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, March 29, 2011

Living it

I was thinking yesterday that living with Cash these days is just flat out exciting. I was starting to tell someone that yes we've seen progress, but it's been slow, blah blah blah, and I realized it wasn't even true - the progress has been fast and fun! Practically every other day there's something new - signs for hat, piano, like, and water among others, physical improvements like walking, cognitive improvements like increased attention and new styles of playing. It's really fun. And it makes me think we should probably take him back to India in a few months.

Cash is hanging out with his teacher Elizabeth this morning while AD does DAV week with the Elks. She is wonderful and Cash really likes her.

Monday, March 28, 2011

On the move

Well, he really is walking. If he's standing and wants to go somewhere close by, he walks. Not long distances yet, but still! It is wonderful. And scary, since he sometimes falls.

Cash slept for 13 hours last night and I slept for 10. I think we are worn out, though we had a great time with Grampa last week. On Saturday, we went to the Sky Hotel and apres-ed (it was apres-ski for Dad, apres-laundry for Cash and I). We drank cocktails and swam in the pool. Cash, as always, fell asleep in the hot tub. It was a gorgeous, sunny day, and it was lovely to be with my parents and Cash.

Cash is now signing "water". He puts two fingers up to his mouth (it should be three), which makes it look suspiciously like he is smoking a cigarette.

We saw our friend Sheryl yesterday - she told Mom that it was amazing to see the changes in Cash.

Thursday, March 24, 2011

More walking

Latest report: Today Cash was standing at the counter in the kitchen and let go and walked to Aunt Dianne, who was on the couch. It was only about 5 steps, but this is really nice because in the past he would have dropped down and crawled over. This time apparently he decided he could do it, and did!

Also, he is enjoying hanging around with Grampa. Grampa drinks martinis, Cash eats olives.

On a side note, I feel a mess. About a zillion things are bothering me, and only chocolate helps. Which causes its own problems.

Wednesday, March 23, 2011

He is the best birthday present

Cash is sleeping with me this week because Grampa is bunking in his room. I do not like sharing a bed with Cash - he kicks - but I do like waking up with his fuzzy head next to mine. I just like to breathe the molecules that he has breathed, the molecules that have touched his skin.

Last night we went out for sushi for my birthday - Gramma, Grampa, Cash, and me. Cash ate his own tuna nigiri, as always, then fell asleep at the table.

Tuesday, March 22, 2011

Tickle me Elmo

Last night Cash made up his own sign for tickle. I was tickling him and asked how to say tickle, and he made a tickling motion on his chest. Generally, I want him to learn the signs we teach him, but I have to say I appreciate his creativity.

Also last night, Grampa observed that Cash is tricksy. This is not news to me.

We saw Dr. Kappy, Cash's endocrinologist, last week. Cash is still small for his age, but he is growing. He is the size of an average 4.2 year old (he will be 6 in July).

Cash has horseback riding today. We love WindWalkers.

Monday, March 21, 2011


Cash is sick with a cold. We were awake from 1:00-3:00am last night eating chips in bed, hopped up on albuterol.

Grampa is here. We went snowboarding on Sunday. My torn MCL held up fine as I did some baby jumps.

Tomorrow is my birthday.

Cash has added the sign "piano" to his repetoire. Unfortunately, it looks like "computer".

Thursday, March 17, 2011

You said you would, Mommy

Last night Cash woke up after he'd been put to bed. He was upset. I asked him what was wrong and at some point, he signed cookie. I told him we did not have any cookies, and he howled. Really howled. Finally I asked if he wanted chips and he nodded yes emphatically. I got the chips, he settled down (leaving salty little crumbs in my bed).

I said to him in a quietly serious way that it would be better to use his words when he wants something rather than getting upset, and that of course I would make every effort to get what he wanted if he would ask nicely. A moment later he carefully signed frog, please. I replied that Frog was asleep in his room while he, Cash, was hanging out in Mommy's room. Immediately, the face crumpled and the hue and cry began. I of course scurried off to get Frog, my bluff having been CALLED.

Wednesday, March 16, 2011


Cash's teacher Elizabeth reported that he walked 23 independent steps yesterday! I took him down to El Jebel to get his leg braces adjusted yesterday morning - apparently it made a difference.

