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.)

Saturday, September 29, 2012

We really are home

We had a very nice, autumn-y Saturday. I spent the morning finishing unpacking from the move and setting up the apartment. There is always more to do, but I am happy with it so far. Cash's room is darling - I love to see our familiar friends like Johnny the Bear (from Grampa), the Sheep (from Alan, generously given during a Yankee Christmas exchange), and the horses (a picture from Gramma's room when she was little). Plus we have new friends, like the mouse painting I picked up in Orlando. Right now I hear music coming from the room - Twinkle Twinkle Little Star - Cash is in there playing on the synthesizer piano he got as a gift from AD's friend Terry.

Later we went shopping and bought lots of PJs. Some for Cash and some to be sent to Orlando for A Player To Be Named Later.

Cash got a haircut yesterday. I love it when his hair is short, I like to rub my cheek backwards along his head.

Thursday, September 27, 2012


Cash had a good day. He is trucking around all the time, listening, complaining, playing, initiating contact, cuddling, messing with things, and generally being a kid. This evening he saw me putting on a shower cap and commented "hat". Then while I was in the shower, he flushed the potty 5 times in a row (I can only hope nothing went down while I wasn't looking). He is in a bit of a Mommy phase - he does the sign alot, and he wants to hang out near me. I enjoy it, of course - but probably even more than most moms. I remember a time that I didn't know if I would ever see him express love for me. I worried I would always have to just know that he loved me, but I would never really feel it. But that's not how it has turned out. For years, I have known he is attached to me, and these days I feel gratified by all the "Mommy, Mommy, Mommy" signs and the way he seeks me out, makes eye contact, and snuggles. Tonight he fell asleep with his head on me as he often does, and last weekend he spontaneously gave me a kiss. I was still asleep and he leaned over and bonked me with his head (which is a Cash-style kiss). I love that he loves me. And I am grateful he expresses it.

Cash had a consultation with a specialist today about his leg braces. He had a short break from them this summer, but he will start wearing them a couple hours a day again starting tomorrow. He is not going to be happy about that.

Plus he is already banged up. He fell last weekend and skinned his knees (thank you Chris for the new band-aid glue stuff), and then fell at school on Tuesday and cut his chin. He is so adventurous and fearless, and of course we want to encourage him to try new things. But I hate it when he gets hurt. Every bit of him is precious to me, from his little toenail to his eyebrows.

I watched 7 hours of implant videos today. The procedures were happening live while we were conferenced in. Nice opportunity to learn while eating lunch and not having to wear lead.

Tuesday, September 25, 2012

Peaceful (relatively anyway)

I have been struggling a bit with this blog lately. It started as a way to communicate and track Cash's progress during and after India. I think it served that purpose well, and I have certainly made it clear that I think the stem cells did very nice things for Cash. He walked after the first trip, at age 5 1/2, and he stopped needing growth hormone after the second trip. Plus I firmly believe both trips increased his communication skills and improved his cognition. I see the results every day.

But we are done with stem cells, for now at least. And Cash's day to day life these days is pretty calm. He goes to school, he does new things slowly but regularly, and he is generally healthy. Being his mom isn't just like being anybody's mom - there are still plenty of issues unique to us and/or particular to having a special needs kid (like right now I'm fighting to get Medicaid for Cash, and sometimes sadness about his condition hits me like a tank), but in a day-to-day sense, things with Cash are steady.

On the other hand, our lives in a bigger sense have been full of adventure for the last year. And I keep wanting to write about that - about the move, the new job, the trials of co-parenting, how things are with my family - but that news isn't per se about Cash, and it is probably not appropriate for a public-access blog :-) So I am thinking about retiring this space...

In the meantime, right now at this moment Cash is playing Hey Jude on his iPad (he thinks it is Hey You which I know because he always points to himself during the song) and I am getting ready to put him to bed. This morning, I woke him, and Mom and I got him ready for school. He ate Cheerios. At 7:45, he got on the bus, I went to work, and Mom went to get her new driver's license. He got home at 3:30 - his teacher reported that he has made friends with Brandon, another kid in his class, and that they laugh all day long - and I got home at 4:30. We played and goofed off, had dinner, packed his lunch, bathed, and had meds. I chased him around for a bit trying to get a good picture to post. Tomorrow we will do it again.

