A very long day

CNN was here today for their follow-up interview. I think it went fine. My two main points were 1) that I think Cash has made progress recently and I do attribute that to the stem cells, though I have no proof, and 2) that we will never know what stem cells can do unless we do research, and we have chosen to be a part of that research.
I went to Shriners' today to see Cash's PT. Katie and Laura are very sweet and very competent. They said Cash's shoulder strength has improved and he is stooping better.
In other news, we have had a tough day as a family today - we are all hurting, but I send some special love to AD.

Dude where's my car?

Nice stuff

Cash is working on the signs for Gramma and Aunt Dianne. He has picked up the general idea of the signs pretty quickly, but now we are refining them. He is also working on "egg".

Have I mentioned how much better Cash is breathing lately? It is such a pleasure. I am guessing it is a combination of living at a lower altitude and stronger lungs (due to stem cells?). And he hasn't fallen on his head recently - we struggled all autumn because his unsteady walking caused him to fall repeatedly and bang his head. It drove me crazy because of course he had to learn and that meant sometimes falling, but I hated the goose eggs on his pretty little head. I'm sure we aren't done with the accidents but I am enjoying the reprieve.

I am tired out. Off to study and then off to bed -

Wes, being eloquent

Apparently 60 Minutes did a segment on stem cell fraud last week. I didn't see it, though I do believe there are people who are using the promise of stem cells to take advantage of desperate people. This video is in response to the show, done by Wes, who was in India with Cash and Aunt Dianne last year.

http://www.youtube.com/watch?v=5A_gIQxaAUk

On the lam(b)

So last week was a little hectic mostly because I had a bunch of job interviews. Cash is doing well though - we're keeping up a slow and steady push on the potty training. He has hit the potty a couple of times, more through luck and our persistance than his participation, but at least it is a start. He got a haircut yesterday - longer on top, which we are trying to make a little spiky. While we were at the haircutters, I met the mother of another seemingly-autistic kid. She was very sweet and we are planning to have lunch tomorrow.

We also got the FBI to take Cash's fingerprints yesterday so we will know if he ever robs a bank.

Also, as of this week, we have eased up on the gluten-free diet. We aren't making any drastic changes, but we are going to allow a little more gluten and dairy. It doesn't seem to have made any difference in his health or behavior so far.

Thinking

So CNN is coming back to interview us in 2 weeks. I've been feeling stressed about it, worried about how we'll be portrayed, pressured to have Cash show some big progress to justify the trip. Today I decided to tackle the problem head on and think about what I really feel about our last trip to India.

I believe Cash is making very nice progress. He has some new signs, he is playing with his tongue more, somehow his face is more expressive, he is walking more strongly, he is super responsive, he is using his iPad appropriately, he is throwing more tantrums, he is working on potty training. Plus somehow he seems just a little different, qualitatively. But all of those things are small, and admittedly subjective. I can't prove any of them, and I certainly can't prove they are due to stem cells.

And I don't think I can convince either Josh or CNN to agree with me, and I don't think I should try. What I do think is that I get to enjoy his progress, regardless of what others think. Being the parent of a special needs kid is often hard and heartbreaking - also often wonderful and often routine - but sometimes emotionally devastating. As Cash's mom, I think stem cells have helped him - maybe a little, but maybe significantly - and that belief makes a difference in our lives. The actual progress Cash has made has helped in our everyday lives, but honestly so has the effort behind the stem cell therapy. Doing stem cells has put energy towards Cash and I know know know that has made a difference for him and for me. So maybe I can't prove that the stem cells are helping Cash potty train (though I think they are), but I can say definitively that the effort of doing stem cells has led to progress. And if CNN and its viewers want to judge me for that, so be it. Let them know what it's like to have no hope and then be offered a chance, no matter how small.

I should also remind myself that I have always said that stem cells are the great unknown right now, but we are a part of making more about them known.

"Hope is the thing with feathers that perches in your soul" - Emily Dickinson, poet. "And sometimes it makes a nest in your heart next to your aorta" - Stephanie Krolick, pacemaker student.

