How to donate

Make tax-deductible checks payable to: Help Hope Live, with "In honor of Cash Burnaman" in the memo section

Mail to: Help Hope Live, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit (enter Cash Burnaman into the Find a Patient field.)

Tuesday, May 31, 2011


Now that he's feeling better, Cash is running around again.  He still falls, but he has more control overall. Plus he's into everything - his little hands are reaching, reaching all the time.

His new favorite book is Curious George. We're working on the sign for monkey.

A small boy in his pajamas:

Thursday, May 26, 2011

Basic needs

Whining, whining, whining. I said it back in India - Cash has started asserting himself and his wishes a lot more than he used to. While he was sick these last few weeks, he was quieter, but now he's back to whining his wants and occasionally throwing minor temper tantrums. I can't say it's fun, but it is good developmentally. Feeling frustrated he can't express himself will hopefully lead to more language.

In the meantime, we're hearing a lot of "enh, enh, eennnhh". And when you ask what he wants, it's almost always music or a cookie.

And really, isn't that what we all want - some good music and a nice cookie?!

Tuesday, May 24, 2011

He's my baby

This morning Cash signed "baby" when he saw his teacher's infant. I didn't even know he knew "baby". I keep thinking that the pace of change from the stem cells is going to slow down, but really it continues to be astonishing. His walk keeps getting better, and within the last two weeks he has signed "play", "baby", and sort of "horse", and he has started giving hugs. He's a remarkable little kid.

Monday, May 23, 2011

Feeling better

Cash is finally feeling a little better. On Saturday, halfway through his latest course of antibiotics for the sinus infection, he knocked over the bottle of augmentin, so we had to get a replacement bottle at Carl's this morning. But overall he's acting perkier, sleeping better, and starting to be mischevious again. Yesterday he discovered how to open the refrigerator and that's all he wants to do now - he pulls so hard that he lands on his butt and the door goes flying backward to slam into the counter. He wants to do this over and over again. When I stop him and try to interest him in something else, like a nice frog or kitty piano, he whines. I'm afraid that soon I will have to figure out some (very kind, very gentle) method of discipline. Saying no to him only amuses him - he knows what it means, but he thinks it is funny to keep doing what he wants. In India, Dr. Geeta told us not to "curb" him - he is a indulged little kid, I have to say - and I'm fine with that. The refrigerator door may disagree though.

Cash's preschool class was practicing for graduation this morning. They were learning how to work their tassles.

Gramma has become Cash's after-school sitter these days. They garden together and they cook. Cash and Gramma share a love of the song "Come Little Rabbit" and a dislike of combing their hair.

Wednesday, May 18, 2011


I had to go pick up Cash from school today - he has a sinus infection and apparently he was a little lethargic. Of course he seemed much better when I got him home.

He's been sick for three weeks straight now - first a cold, then pneumonia, then this sinus infection. It is exhausting. I wake up in the middle of the night listening to him breathe, trying to decide if he needs medicine. It would all be much easier if he would give up and breathe through his mouth sometimes, but no, he insists on trying to breathe through his stuffy, runny nose.

Speaking of sinuses, the word sinus now has a whole new meaning to me since I've begun studying EKGs. Last night I studied ventricular arrhythmias and atrioventricular blocks. I know you'll be interested to know that a type II, second-degree AV block has multiple p-waves followed irregularly, but often at a regular ratio, by QRS complexes. Installation of a pacemaker in that situation can restore a regular sinus rhythm.


Tuesday, May 17, 2011

Hug(e) news

Cash hugged me! Really truly with arms, not just leaning in. It was when I picked him up from Gran and Pop's this weekend - he hopped with joy and gave me a hug. He's done it a couple more times since, too.

Ahhh. There have been times I thought I'd never get a hug from this kid. But I have! I think maybe he likes me.

Monday, May 16, 2011


Aunt Dianne and I took Cash to WindWalkers for his horseback riding session on Saturday. Here is a picture:
He really seems to like the horses and the riding. Right after, I even got him to sign "horse" (hands like ears on top of your head), though he hasn't been as enthusiastic about doing the sign since. Beth, his teacher, agrees with me that he's much more responsive than he used to be and she noted improvements to his core strength.