Thursday, September 20, 2012



AD left to go back to Orlando.

Cash returned to school. He is looking perkier.

I am in process of booking flights for Cash to see his dad in October.

I have a terrible terrible sore throat.


Wednesday, September 19, 2012

More on being sick

So the upshot of the last week is that Cash has an ear infection. He had a cold all last week - it was aggravating but not scary. By Friday evening, though, he seemed a little off, so I took him to an after-hours clinic. The doctor declared him A-ok, but sent us home with a prescription for antibiotics in case we needed it over the weekend. By Sunday, I decided Cash needed the antibiotics, but the Rx couldn't be filled and a different doctor prescribed Albuterol, thinking it sounded like he had reactive airway instead of pneumonia. That seemed to help for a day, and his usual pediatrician looked at him on Monday and confirmed that there was no pneumonia. On Tuesday, he suddenly spiked a high fever and was super listless. Back to the doctor, who diagnosed an ear infection. 36 hours later, Cash finally looks much better.

I think that is all kind of boring, except maybe it provides an insight into why it is stressful for me when Cash is sick. It is a constant game of watching and waiting to see if the little cold turns into something more serious. There is no point in taking him to the doctor too early, because they send him home with the usual line about "it's just a virus", but yet you don't want to miss the moment when the little cold takes a bad turn. It is exhausting.

Plus his illnesses always take me back to when he was little and he would get sooooo sick and it would be very frightening. In fact, just today I was remembering the time that Josh, Cash, and I were crowded onto a hospital bed at 3am in the ER waiting for the doctor.

Anyhoo, he is getting better now. Poor AD was stuck with a sick Cash for her whole vacation.

Monday, September 17, 2012

Prince and the pea

Cash is now sleeping in his own bed through the night. The secret turned out to be buying him an expensive bed of his own.

Cash slept alone when he was very little, but then got grumpy about the crib and wanted to be with Josh and me. We worked out a routine where he fell asleep with us, and then we moved him to his own bed - which at the time was a cute blue Ikea toddler number with a huge green leaf over it. Sometimes early in the morning, he would wake up and crawl back to us. This routine went on more or less for years, including after Josh left. When we moved to Greenville, he had his own bed, but it was in my room, and it was cheap and flimsy. He abandoned it about half way through our sojourn in Greenville and decided he was supposed to sleep with me. That continued this summer because we were traveling alot, so he really got used to sleeping with me. I figured it would be impossible to get him to go back to sleeping alone. Nope - I bought him a real bed, and voila - there he is all night. So far anyway...

He stayed home from school today. Sniffles. But the doctor said it is not pneumonia, whew.

Sunday, September 16, 2012


A whale is only harpooned when he comes up to spout, they say.

I got harpooned after spouting last week.

I wrote about how healthy Cash has been this year, and of course he proceeded to get sick this weekend. His cold has turned ugly, but I'm not yet clear about whether it is just an agressive cold, a touch of pneumonia, or reactive airway. We will take him to the doctor tomorrow. It is a bummer since Aunt Dianne is here, and Cash is pretty listless and not alot of fun.


Thursday, September 13, 2012


Cash has a cold. That is never fun, but at least it isn't as horrible as it used to be. I want to take a moment to appreciate how far we have come - when Cash was little, EVERY cold turned into pneumonia. Either he would have a reactive airway disorder when he came in contact with a virus, or he would fail to move the junk in his lungs and it would get infected. We would try to get him to cough, we would thump his back (later we got a vibrating vest that they use on CF kids), but more often that not, we ended up at the doctor's office getting x-rays. Before we recognized the signs, sometimes that meant being in the ER at 3:00am. When he was very small, they used a machine called a Pigg-O-Stat to hold him still during the x-ray, which I admit I found amusing, though Cash did not. Then they would diagnose pneumonia and we would go home on steroids, antibiotics, and bottled oxygen. Honestly, he got pneumonia and/or reactive airway so often we LIVED WITH an oxygen machine as well as a prescription of steroids in the fridge.