More fun to go on the floor

Well, it was a frustrating weekend of potty training. Some successes, some failures. Cash went in the potty properly on Friday - probably thanks to Aunt Dianne being very persistent in keeping him there until he went. Then over the weekend, I got him to pee in the potty a few times, and sign potty as he peed a couple other times, and other times he missed. And now, what I'm seeing is that he is intentionally waiting to go. Like we'll be on the potty, nothing happens, we stand up and move on, and then 5-10 minutes later, there is pee on the floor. This morning, we woke up and I immediately put him on the toilet - he went, and we celebrated (an M&M, singing, flushing, woo-hoo). While I was cleaning up, he went again - more celebration (more woo more hoo). So then he got down and went on to play. Not 5 minutes later - NOT FIVE MINUTES - he was sitting in a puddle. My feeling is that he is totally able to hold it. Anyone who can stop and start like that has some control. So now we have to work on making him want to go appropriately.

Lots of detail about potty training, but voila my life. Potty training and job interviews (3 this week, 2 next week).

Changes

We are switching to a sensory integration program next week for PT, OT, and Speech. It sounds promising, so we will see how it goes.

We have decided to do a push for potty training over the coming four day weekend. It may be a very loooonnng, messy weekend.

It's a Tuesday

Cash was at Shriner's Hospital today getting fitted for new leg braces. It will probably take a month until they arrive. He also did some OT there, but we may switch to a facility that specializes in sensory integration issues for PT and OT after next week.

Boo very clearly can use the iPad to ask for pretzels. Apparently the time is coming for me to buy the full (expensive) communication app.

I'm off to the gym to try to burn off all the pierogies I ate for dinner - and the chocolate I am going to have for dessert -

You mean there's more to it?

I haven't written in a few days - mostly because things are pretty calm and quiet here. I am doing school and job interviews, and Cash is motoring along doing his thing. He has been healthy and very alert. He has been playing with his tongue alot, and he has been sticking his fingers up his nose (until it BLEEDS, which is super annoying). He has been giving me little tongue kisses and some nice hugs. We are starting a new push for potty training - this morning I put him on the toilet and he peed. It was coincidence, I think, but still nice and we made a fuss. He is funny about the potty - as soon as I put him on it, he signed for book. The last time we tried potty training, we spent alot of time reading books while we sat there, so apparently he remembered. Also he uses the potty as an opportunity to play with his stuff. There you go: potties, the time for reading and messing with yourself - he's halfway to being potty-trained already.

Almost bedtime

Tuesday

Cash has an appointment with Shriner's Hospital tomorrow. We are thinking he will get new orthotics and start some PT.

We bought a potty today. And I had a job interview. Welcome to my life.

Our friend Susann has called to offer Cash a kind and heartfelt gift. I must say, SHE has been an amazing gift in our lives. Her generosity and thoughtfulness astounds me.

Home sweet home

Whew, long travel home. Our flight out of New Delhi was delayed by 5 hours (fog. dense, impenetrable fog.) and so we missed our connection. We ended up overnighting in Munich, where Lufthansa put us up in a nice hotel and paid for our dinner of spaetzle. Cash slept the whole 9 hours Delhi to Munich, but he (and I) were awake pretty much the entire 8 1/2 hour flight the next day from Munich to Newark. Happily, he is a super traveler - he sits quietly and plays with his toys.

Now we are home. Cash went to school today. He is really doing well. I know I was having a spasm of doubt about the stem cells before we went to India, based partly on the CNN interviews, but it is hard not to feel good about them again based on what I am seeing now. It's all small stuff, but it adds up. A bunch of new signs (he said "blue" for his dad on skype), signing "poo" when his diaper is dirty, the temper tantrums, using his iPad to make requests. Plus he seems stronger - his walking is more stable and his hands seem both stronger and better at fine movements. And ... this is hard to explain, but he seems more THERE. I guess by that I mean that he seems increasingly responsive and interactive. It is hard to explain. Anyway, he is good, and we are glad to be home.

Aunt Dianne bought Cash a new Blue Music for Christmas. His old one died a few months ago and we could not find a replacement. He was thrilled to see it, totally thrilled. He danced to the music, and he "sang" with signs :-)