons.
Cash gets a shot of stem cells in the morning. Usually that's in our room, and no big deal, but today's was downstairs and Cash did not like it.
Sunday, January 16, 2011
Sensible
Mom is gone, AD is on her way. Cash is doing well - this weekend he pushed himself to standing from a sitting position on the floor using only a low cushion. He is also doing a little coloring and scooting a computer mouse around. He has become a connoisseur of spicy food.
We also went to the Garden of the Five Senses this weekend. Here is a photo montage of sound, sight, taste, smell, and touch.
We also went to the Garden of the Five Senses this weekend. Here is a photo montage of sound, sight, taste, smell, and touch.
Friday, January 14, 2011
Markets and Muslims
Today we went to the Old Delhi area. We took a bicycle rickshaw and rode by the Jama Masjid (Friday Mosque) just as prayer was letting out - a zillion Muslim men all around us, it was wild. Also a zillion armed Indian policemen (remember this is a predominantly Hindu country). We also rode through the Chandni Chowk marketplace - little winding streets and alleys with stall after stall of merchandise. Beautiful and crowded and vibrant and nutty. This was the first time I really got a sense of a city with 22 million people. I have a new appreciation for our nice little neighborhood, yay Green Park.
We also took the metro - it was immaculately clean and orderly. We sat in the "women's car" - very civilized.
And I bought some gifts for people. I am a terrible bargainer.
We also took the metro - it was immaculately clean and orderly. We sat in the "women's car" - very civilized.
And I bought some gifts for people. I am a terrible bargainer.
Thursday, January 13, 2011
Lohri Festival
The clinic celebrated some festival that we didn't completely understand tonight with a bonfire on the sidewalk out front (seriously, a big fire right on the sidewalk). Apparently the festival was "the last bonfire of winter". Because now it is going to get warm. Ha! We participated by throwing popcorn and peanuts into the fire and also eating them. It was all very amusing.
We also went to the pretty Lodi Gardens today. Mom got her fortune told - badly. And Mom has accidentally deleted all the pictures on her camera for the second time in a week.
I'm thinking I haven't really described Cash's stem cell treatment. He gets daily injections - it is usually just a quick intra-muscular shot given by his nurses in our room. Sometimes he gets a second shot in the evening, and if so, that one is usually directly into a vein. Also sometimes he gets a shot in his neck or lower back, and those are usually done in the injection room downstairs. Plus Cash has had one procedure where the stem cells were injected directly into his spinal cord - that took more time and we had to keep him flat for 4 hours afterward. I think there may be other special procedures, but that's all for us so far.
We also went to the pretty Lodi Gardens today. Mom got her fortune told - badly. And Mom has accidentally deleted all the pictures on her camera for the second time in a week.
I'm thinking I haven't really described Cash's stem cell treatment. He gets daily injections - it is usually just a quick intra-muscular shot given by his nurses in our room. Sometimes he gets a second shot in the evening, and if so, that one is usually directly into a vein. Also sometimes he gets a shot in his neck or lower back, and those are usually done in the injection room downstairs. Plus Cash has had one procedure where the stem cells were injected directly into his spinal cord - that took more time and we had to keep him flat for 4 hours afterward. I think there may be other special procedures, but that's all for us so far.
Wednesday, January 12, 2011
Pay the grumpiness forward
Cash spent 2-3 hours last night being grumpy - on and off crying and pitching a fit until 1am.
Today I am tired and grumpy.
Today I am tired and grumpy.
Sparky
Well, Cash was excellent today. To be honest, I had been feeling a tiny bit down, not seeing much progress, even though I know realistically that any progress is likely to be small and take awhile. But while nothing today screamed "stem cells!", he did do a bunch of very nice things, including stand on his own for a long time (without braces, remember) and use a marker to color. Plus he was personable and engaged. It feels good.
There's a video posted to Facebook of him standing. I still can't get videos to load on this site.
