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 helphopelive.org (enter Cash Burnaman into the Find a Patient field.)
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Wednesday, April 25, 2012

Reality star

The CNN special is scheduled to air at the end of May. I can't do anything about it, but if I had it to do again, I would do it differently. I would be more composed, less emotional, less sure about stem cells in general but more sure about the progress I have seen in Cash. I think there is a good chance the show will make me look foolish and Cash look unfortunate. I know that it is not going to show Dr. Geeta in a very good light and I am sad to be a part of that. But, like I said, I can't do anything about it now. So I will try to face this with grace and dignity, and then move on. No matter what the show says, it cannot take away Cash's progress. Whether CNN (and its viewers) believe stem cells helped Cash or not, I know what I see. And I am the one who has to get up every morning with him.

Speaking of, both Katie his PT and I think that Cash has shown an increase in cognition since our last return from India.

Monday, April 23, 2012

Open doors

School is out in 2 weeks, and we have a little graduation luncheon tomorrow. I need a job! But I am practicing patience. The right thing will come along, and being crazy about it won't help it happen faster.

Cash is percolating along great. I went to his PT session with Katie this morning - she said he is standing up straighter than ever. And she agreed with me that he listens all the time and follows directions often.

He has also taken to opening doors lately. Good skill, but may prove to be challenging in terms of keeping him where we put him. And I just watched him open the refrigerator, grab his milk sippy, and stand there drinking it inside the open fridge. We also had a family conference today about the fact that he eats nonstop from the time he gets home until bedtime. He is skinny, but still. We are going to try bigger meals, fewer snacks.

Thursday, April 19, 2012

Mommy would like some wine with that whine

Oh, the whininess, the whininess. Cash was so easy-going as a baby that I am still surprised when he complains or pitches a fit. He has been able to express an opinion for a couple years now, but he gets more sure, more vociferous, more demanding all the time. Right now he is mostly whining when he wants food (which is ALWAYS), when we are making him walk somewhere he doesn't want to go, and at bedtime. The problem is that for a long time he asked for so little that when he wanted something, we usually indulged him. Now that is impossible. We have to say no sometimes, and that makes him MAD.

Wednesday, April 18, 2012

Update

I've been lousy about writing recently. I think it's because we're mostly doing fine. School is almost over and I'm occupied with shadowing and interviewing. I wish I had a job already, but I haven't really wanted any of the jobs that have come along so far. There are a couple on the horizon that I am hopeful about...but I refuse to get my heart set before knowing more about them. The job market is tough - most of my class is still looking for employment.

And Cash is doing well. He was a little whiny last week and a little clingy this week, but I think that's just settling in to being back home. His walking is somewhat weaker than before break, but it seems to be improving. His PT and ST say he was really on at therapy this week - doing all kinds of small new things. Katie at PT credited his busy little stem cells.

Our housing situation is making me somewhat sad. Three adult women relatives in the same house - maybe it is just hard. I love living with Mom and AD, but we all have different styles and it seems to be wearing on us, especially in this small space. I love them both so much, and so does Cash. They do a ton for us and we enjoy spending time with them. But I know it is hard for them to not have their own homes and space. I'm not sure what will happen after I get a job. In the meantime, Cash and I are lucky to have them.

Thursday, April 12, 2012

Anesthesized

I went to the dentist yesterday morning to get a filling fixed and it wrecked me for the day. I did nothing but sleep (and, oh, do a job interview). I'm feeling better now, thanks.

School is almost over, though. I think our plan is to stay here in Greenville for a bit while I keep looking for a job. I have to say that it is stressful not to have a job yet, but I really think I'm still waiting for the RIGHT thing to come along. There are some promising things on the horizon, maybe a month or so out...

Cash is a little whiny since coming home. But he is healthy and talkative and engaged. He has access to all his music this week, but it is going away this weekend when we go back to potty training. This is going to be a siege war, not a quick strike, apparently.

Tuesday, April 10, 2012

Back home

We are settling back in to home. Cash is still struggling a bit to adjust to the time zone, and his walking doesn't seem quite as steady as before he left, but overall he is doing well. He eats three times as much as anyone I know.

Speaking of eating, our experiment with going off the gluten-free diet seems fine. We don't go overboard with feeding him either gluten or dairy now, but I don't see any changes in him at all since abandoning the diet.

I just read today that the current incidence rate of autism in the US is now estimated at 1 in 88 kids.

Monday, April 9, 2012

Why do birds suddenly appear, every time you are near

He's home - cute as ever and twice as naughty. We picked him up at 10:30 this morning after he and Katie had flown all night from Denver. She said he was excellent on the flights both on the way there and coming back. I said, of course, he is an experienced flyer. He seems to have had a good time with his dad in Aspen. I called almost every day and they seemed to be having fun. I know he got to see Gran and Pop and his cousins for Easter. I think he also saw our friends Susann and Sheryl during the visit.

He came home a little feisty - we went out to lunch and as soon as we sat down he signed bird and phone in a very demanding fashion. I knew he meant he wanted to play Angry Birds while he waited for his food - I explained that Mommy does not have an unlimited data plan the way Daddy apparently does (because Cash actually doesn't want to PLAY Angry Birds, he wants to follow the links to the videos). And then he threw a minor temper tantrum because he wanted the muffin that came with my meal instead of his own very tasty chicken fingers and fries. The tantrum did not stop until the muffin was removed from the table - at that point, he stuffed a french fry in his mouth while the sobs petered out.

Now he is listening to music on his iPad. I just stopped writing to smother and smoosh him with kisses. He is warm and fuzzy and soft and solid and a little bit mad at me.

BTW. I had a lovely week off myself. Lots of reading and adventuring.