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.)

Monday, July 30, 2012

Sunday, July 29, 2012

Birthday eve

Tomorrow is Cash's birthday. On Tuesday Cash flies with his dad to Aspen. On Wednesday I start my new job. I don't think I have said the words "I'm bored" in months.

Cash has started sticking his hand down his pants. Now I will not begrudge a small boy the opportunity to play with what he has got, but we do have to work on when it is appropriate. Plus for a day or two, it was pretty bad and he seemed to be itchy. So I took him to his new pediatrician and she declared he had a few chigger bites. Chiggers?! It sounds horrible. But apparently it is pretty common and there is not much you can do but put some hydrocortisone on the area to salve the itchiness. I must say that after years of Cash's every sickness being pneumonia, it is interesting that he now seems to get typical kids' ailments. Not fun per se, but certainly a nice change.

I hate that Cash is going to be gone for 3 weeks. Argh. 

Wednesday, July 25, 2012

Important day

It is Himself's 7th birthday next Monday! I am so grateful to have him in my life. It has been an amazing, eventful seven years - full of heartache and struggle and triumph and endless, endless love. He is blessing and a lesson, a reward and a guide. He is what gives my life form and meaning. I celebrate his soft belly skin, his fuzzy head, his joyful smile, his stubborn, mischevious spirit. I remember growing him - the quiet moments before his birth where the two of us shared everything - and I glory in his current incarnation of active little boy.

7 years! Woooo!

Tuesday, July 24, 2012

Moving forwards by moving backwards

Kiddo walked backwards today! I was at the computer and I looked up to see Cash giving me an impish smile as he moved his feet in itty-bitty backwards steps. It was adorable. And he was so pleased with himself.

Really, as I look back on it, he has been hot recently. A bunch of new signs - balloon, garden, butterfly, doctor (as of yesterday) - more spontaneous commenting on his surroudings, and greatly improved walking. Not only solid walking without braces, but enough control to go in reverse. Plus, he is using his iPad to work on colors, letters, and numbers. It is hard to tell exactly what he knows, because he isn't always motivated to give the "right" answer, but it looks like he is taking it all in. The "Meet the Colors" app is my favorite - the colors are all associated with cute little dancing powder puffs.

Just now, we turned his iPad on and he spontaneously signed "apple" when he saw the Apple insignia.

I still think the stem cells are making a difference.

I am feeding him M&M's as I type. He keeps walking away and then coming back but stopping halfway to take a few deliberate steps backwards before proceeding. It looks like dancing and it is hilariously cute.

Monday, July 23, 2012

Breathing clearly

We visited our new pediatrician today for a well-child checkup and a general get-to-know-ya. The doctor was exceptionally nice. Cash is now 46 lbs and 42 inches tall, which is quite little for a 7 year old, but that's who he is. The exciting news is that we are ceasing all asthma maintenance meds - Cash hasn't had an asthma-type event in ages and really hasn't been sick much at all for the last year since we left Aspen. For one, he is older and stronger, and secondly, he breathes better at a lower altitude. We will continue to keep a rescue inhaler on hand and we will continue to do a few puffs of his maintenance inhaler when he is in Aspen.

So! No more growth hormone and no more asthma meds!

Also, for the moment, no more leg braces. For the summer, we aren't using the braces in order to see how Cash's muscles strengthen without them. We may go back to the braces (or a new version) later this fall.

We are enjoying Nashville. Things feel a mite unsettled since we are still in transition, but the hills are beautiful and the people are notably kind.

Thursday, July 19, 2012


Cash was naughty top to bottom today. Right now he is hopping around on the bed beside me wide awake at 10:30pm. And this day started when he woke me at 7:00am. In between he threw about 5 temper tantrums, whined for long stretches of time, complained about walking, complained about riding in the car, slid down in his seat repeatedly during lunch, sat down in the middle of the grocery store parking lot, chewed on his glasses, refused to hold anyone's hand while walking, rode the elevator by himself, tried to use the computer at the school office, arched his back and threw a fit at being strapped into his carseat, etc etc. It was quite a demonstration of willfulness and discontent with the reigning authority (meaning me). After his complacent babyhood, I still enjoy it when Cash asserts himself, but I will admit today was long and it makes me sad when he gets frustrated.

We have had three busy busy days. We have now signed an apartment lease, found somewhere to live until the lease kicks in, registered the car, mostly registered Cash for school, made an appointment with a pediatrician to get Cash a physical, visited the Department of Health to verify Cash's vaccinations, started the Medicaid process, and checked in at the bank. Lots of stuff to do, but we are making progress. We are helped in our tasks by our diligent investigation of the local frozen yogurt places - though Cash doesn't show alot of enthusiasm for ice cream, which I find amazing. Who doesn't like ice cream?! Today I got him a cup of fruit instead - and he PREFERRED it. Weird little kid.