Miscellaneous: We took a walk to Deer Park after therapies; the food at the clinic is getting a little old - lentils, lentils, lentils; the weather is warming up, though Dr. Geeta told Mom to dress more warmly; Cash visited Dr. G in her office today - she was having a meeting, but her door was open, so Cash ambled in with his walker and admired her artwork; new patients have arrived at the clinic - I'll miss Lucas, Demila, and Cindy; I am eating a frightening amount of chocolate; Mom and I are keeping up on the latest Bollywood gossip (it's all about Shah Rukh Khan, you heard it here first); we like all the staff except the meanie front desk girls; and, I really like India. It's a fascinating place.
There's a video posted to Facebook of him standing. I still can't get videos to load on this site.
Miscellaneous: We took a walk to Deer Park after therapies; the food at the clinic is getting a little old - lentils, lentils, lentils; the weather is warming up, though Dr. Geeta told Mom to dress more warmly; Cash visited Dr. G in her office today - she was having a meeting, but her door was open, so Cash ambled in with his walker and admired her artwork; new patients have arrived at the clinic - I'll miss Lucas, Demila, and Cindy; I am eating a frightening amount of chocolate; Mom and I are keeping up on the latest Bollywood gossip (it's all about Shah Rukh Khan, you heard it here first); we like all the staff except the meanie front desk girls; and, I really like India. It's a fascinating place.
Monday, January 10, 2011
The Taj
Mom and I went to Agra this weekend to see the Taj Mahal. Cash stayed at the clinic with his babysitter Nora - the drive was about 5 hours each way and I didn't want to subject him to that. He had a great time and was cheerful when we got home. (As a side note, the taxis in Delhi don't generally have seatbelts - it is amazing how quickly we adjusted to letting Cash ride around without one. In America of course, we are all horrified if kid goes 10 feet without a car seat, let alone a seatbelt.)
It was illuminating to get outside of Delhi. We went through countryside and small towns on the drive - we saw traffic jams, fields of wheat, statues of deities, garbage, colleges, women carrying huge bundles on their heads, animals of all kinds, temples, markets....it was fascinating. I got very excited about seeing my first sacred cow, and then we saw a zillion more. Apparently they rounded up most of the cows in Delhi a few years ago (you can buy milk in cartons), but there are still many outside the city.
The Taj itself was beautiful though the day was foggy. There were a ton of tourists, but it was still moving.
Cash was busy exerting his will today: no I will not take a bath, no I will not play on the computer, no I will not walk, no I will not do Physio, no I will not stick out my tongue, help me with music right now, help me with Frog right now, bring me a chip right now. Is he always like this?!
It was illuminating to get outside of Delhi. We went through countryside and small towns on the drive - we saw traffic jams, fields of wheat, statues of deities, garbage, colleges, women carrying huge bundles on their heads, animals of all kinds, temples, markets....it was fascinating. I got very excited about seeing my first sacred cow, and then we saw a zillion more. Apparently they rounded up most of the cows in Delhi a few years ago (you can buy milk in cartons), but there are still many outside the city.
The Taj itself was beautiful though the day was foggy. There were a ton of tourists, but it was still moving.
Cash was busy exerting his will today: no I will not take a bath, no I will not play on the computer, no I will not walk, no I will not do Physio, no I will not stick out my tongue, help me with music right now, help me with Frog right now, bring me a chip right now. Is he always like this?!
Firsts
This entry is rated PG-13 for brief nudity :-)
Saturday was day of firsts for me in India:
Saw first elephant (strolling down the road on his way to bring good luck to a party)
Saw first camel (then saw many more)
Saw first Indian sacred cow (then saw many many more, both tethered and loose)
Saw first water buffalo (in critical ways NOT a cow, and thus okay to eat if you are Hindu; also found out that Mom and Josh have been drinking water buffalo milk with their cereal and coffee the whole time they have been here)
Got first "front rub" as part of a massage at a spa (yes, that means a little Asian woman with her hands on my boobs; it was not in the written description and I was quite surprised)
Got my eyebrows "threaded" (like waxing, but better)
Ate dim sum for the first time ever (yummy)
An awesome day, obviously.