Also, Cash's sign for "like" seems firm, and now he's working on signing "sandwich". He is so adorable.

He did have a little asthma last night. His breathing was a little tight throughout the night, so we hit it with some albuterol. He of course insisted on sleeping with me.

23 steps!

Monday, March 14, 2011


I have a new theory that when you open yourself up to the possibility of change, change comes at you. Most of the time it seems we make very few decisions - what to wear, what to eat, etc - and occasionally we make larger decisions - what kind of new car to buy - but even those have relatively little impact on the direction of our lives. But then sometimes something BIG happens and once you accept that initial change, then other possibilities seem to open up too. I don't know if Josh and I would have taken Cash to India if the idea had been suggested a year before - it might have just seemed too big. But Josh and I were already primed for change, and when I heard Amanda talk about stem cells last August, I just knew. I went home and cried because I knew we had to make it happen, no matter the expense, no matter the trouble.

It was so so so worth it. I look at that kid every day and see changes. He is just so much more present, so much more THERE. This morning he tried to sign "like", as in "I like the radio". It is exciting to be part of his life, it is exciting to be part of so much change!

Thursday, March 10, 2011


Yesterday Cash signed "computer" - first time I've seen it! AD says he was doing it in India.

And he is walking up a storm. I was trying to get a video of him walking yesterday evening, and every time I set him down, he took off. I love it!

Wednesday, March 9, 2011

You can leave your (pat head) on

The Boo is really doing well. Last night, we were hanging out with Maria and Gianina (my roommates from Chile) and Cash was engaged and playful. He did every sign I asked him to, plus he signed "hat" for the first time (pat the top of your head). Add that to "cookie", "radio", and "C" as new signs he has added recently.

I think it's amusing (and frustrating) that Cash has synonyms - like "pair" and "pear" in speech. For instance, Cash pats his chest to signify dog, horse, and drum. Those words are not synonyms in real American Sign Language, but they are for Cash, for complicated reasons. "Dog" really is patting your thigh (like you are calling a dog), so that's pretty close. However, "horse" is ears on your head, but Cash was taught at his horseback riding lessons to pat the horse to say go, so he generalized that to patting his chest to mean "horse". And then later, when I showed him the sign for drum (like you are using drumsticks), he defiantly patted his chest like he would pat a drum (since he doesn't use the sticks). Thus we have 3 different meanings for a chest pat. It's all about context.

Note to self: work is CRAZY.

Monday, March 7, 2011

Frankenstein after a few beers

Cash's walk is coming back. I didn't think he was walking well in India at all - he seemed to have jelly legs a lot (though he zoomed around in his walker) - but now, I'm seeing some good walking while holding on to just one hand, as well as 5-7 steps on his own. It is like watching a drunk Frankenstein walk, though - hands out, weeble-wobbling.

I'm still feeling very appreciative of having him home. Having a month to myself while he was still in India only clarified that my life only feels right when he is around.

Friday, March 4, 2011


We're having a welcome home party for Cash this Sunday, March 6, from 4:30-7:00pm at our home at 58 Fabi Loop. Everyone is welcome. Feel free to call me if you have questions 970.404.1595.

Wednesday, March 2, 2011

Small things

Cash seems to be doing all sorts of new things. They are all small, so they don't sound like a big deal, but taken together, it's adding up to a nice picture.

Coloring, new sign language, pouring into a cup, eating without stuffing his mouth, putting in and taking out more carefully, responding appropriately more often, sometimes (!) listening when you say "no" or "stop", a minor temper tantrum, identifying some colors, playing ball. 

Yesterday he was back at WindWalkers, and today he has Lisa, his PT.

Tuesday, March 1, 2011

From my heart

Now that Cash is home safe and sound (and starting to perk up a bit), I want to say again the overwhelming gratitude I feel towards all the people who helped make his trip to India possible. We couldn't have done it without you all - the love, the support, and of course the generous donations. It has been a gift to find out how wonderful people are - for me, that alone has been life-changing. I want everyone to know that we will continue to help Cash reach his potential (which might include another trip to Delhi) and that all your efforts on his behalf were worthwhile. We are learning so much - about stem cells, and about him - and it's clear this was the right thing to do. Thank you for sharing this amazing adventure with us!