And now a cold is usually just a cold. He hasn't had pneumonia since last December when he was on an airplane for 24 hours. I feel so grateful that we keep moving forward. Someday the diapers will be in the past, right?!

I am about to go email Cash's dad regarding a new parenting plan. Our original plan applied to the time when we were both in Aspen, and the last one was only in effect through this summer. Now that we are settled in Nashville, I hope we can come to a more permanent agreement.

Tuesday, September 11, 2012

Fun weekend

We had a great weekend with Valerie and Chris. We went to the state fair on Saturday - I think Cash liked the rabbits best. We did not take a stroller, so he walked alot but we had to carry him quite a bit too. We are in an awkward stage with walking. I like him to do it himself so that he gets stronger, but he cannot go too far without tiring or getting bored. I'm over having him ride in a stroller - I think he is too old - but I acknowledge that sometimes one would be helpful.

I also went out in Nashville on Saturday night with Val and Chris. It was so much fun and it made me appreciate this town even more. The scene downtown is fabulous - so many people, so much great music. And then we went to the Titans-Patriots football game on Sunday. I went to the dark side and rooted for the Pats with Chris.

And now Aunt Dianne arrives tomorrow! There is more fun to be had. Opryland, I think!

Cash has a little cold. Runny nose and generally snarfly. He also has a little scratch on his face. It figures that I found out today that tomorrow is school picture day. Of course.

Thursday, September 6, 2012


A brief description of Cash never describes him. That's true for all of us, but especially so for him. When I am forced to say only a few words about him, I usually say he is special needs. If someone asks for more detail, I mention that he has pervasive developmental delays - both cognitive and physical, is nonverbal, and is semi-autistic (depending on who you ask). And then I always add that he is delightful. But "delightful" probably sounds like a contradiction to anyone who has just heard the first description, even though delightful only begins to touch on the complexities of his personality and his way of moving through life. At 7 years old, there is no doubt that my little kid is a pretty severely disabled person who is unlikely to ever be "normal" - but I hate even writing that word "disabled" - what I wanted to write was that he is a pretty severely challenged little guy. Challenges vs. disability, you know?

And there is so much more to him than those challenges. A few minutes ago, Mom and I were looking at a picture of him from when he was 1, and there he was - his little personality already shining through. He is charming in the most peculiar way - he is not a quick smiler, he has difficulty with eye contact, he is not a hugger - and yet - and yet - he is utterly charming. Maybe it is just because I am his mother and I am absolutely charmed by him, but I think his smile once it comes is like a reward, his eye contact when you get it is like connecting with his soul, and his hugs, even his touches, are like grace.


Wednesday, September 5, 2012

New life

Yesterday I worked my first full day at the hospital. I am still in training (and will be for a very long time - you will be reassured to know that nobody is letting me program your pacemaker until I have been trained to death), and so I shadowed my mentor all day. It was great - lots of cases, lots of learning. Plus it had the side benefit of wearing scrubs, which are very forgiving if you have gained a few pounds over the last few months...

I came home after work to a house full of boxes. Our movers delivered all our stuff, which had been in storage in Atlanta for the last few weeks. It is nice to have access to all our things, but until I have time to unpack and organize, it is a mess. And I do not like mess. It drives me crazy. But I am trying to tackle small bits at a time and I know it will come together. Eventually.

Cash got his hair cut today. He is doing fine - seems comfortable in the new house, fine with school, generally healthy and happy.

Monday, September 3, 2012

New home

We pretty much spent all Labor Day weekend moving in to our new apartment and buying things to go in it. I find it stressful to make purchasing decisions, so it wasn't as fun as it sounds. Our movers should arrive later this week, and some of the furniture will be delivered next week. In the meantime, it is quiet around here.

Cash is doing well. Right now he is watching Daniel Tame Tiger on PBS Kids on his iPad. I don't know what we did before we got his iPad - he is endlessly entertained by it. Plus I like the way it sneakily helps him learn. I have it loaded with apps about the alphabet and colors.

He has teeth again - no more baby vampire. I was worried about how those big teeth would fit in his little mouth, but there they are.

Aunt Valerie is coming to visit on Friday, and Aunt Dianne will be here in 10 days.