Monday, July 16, 2012


This week is a mess of apartment hunting, school researching, car registering, Medicaid applying, and various other -ings. There are so many decisions to make. One is done - we are living in the Franklin area (south of Nashville proper) where the schools are supposed to be excellent. We stopped by the district office today and to their credit, they took Cash in stride. As soon as we sign a lease, I will go and enroll him.

He was pretty hilarious today. We did alot of driving around, and at some point he got bored and mad and proceeded to pitch a fit. He was holding onto a rail in an elevator and as he squawked and wiggled, both his feet left the ground. I think it is the first time he has actually jumped under his own power. He looked surprised. And proceeded to try it again.

He is getting his new front teeth. No more baby vampire, instead he is all toothiness. 

Thursday, July 12, 2012

Monday, July 9, 2012


Today Josh bought me out of our Aspen house. I've kept my name on the mortgage for the last year until he could refinance and now it is done. I know it is for the best, and I am glad he kept the house, but it made me sad.

Cash is enjoying our time in Orlando. He and Aunt Dianne swim almost every day, and he goofs off a bit with Beezus and the cats. He dislikes the heat, but he is breathing well and he runs around Heather and Gib's house like he owns it. There is one small step leading from the dining room to the Florida room and Cash always pauses near it and asks for help rather than tumbling down it like he might have done a year ago.

Cash has a new word! He busted out "garden" the other day out of the blue. We were trying teach him "alligator" and somehow we said the word garden and poof, there it was. He is a delightful little mystery, listening all the time and then whipping out new words when we least expect it.

Sunday, July 8, 2012

Throw one back for me

We are definitely on vacation - very busy having fun. Yesterday the whole gang of us went to Gatorland where we ogled reptiles and ate sugar for hours. It was delightful. Cash did well for the most part, though he dislikes being hot. He walked a bit, then he sat in a rented stroller and accepted food bribes. Eventually he asked for his iPad. Really, if you asked him, he would always prefer to stay home and play with his toys - I'm not sure how I got such an indoors-y kid! I guess it comes from his difficulties with walking, but it takes an effort of will and patience to do an outdoors activity. He actually walks very well these days, but he likes to go where HE wants to go, and absolutely hates being told where to go. He likes to wander and visit and dawdle, and he hates going from Point A to Point B. It is challenging. But I forge on with the hope that some day he will appreciate an outing.

Today we went for a drive and ate at a German restaurant in Sanford. Cash gobbled up sausage and knocked down some German beer. Literally, he KNOCKED down a whole row of bottled beer in a refrigerated case. Luckily none of it broke. The salesperson apologized to us instead of the other way around and gave Cash a cookie for his trouble.

Thursday, July 5, 2012

Home of the The Mouse

We drove from Nashville to Orlando on Monday and are now spending a week with Heather, Gib, and AD. Heather and Gib's 3-bedroom house now holds 4 adults, 1 kid, 2 cats, and 1 dog. So far, it's amazingly harmonious. Beezus (the dog) looks a little surprised by Cash, but she has accepted him calmly enough. She tried to play with him once, which I appreciated as an effort on her end, but since playing involved mild chasing and pretend nips, she was told to stop. I felt bad for her. Cash thinks that both she and the cats are pretty funny. He occasionally points to them and laughs. But he doesn't often touch them, so they don't seem to mind him as a houseguest.

So nice to see AD! We missed her for the last ... what, it's only been 2 weeks?! But we are so used to seeing her every day that it has been a big change. Her new apartment is adorable and she is settling in well. Of course we don't expect to go long without visiting with her - she and Cash both need it, they are bonded like Super Glue.

Monday, July 2, 2012

Float like a butterfly, sting like a bee

Cash has a new sign! We were looking at a story on the iPad yesterday and Cash said "butterfly" without being prompted. I have been working on butterfly for ages, but in this case I didn't sign it, he did it on his own spontaneously. He is a funny little kid.

We continue to see nice progress since our last trip to India. It is not as exciting as after the first trip (the walking, obviously), but there have been some great advancements. For me, the biggest is that he is more engaged. He listens all the time and he wants to be a part of things. His eye contact is so much better than it was a year ago. He initiates touching us! (I got him to smack Gramma on the butt the other day. It was very amusing to me.) It is hard to quantify those changes for outside observers, especially since Cash is still very much a person who only shows what he knows when he wants to. Plus, physically, he is now walking around without braces. It is an awkward, loping gait, but no braces is a big improvement. He looks adorable in his bermudas with his skinny legs.