Blood and guts

We are packed and ready to depart first thing tomorrow morning. Everyone agrees Cash is looking good and seems to have made progress. He is sitting here beside me right now, and boy does he look cute. He is bouncing around in an excited manner. And now he is leaning on me and playing Cee Lo on his iPad.

Cash had a bloody nose all day today. We think he poked at it. (It is one of his new things this fall - sticking his finger up his nose. Also his hand down his pants. Both are things that we have to knock out of his repetoire.) Anyhoo, his nose bled off and on all day and often he looked like he had some sort of gruesome hemorrhagic fever. Let's hope it clears up before we board an airplane and cause an international communcative disease scare.

I went over Cash's brain spect scan with Dr. G today. She says it looks good and we need to focus on teaching him because he is ready to learn.

As always, it is hard to leave our friends at the hospital, both staff and patients. The patients this time were particularly remarkable - Lucas and his family, Colleen, Mary, Amanda, Mrs. Gandhi and Sheel, Santush and his son, Vunch and his parents, Ryan and his parents, and Moodie and her family from Kuwait. Moodie's granddaughter Jenan was a great friend to Cash. All these people are amazing in their strength and their efforts to improve their situations - they have added immeasurably to our lives and we hope for the best for them. It takes courage to do this stem cell thing and to let yourself believe a change can happen - I hope it does for each of them.

What do you think?

Sort of amazing really....

I just looked over at Cash and he had a funny look on his face. I asked if there was something he wanted to tell me and he signed "poo". And indeed, he had a dirty diaper. That's the second time in the last two days he has done that. It is huge - a first step towards potty training.

Also, last night we were playing on his iPad and messing with his communciation apps. He used the app to ask for a drink and a cookie. And then he did it again. Multiple times.

Also, he attempted the signs for "cow" and "balloon". Sometimes we wait weeks, months in between new signs....

Cash is done with his therapies here. We are just hanging out for a few days (only one more day at this point), which is frustrating. I want stem cells every moment we are here!

Kiddos

There are alot of kids here at the clinic this year. I feel a painful kinship with all of their parents - these are people from all over the world who are just hoping to find something that will make a difference in their children's lives. I see the struggle, the sadness in their faces, and I wonder if my face looks the same. I think it usually doesn't, but it probably does sometimes. I see their pain, and I want to make it better. I want to make their children better, I want to take away the pain. Of course, I can't even take away my own pain, I can only work to focus on the good. For some of the parents, those with the most disabled kids, I can see that they would be so happy to have even the progress we have had with Cash. It reminds me that sometimes I am envious of people with "smaller" disabilities than our own. But today I am grateful for all that Cash is and all he can do.

Plant a Tree This Monsoon

"Plant a Tree This Monsoon" is a slogan around New Delhi right now. We are not in monsoon season, but I like it. I like it because it feels like we have been planting a few seeds ourselves lately and are waiting to see how they grow.

First of all, of course, is Cash. He is looking great - very responsive, engaged - but we will see how these stem cell seeds grow once we are home. I have seen some encouraging signs, including some interest in saying "potty", good walking, better interaction with people (lots of shaking hands and saying hi and goodbye), more temper tantrums, and better manipulation of his iPad. I love his little squishable self and am proud of all the work he is doing. He is a constant surprise, a constant journey.

And secondly, we have had the big change in my career. I'm halfway through pacer school and already interviewing for jobs. It's an incredible change and I feel enormously excited about it - excited about both working with pacemakers and the change in location that will come with getting a job. Today I traveled by taxi halfway across the city to a government hospital (free for anyone, thus long queues and hordes of people) to view some pacemaker procedures. I didn't get to see any pacers, but I did get to see ----- open heart surgery!! It was amazing, amazing, amazing. I saw 2 mitral valve replacements and one Fontaine procedure. I got to see a chest opened and a heart stopped, catherization, a stent implanted, and defibrillation to get a heart started again. I learned a ton, and I feel very intrepid :-)

So. go ahead - be bold - plant a tree this monsoon. Who knows how it might bloom -

Christmas in India

Merry Christmas! We have had a lovely day. We went on a little mini-break and spent last night in a local hotel (where they had hot water). It was really very nice - everyone was super kind and it felt very festive. It is strange to say, but I felt more Christmas spirit today than I have in many years. I am not sure why. Maybe it was because the atmosphere seemed celebratory in the nicest possible way and everyone went out of their way to make us feel special. It was a truly wonderful, exceptional day filled with love and peace.