Saturday was day of firsts for me in India:
Saw first elephant (strolling down the road on his way to bring good luck to a party)
Saw first camel (then saw many more)
Saw first Indian sacred cow (then saw many many more, both tethered and loose)
Saw first water buffalo (in critical ways NOT a cow, and thus okay to eat if you are Hindu; also found out that Mom and Josh have been drinking water buffalo milk with their cereal and coffee the whole time they have been here)
Got first "front rub" as part of a massage at a spa (yes, that means a little Asian woman with her hands on my boobs; it was not in the written description and I was quite surprised)
Got my eyebrows "threaded" (like waxing, but better)
Ate dim sum for the first time ever (yummy)
An awesome day, obviously.
Friday, January 7, 2011
Friday
Cash finally seems to be settling in and acting himself. Typically for Cash, when we first got here, he didn't get upset or act out, but in retrospect, I can tell he withdrew. Now he's using his legs again and signing more. It's very nice to see.
We Skype fairly regularly, often with Aunt Heather and Grampa, both of whom have cats (the darling Clementine and the charismatic Dobby). Cash loves to Skype and will hop across the room when he hears the special Skype ring, but he does seem to strongly associate Skype with kitties. Yesterday we were talking to Josh, and Cash said "kitty" - apparently he thinks if you are on Skype, you probably have a cat.
I tried to put up a video of Cash signing "kitty" but it won't go - check out the Change for Cash facebook page to see that cute kid make whiskers.
We went to the Dilli Haat market today. It was fun, with lots of crafts and scarves. And, ha! I found the saffron Lenor asked for - if anyone else has shopping requests, just let me know!
Gramma seems to have a touch of Delhi belly. Cash and I do not - we are eating like small piggies. In fact, I put on my jeans today for the first time in a week and was dismayed to find they barely button. I am going to go get some chocolate and put those jeans away.
We Skype fairly regularly, often with Aunt Heather and Grampa, both of whom have cats (the darling Clementine and the charismatic Dobby). Cash loves to Skype and will hop across the room when he hears the special Skype ring, but he does seem to strongly associate Skype with kitties. Yesterday we were talking to Josh, and Cash said "kitty" - apparently he thinks if you are on Skype, you probably have a cat.
I tried to put up a video of Cash signing "kitty" but it won't go - check out the Change for Cash facebook page to see that cute kid make whiskers.
We went to the Dilli Haat market today. It was fun, with lots of crafts and scarves. And, ha! I found the saffron Lenor asked for - if anyone else has shopping requests, just let me know!
Gramma seems to have a touch of Delhi belly. Cash and I do not - we are eating like small piggies. In fact, I put on my jeans today for the first time in a week and was dismayed to find they barely button. I am going to go get some chocolate and put those jeans away.
Wednesday, January 5, 2011
Look here
Dr. Geeta says she sees improved eye contact and coordination. I agree, though the change is slight to my eyes. But we've only had approximately nine days of treatment. It is hard not to constantly look for change, even though that isn't really how this works.
I've been a little frustrated because Cash doesn't seem to want to do Physio. He is floppy and grumpy. He can be remarkably stubborn.
Everyone is hounding me about getting out more. I'm fine - I like our little clinic. We did go to the mall yesterday and I bought some more kurtis (tunics) and leggings - I'm beginning to look Indian. We also plan to do the Taj this weekend.
Talked to Josh this morning by Skype. He seems to be enjoying his travels. I'm proud of us for working together to help Cash, it hasn't always been easy. We both want what's best for Cash, but spending time together can be stressful for us. I give us both credit for trying hard.
I've been a little frustrated because Cash doesn't seem to want to do Physio. He is floppy and grumpy. He can be remarkably stubborn.
Everyone is hounding me about getting out more. I'm fine - I like our little clinic. We did go to the mall yesterday and I bought some more kurtis (tunics) and leggings - I'm beginning to look Indian. We also plan to do the Taj this weekend.
Talked to Josh this morning by Skype. He seems to be enjoying his travels. I'm proud of us for working together to help Cash, it hasn't always been easy. We both want what's best for Cash, but spending time together can be stressful for us. I give us both credit for trying hard.
