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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Friday, April 29, 2011

A little down in the dumps

Sheesh, what a day. I did mediation with Josh by Skype this morning - brutal. We have some issues around Cash that we don't agree on, but I think we made a tiny bit of progress today.

Plus it's snowing, argh.

Plus my car is broken again, my jeans are too tight, AD is sad, Mom's last day of work is next week, Alan snapped at me yesterday for something undeserved, and there's a Governance Committee meeting today. I'm just a mess of minor misery.

On the up side, Cash is tolerating his glasses well and yesterday was walking up a storm. Today he has a bit of a cold, which always makes me concerned. He's better at fighting off colds now, but I still worry about pneumonia and being sick still makes him restless at night.

I think Cash and I will spend the weekend relaxing at home. And playing Beethoven's Ode to Joy on the piano.

Wednesday, April 27, 2011

Big brown eyes

So, Kiddo is getting glasses. Again.

Cash first got glasses when he was about 6 months old and wore them until he was about 2 years old. He was pretty good about wearing them, though he liked to take them off and chew on them. It was tough for me when they told us he needed glasses - I was so sad he had this additional challenge - but then we got used to them and I started to think they were pretty cute. Still, it was nice when his eyes got better and he didn't need them any more.

But now Dr. Lenahan (NOT my favorite person) says he should wear them again because he is farsighted. The glasses should come in about a week. I had to pick some that were covered by Medicaid, so there were very limited choices.

Happily, his hearing tested within normal range. Thank goodness. I was dreading the hearing aid/glasses combo.

Another picture from when he wore glasses before:

Tuesday, April 26, 2011

Uphill both ways

Cash, AD, Gramma, and I went to Grand Junction and Moab this weekend. We toured through Arches National Park and Cash did his first little hike. For the rest of us, it would have been a 10-minute walk, but for Cash, it involved going uphill for 20-30 minutes. He did hold our hands.

I carried him up the last bit and most of the way down. Afterwards, he rehydrated and then fell asleep in the car.
We also did doctor's appointments in Grand Junction on Monday - eyes and ears. More about that tomorrow.

Friday, April 22, 2011

Two and a half cooks

I am delighted - Cash signed love yesterday and then again today. The sign is crossing your arms across your chest. He's been saying it improperly with only one arm, but yesterday he seemed to get it. I'll take a picture and post it soon.

Also we've been getting more imitative "oo"s. Really that's just huge.

Hailey and I made our cream cheese ice cream last night - it was not a roaring success, but we're determined to improve it. We were pretty hilariously inept in the kitchen - we had to start all over again at one point because we didn't temper our eggs and so pieces of them boiled right in the middle of the ice cream. Also Cash likes to try to help which means he screams with laughter whenever you use the electric mixer or stir anything.

Thursday, April 21, 2011

Hay-lo

Hailey and Cash:


I took Hailey driving yesterday - by that I mean, I let Hailey, who has just gotten her permit, drive my car. She did a very good job, we only almost died a few times. She and I are working on a recipe for cream cheese ice cream that we think is going to win us a cooking contest. One amusing thing: Cash has many many toys that make noise, especially ones that play music (I was opposed to these types of toys but then I had a child who adores them). Sometimes he gets more than one going at once, so we'll have the piano in the background, plus his MP3 player going in the corner, plus Cash banging on his drum. I'm semi-used to it, though I frequently walk around turning things off, but it can drive other people crazy. Hailey doesn't seem to mind that particularly, but she has developed a quick and deep dislike of his kitty piano - a very annoying instrument that plays songs about cats. It is extra annoying because Cash can mess with the tempo as well as the volume, which means that sometimes all the songs sound like dirges and sometimes all the songs sound like Alvin and the Chipmunks. Here is Hailey directing a fierce look at kitty piano. Later I caught her hiding it.

Wednesday, April 20, 2011

Swimmingly

Cash went swimming with his class yesterday at the ARC. He likes to swim, but he doesn't care about going under water, so you really have to watch him. Here he is with Elizabeth:


Hailey is here for her spring break. She is her usual beautiful, charming self. She is 15 now, with a long-term boyfriend, a constellation of health annoyances, and a plan to be a surgeon.

Hailey says she sees changes in Cash since India - which of  course is what I think, but it is nice to be validated.

Tuesday, April 19, 2011

Passport

Cash needs a new passport - he got his first one when he was about a year old, so it's time for a new one (especially if we're going back to India!).

He has stamps from Costa Rica, Mexico x 2, India, and China (because we flew through there to get to India). Not bad for a 5 year old. He's also been to Hawaii, Alaska, Puerto Rico, and on a cruise ship through the Caribbean, not to mention North Carolina, Pennsylvania, Seattle, and Las Vegas. When he was little, it was easy to travel with him - now he's more of a handful, though still remarkably good.