In other weekend news, Cash fell and broke his glasses and he has a cold AGAIN.

Friday, May 13, 2011

Fixing broken hearts

Big happy news: I've been accepted into pacemaker school in Greenville, SC! The program starts in September and so Cash, Gramma, AD, and I will be moving in late August. I am very very excited and also scared - the coursework is going to be intense. I've lived in Aspen for over 15 years - it is home, and this is a big change. But I am ready for the next stage of my life, and I really want to install pacemakers! I feel a passion about it that I've never felt for any other work. My friend Lisa said that it seems I want to fix broken hearts - she is right!

Leaving Aspen will be brutal - we have a whole community here who we love and who supports us. For Cash, there's a team of teachers and therapists here whom I treasure. But they assure us that Cash will thrive in a community where there are more kids like him and the therapists have more experience with kids like him. Plus it's a lower altitude, which may help Cash's asthma.

So our time of change continues: divorce, India, now Greenville and pacemaker school. It is overwhelming, but it is also an exciting time and so full of hope.

Wednesday, May 11, 2011

Go, stem cells, go

Last night we practiced body parts with Aunt Dianne. Cash pointed to his tummy, his head and hair, his ear, his tongue, his knee, his elbow, and his belly button. He missed his nose by a centimeter, but still.

I also caught him signing "play" this morning, which is new.

I think Josh and I have come to an agreement that we're taking Cash back to India for more stem cells next December. Woo!

Tuesday, May 10, 2011


So now when you say to Cash "where are you going", he responds with a point. When he drops something, he tries to stoop to pick it up. When you say "let's go upstairs" or "let's go to the car", he does. And when you say "no", he laughs and ignores you, or he begins to cry melodramatically.

Cash's teacher Elizabeth writes a report after every day at school. Here are some excerpts from yesterday's report: "Walked ALL THE WAY from preschool to high school office and back!!...Used scissors with Tana - can squeeze to cut...Put in shapes - usually does circles but figured out the square today!...Also matched red and blue - can do blue with no problem". His progress lately is amazing.

Someone told me the other day that one study showed the incidence of some degree of autism as high as 1 in 38 kids (though I've more typically heard 1 in 110 kids). That sounds high to me, but there you go - we're trendy. Fascinators, sweet tea vodka, iPads, autism.

Monday, May 9, 2011

Walking pneumonia

Cash's cold turned into pneumonia last Wednesday, plus I got sick. It's been a really long, hard week, but we're both a little better now.

Cash's walking is improving all the time, despite being sick. It's now common to see him just walk around the house. He is constantly getting into things - I think it's like being with a 2 year old.

Mother's Day love to Aunt Dianne and Mom - they are the best and Cash and I love them so much.

Tuesday, May 3, 2011

Howdy there, cowboy

I don't think that link that I posted came through very well yesterday. There was a lovely article in the Aspen Times about Cash and his trip:

I have gotten used to seeing Cash walk over the last month, but I think I need to take a moment to note how much better the walking has gotten. He walks sort of like a cowboy just down from a horse - wide-legged, at a fast amble. But he's much more steady than he was a month ago, he can turn, and he can stop and start again. He walks pretty well even without his braces on. He spends a lot of time just walking between his favorite spots in the house - from the fridge to the kitty piano, to the bedroom, to his toybox, back to the kitchen. He is also working on stooping to pick things up.

Cash has a little cold. I feel like I write that all the time, but that is the reality of our lives. I love it when he is healthy for any stretch of time. During his first year of school, he was sick every 10-14 days, seriously - I documented it. We even dragged his oxygen tank to school a couple times. The next year it got better but it was still every 2-3 weeks. The big thing I notice now is that EVERY cold does not turn into pneumonia. It still sucks when he is all snotty and congested, but at least now he usually fights it off eventually

This morning like most mornings he hopped into my room at 6am and snuggled his warm soft body and cold feet up against me.