And Cash got an injection of stem cells just now - best Christmas present of all.

Gifted

Well, it's Christmas Eve back home. Not so much here. The clinic does have a Christmas tree and Mom has put some decorations up in our room, but doesn't really feel like Christmas. Which is fine, just a little weird. Plus for Cash and I, this is our second Christmas in a row in India. It is not a huge deal, but I do miss our family. We may try to go do something a little special today.

Cash is doing all kinds of nice new things on his iPad (speaking of Christmas presents).

What we do all day

Thursday was a semi-typical day at the clinic. Here is a description, with illustrations.

We woke up and had breakfast. Cash had an egg. Then we checked our email to see what happened in the States overnight.

Cash then got an injection of stem cells.

Then we headed downstairs for Occupational Therapy with Bhawna and Physical Therapy with Donesh.

After PT, it was 10:30am and we had a break until Cash's afternoon PT session at 2:15. We do different things different days but this day we went to visit our local market and bought chips and barfi candy. Then we went for a stroll through Deer Park. Cash usually rides in his stroller for these trips (the traffic is insane) but I made him get out and walk down the market for the picture. He was exceedingly grumpy about it though you can't tell. I had to take a million pictures to find one where he wasn't whining.

After 3:00pm, we were done with therapies for the day. Sometimes we just hang out locally, sometimes we go to the mall. Today we went to Dilli Haat market to get purses with elephants on them for Aunt Dianne. Two papier mache cows insisted that I buy them. And a little local boy insisted on tickling Cash's knee, much to Cash's delight. We also drank chai, which is simply called "tea" here.

Then we went home and had dinner and the sisters came to do their evening check on Cash. He likes to check his own blood pressure.

You will notice that there are no pictures of dinner or bathtime. That is because dinner was an hour late and we were so hungry I forgot to take a picture. And there is no hot water (ARRGHH) so there was no bath. But here we are asleep in our narrow little bed with the air mattress that inflates and deflates constantly all night long. We are dreaming of lentils and elephants, of course.

Listening in

A few minutes ago Cash wanted a chip. I said to him, "Let's go wash your hands first" and he walked over to the bathroom and got ready to wash his hands. This is not exactly new - he has been listening and following directions more and more lately, but it was a very strong example of the behavior.

It was so quick in fact that I thought to myself that I had better start watching some of my words because Cash is clearly listening alot. It also reminded me of a story that I have told before but bears repeating. When Cash was maybe 3 or 4, Josh and I were talking and I swore. Josh said "Do you want Cash to use that word?" and I replied "If we are ever lucky enough that Cash says 'fuck' or any word at all, I will throw a fucking party."

Also we bought some papier mache cows today and Cash made an attempt to sign "cow" (looked alot like horse, but frankly the signs are similar). AND he tried to sign "doctor" for the first time this evening. Go stem cells go!

Magnetic

Busy, busy day. Cash had his usual therapies, plus we went out for lunch (dosas, mmm) and did some shopping. Cash has made friends with a little girl here - Jenan - and they laughed and played during the afternoon. The clinic is very full right now which makes for quite a nice atmosphere.

Cash gets lots of love from everyone here - the sisters (nurses) cuddle on him, the doctors say "hi Cash!" with enthusiasm, Dr. Geeta keeps a stuffed frog in her office just for him, and the other patients welcome him into their rooms when he goes visiting. As usual, he is a little magnet for kindness and love and bringing out the best in people.

Chillin'

Today was quiet. It was quite nice to relax actually, but we will probably need to get out and about more tomorrow. Cash had a procedure today, but it was not a big deal. They took him upstairs, gave him a shot, and then brought him back to the room where he had to lie flat for 2 hours. We napped.

Dr. G thinks Cash's walking has improved since his arrival. It looks like his stance may be narrower - you'll remember that I have previously described his walk as being similar to that of a very drunk bowlegged cowboy.  Now his walk is more like a slightly drunk pop star - a little bit country and a little bit rock and roll.