This is spinal tap
Yesterday Cash had a spinal injection. They put Cash in a very nice hospital gown, and then we went upstairs to the "operating room" where two men took Cash from me. He came back in about 15 minutes - so you would think the tough part was over, right? But Mom and I then had to keep Cash lying flat on his back (in a slightly inverted position) for four hours. Note that he was not sedated, and he was not numb. He was fussy at first, but then he settled down. We read, we sang, we watched TV, we napped. We even had a lying down lunch.
I have pictures but they won't upload right now. I'll try again later -
I have pictures but they won't upload right now. I'll try again later -
Monday, January 3, 2011
Pilgrimage
As Stephanie mentioned, I am taking a break to travel around the state of Rajasthan while her mother is visiting. The purpose is to make room for Trisha as well as provide a break for me. I will be with Cash and Dianne for another month following Stephanie's departure (and, hopefully, an additional month in June if a second round of treatments is possible). Needless to say, it does not take long to get stir crazy in the confines of the clinic and our 10' x 12' quarters.
The past two days I have been in the holy city of Pushkar. Today I dropped a rose bud into the sacred lake and offered a prayer for Cash. The lake is an important religious destination for pilgrims. Some of Gandhi's ashes were even spread upon the waters of one of the 52 bathing ghats. Whatever god or gods reside here, I pray they will watch over our son.
The past two days I have been in the holy city of Pushkar. Today I dropped a rose bud into the sacred lake and offered a prayer for Cash. The lake is an important religious destination for pilgrims. Some of Gandhi's ashes were even spread upon the waters of one of the 52 bathing ghats. Whatever god or gods reside here, I pray they will watch over our son.
Yoga and butter
Mmm, we just got back from dinner at the hotel next door - butter chicken, mixed veggies, homemade french fries, and naan fresh from the tandoor. Mom got to go into the kitchen and see the tandoor oven - she clapped her hands with glee.
Butter chicken is maybe the best food ever. Murg makhani for those of you who speak Hindi.
We also did yoga today. Mom had trouble telling her left from her right. Luckily that did not prevent her from doing the cobra. Cash did the baby sleep pose - literally.
Here is the restaurant where we had dinner:
Yesterday we went to the mall where I bought two adorable Indian-style tunics - very good to wear after I've eaten too much butter chicken. Here is Cash all ready to go on the outing, and here is Mom at a store with her name.
Butter chicken is maybe the best food ever. Murg makhani for those of you who speak Hindi.
We also did yoga today. Mom had trouble telling her left from her right. Luckily that did not prevent her from doing the cobra. Cash did the baby sleep pose - literally.
Here is the restaurant where we had dinner:
Yesterday we went to the mall where I bought two adorable Indian-style tunics - very good to wear after I've eaten too much butter chicken. Here is Cash all ready to go on the outing, and here is Mom at a store with her name.
Our day
Today Cash got a shot in his neck (not in his spinal cord, but in the muscles). Tomorrow he is getting an injection into the base of his spinal cord, and then afterward he has to lie still for four hours. Can you imagine getting a five year old to lie still for four hours?! I'm not sure how we are going to manage it.
Special procedures are actually pretty frequent, but here's what a "regular" day looks like: Wake up around 8:00am, breakfast is delivered to our room at 8:30am. Cash always has an egg of some kind. We feed Cash, put away the beds, get dressed, and go Special Needs therapy with Dr. Rahool at 10:00am. Cash plays on the computer for about 45 minutes, while one of us gives Dr. Rahool the positive reinforcement he seems to need. The other person might chill out in the room or go walk around the neighborhood - we try to take turns being with Cash during therapies. Then Cash has Physio at 10:45am with Donish - Cash gets a little massage, he sits on an exercise ball, he walks on the stairs, he practices climbing. He is done with Physio at 11:30 and we return to the room. Sometimes we go for a walk then, but often we hang out at home because there are miscellaneous things to do, like get an injection or have the room cleaned. Having the room cleaned involves the ward boys sweeping, dusting, mopping, and emptying the trash. They also refill our basic food supplies if needed (the clinic provides milk, bread, butter, jam, cereal, tea, coffee, and cookies in the little kitchen area in our room). Lunch is served at 12:30 (today was some excellent chana dal), and then Cash has OT for 30 minutes with Dr. Eddy at 1:30pm. He finishes up therapies with a second session of Physio at 2:30pm, by which time he is grumpy and has to be bribed to do anything. At 3:00pm we go back to the room and the rest of the day is semi-free. I say semi because there's usually something to do and it gets dark early. Typical afternoon activities include napping, blogging, and yoga at 4:30pm on Mondays Wednesdays and Fridays. Dinner is served at 6:30pm, and then we usually watch TV and Skype in the evenings. Cash sometimes gets another injection. It is all pretty slow-paced yet structured. It does not leave a lot of time for exploring Delhi, but that is not what we are here for.