Cash is currently playing Angry Birds and Twinkle Little Star on his iPad.

Seriously

Yesterday we went to the mall for dinner and the traffic all the way there was like some sort of horrible moving parking lot. It was insane. It is interesting to be back here in India - it is more ... exotic than I remembered. I do enjoy knowing my way around a bit and not having everything be a surprise. I also have a new motto: "shower when the water is hot." It isn't always hot, so I am not wasting any opportunities from now on.

CNN left yesterday after saying a brief goodbye. I am not going to lie - I am sort of sorry we agreed to do the TV thing. I am suspicious that the story is going to be negative and that I am going to look like a deluded idiot. I have been struggling with it for the last few days and it has been bringing me down. I guess my concerns are: 1) that Cash really has made progress from the stem cells, but I will look bad on TV anyway, or 2) that I am indeed a deluded idiot. Earlier today, I feared the latter. Tonight, I feel better, at least in part because Cash is doing so well. I look back on his progress after our last trip and I just can't help it: I believe that Cash improved in a bunch of areas in the weeks and months after. And now, while I don't see anything major, he is definitely flourishing. He exhibited some semi-new behaviors today, like brushing my hair, tickling Gramma, some manipulation of his fingers working on his fine motor skills, trying to sign for "poo", and attempting to connect the dots on his iPad. I was feeling sad the other day about just how disabled Cash is, but I don't think that means we should give up on him. It is important that we still try to get whatever progress we can for him and that we have expectations for him. I cannot be sure that the stem cells themselves have helped or will help him, but I can be sure that the whole process has been beneficial for him. So I am going to stop agonizing about CNN and enjoy our journey.

Feet on the ground

Well, it took 24 hours and a re-route through London, but we are here. We got in at 6:00am. Cash was still asleep, but he woke up almost immediately to play with us.

He looks great. He is pretty sign-language chatty, already demanding "more tickles" and asking for his computer. He is downstairs with Donesh now, doing PT. Donesh clearly has figured Cash out - he was using his phone to play music to motivate our stubborn little guy. Lots of the staff we know from last year are here, which feels very welcoming and comfortable. Also, Lucas and his dad are here - they were here last year, and Lucas says he continues to make progress. He was impressed by all of Cash's new accomplishments. I have also spoken to Dr. Geeta, and she is very happy with Cash too. We both noted how much healthier he has been this year and she said his walking has improved even since his arrival.

Less than 5 hours on the ground and already settling in -

Halfway gone already

I think CNN is in India as of yesterday. I hope everything is going well. I skyped with Cash last night and he looked good.

I leave for India in 2 days.

Double shot

Josh writes that Cash received two shots of stem cells today - very exciting. Last night when we skyped, Cash signed Mommy as soon as he saw me. It was gratifying.

I leave for India in 3 days! Plus I had a job interview today and I have another one on Wednesday.

At the Taj

Go along get along

With Cash in India, there is not much to report. I am busy like a freak with school - without him around, I mostly study. Though Mom and I did run up to Biltmore on Saturday - it was fascinating.

I have Skyped with Cash every day, and he looks great. Cheerful and cute as a button. Josh says everything is going fine, with 2 PTs a day and 1 OT. Cash will have his final round of antibiotics tomorrow, I think, and then maybe they can go out of the clinic and explore. Hopefully those stem cells are zooming around looking for areas in which to lend a hand.

Better all the time

Cash looked much better last night after spending some time on IV antibiotics. He and Pop seemed to be enjoying themselves, and I am very glad to see him looking more sparky. I myself have a little laryngitis.

Josh reports that Cash stood on his iPad and cracked the screen. He is an imp.

The stem cell treatment is up and going again, and Cash is doing his daily PT and OT. With the same therapists as last year! We liked Danesh and Harsha very much.

Sickie

Wrong-o. I was wrong - we didn't make it through this trip illness-free. Cash has gotten sick. Josh reports that he has a fever and is on antibiotics. We just Skyped and Cash looked pretty low. I am sad for him and wish I could be there to snuggle him. Plus of course he won't get any stem cells until he gets better. This happened last year too.

The neighborhood kids at Stillwater just mailed us a present - they painted a C,A,S, and H for us to hang on the wall. It is adorable - I miss that gang.