Weekends are free, so that is when we take a taxi and brave the wild traffic to see the city. Mom and I are hoping to visit the Taj Mahal this weekend.
Special procedures are actually pretty frequent, but here's what a "regular" day looks like: Wake up around 8:00am, breakfast is delivered to our room at 8:30am. Cash always has an egg of some kind. We feed Cash, put away the beds, get dressed, and go Special Needs therapy with Dr. Rahool at 10:00am. Cash plays on the computer for about 45 minutes, while one of us gives Dr. Rahool the positive reinforcement he seems to need. The other person might chill out in the room or go walk around the neighborhood - we try to take turns being with Cash during therapies. Then Cash has Physio at 10:45am with Donish - Cash gets a little massage, he sits on an exercise ball, he walks on the stairs, he practices climbing. He is done with Physio at 11:30 and we return to the room. Sometimes we go for a walk then, but often we hang out at home because there are miscellaneous things to do, like get an injection or have the room cleaned. Having the room cleaned involves the ward boys sweeping, dusting, mopping, and emptying the trash. They also refill our basic food supplies if needed (the clinic provides milk, bread, butter, jam, cereal, tea, coffee, and cookies in the little kitchen area in our room). Lunch is served at 12:30 (today was some excellent chana dal), and then Cash has OT for 30 minutes with Dr. Eddy at 1:30pm. He finishes up therapies with a second session of Physio at 2:30pm, by which time he is grumpy and has to be bribed to do anything. At 3:00pm we go back to the room and the rest of the day is semi-free. I say semi because there's usually something to do and it gets dark early. Typical afternoon activities include napping, blogging, and yoga at 4:30pm on Mondays Wednesdays and Fridays. Dinner is served at 6:30pm, and then we usually watch TV and Skype in the evenings. Cash sometimes gets another injection. It is all pretty slow-paced yet structured. It does not leave a lot of time for exploring Delhi, but that is not what we are here for.
Weekends are free, so that is when we take a taxi and brave the wild traffic to see the city. Mom and I are hoping to visit the Taj Mahal this weekend.
Saturday, January 1, 2011
Mamy Poko Pants
Josh has left Delhi for a tour of India, and my mom has arrived to stay with Cash and I. She made it here safely, and with a whole new suitcase full of clothes and toys for Cash.
Here is a picture of the diapers we are using here. Japan's #1! Notice that Frog is thrilled to find quality diapers in Delhi.
Here is a picture of the diapers we are using here. Japan's #1! Notice that Frog is thrilled to find quality diapers in Delhi.
Yay 2011
Last night, Josh and I went out for New Year's Eve. We ended up at a club at a mall - there was food and drink, tobacco hookahs, girls dancing on the bar, lots of drunk Indians wishing us happy new year. We ate chicken tikka, practiced our Bollywood moves on the dance floor, and had an exciting escape from a guy who was trying to get too friendly with me. It was great fun.
Cash had a nice evening at home with Nora, his babysitter, and Frog. Nora is a treasure - 12 hours for $20 and excellent English.
Josh left this morning to travel around, and Mom arrives tonight at 1:00am. Cash and I have spent all day snacking and chilling.
Cash had a nice evening at home with Nora, his babysitter, and Frog. Nora is a treasure - 12 hours for $20 and excellent English.
Josh left this morning to travel around, and Mom arrives tonight at 1:00am. Cash and I have spent all day snacking and chilling.
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