His current picture:

Monday, April 18, 2011

Quiet weekend

We had a calm, relaxing weekend. Cash continues to walk around the house - sometimes he does better than others. He grabs the wall occasionally like a drunk person. Yesterday I gave his feet a break and kept his braces off, and he walked anyway (though not as strongly).

Cash's cousin Hailey is coming for a visit this week. We're really looking forward to seeing her.

I'm trying to teach Cash to hug. If you ask him for a hug (or a kiss, for that matter), he leans in towards you but he won't put his arms around you or pucker his lips - yet. Here's my latest attempt to teach him:

video

Friday, April 15, 2011

Oooo

I think Cash is more vocal than he used to be. It is not like he is suddenly talking, or even babbling, but he generally makes more noise (mostly oooos and mmms). And for the first time ever the other day he tried to imitate me - I said "oooo" and he pursed his lips and did a little "oo".

Plus he is playing with his toys in new and different ways.

Thursday, April 14, 2011

Spring

I just want to take a moment to say how happy I am that we went to India and did stem cell therapy for Cash. I think stem cells are amazing. I still believe we'll know much more about them and how they work in 20 years, but we couldn't wait that long for Cash, and in the meantime, they have clearly had an effect on him. I'm proud we found the money and the hope to do this, and I'm proud we are on the cutting edge of medical research.

This morning as I carried him into school, I was thinking about all the stem cells swimming around in his blood, finding a place to latch onto, and then growing and blooming. I picture them saying "Well, let's help out here!". Of course I know the actual mechanics of how they work are prosaic, but stem cells make me feel poetic and exuberant. It's like it's spring inside Cash!

Wednesday, April 13, 2011

Busy

Last night Cash crawled in to the foyer and stood next to his walker. He was wearing his pajamas, so no braces, just bare feet. He looked at me and signed "help" - I got out his walker and he ran around the house for a few minutes. I figure he thinks his walker is fun and easy these days, compared to independent walking. But he soon abandoned it in order to walk alone.

He also tried to kick a ball the other day. While standing. He is very busy.

Tuesday, April 12, 2011

3 hippos at the door bring along another 4

Every evening Cash and I read a few of his books. He likes it and will occasionally request that I read to him or even go look at his books himself. Our current favorites include Baby Beluga, Your Personal Penguin, Who's Hiding in the Garden, and Max and Ruby. Hippos Go Berserk (1 hippo all alone calls 2 hippos on the phone...which then leads to an all night hippo throwdown) was a longtime favorite but apparently some child in China is now reading it since it was in the lost luggage. Last night we snuggled up to read Mother Goose, then Cash turned over and went right to sleep.

Two new signs recently: bear and sandwich.

The walking is going great, but the recklessness is taking a toll on Cash's face. He sustained a cut above his eye while at Gran and Pop's last weekend and a cut on his chin at school yesterday. He is walking more and better all the time, but sheesh, the falls are tough. And of course school photo day is Thursday, so all his injuries will be memorialized.

Friday, April 8, 2011

Met that goal, on to the next

The IEP meeting yesterday went well. A zillion people were there (well, like 12), and we met for 2 hours to discuss Cash's school progress. Overall, it was very positive, and a few people noted that they have really seen improvements since he got back from India. We did talk a lot about areas that he needs to work on, but of course that is the function of the meeting, and I'm wondering if it is also because people are raising their expectations for him. I hope so. Cash is still a slow little guy, and definitely different, but I think the stem cells have helped expand his horizon. We set many new goals for him and I know his whole team will work to help him achieve them.

I love Cash's school and all the people who work with him. I think they are an amazingly knowledgeable and caring bunch, and I am so glad that they (and people like them) choose to work with the special needs population. We should all be happy that this vulnerable segment of our society has advocates - and that they bring love and skill to their work.

In other news, last night Ariana held a party to celebrate the filming of a TV show at her house. It was very amusing, with fake dancing for the cameras and general revelry. I love to see Ariana all grown up (she's 23), and I am so proud of her. She is just a fabulous little person - smart, caring, beautiful, strong. I've struggled sometimes, especially when she was a teenager, because I love her and I want to take care of her, but she has parents and I didn't really have a role after she went to boarding school. I tried to just always let her know that I cared, and now she's kind enough to tell me that my love matters to her. So I take a lot of pleasure in her being the fantastic, interesting person she is.

Thursday, April 7, 2011

Bear

video

The dish ran away with the spoon

Asthma is really sort of terrible. Of course we all know that there are medications available and it is a manageable condition, but it is still scary. Cash was a little tight last night - it wasn't too bad, but it was stressful nonetheless. He has always been prone to pneumonia and now he gets these asthma-type events, so I've spent way too many nights trying to decide if he needs medicine and if so how much. I'm better now at recognizing when he's even a little off (last night he just sounded a little tight, not wheezy or anything), but listening to someone struggle to breathe is one of the hardest things I know. In my opinion, it's even worse than seeing someone in pain, because breathing is so fundamental. We have a lot of tools to combat Cash's asthma - not only an albuterol inhaler, but also oral steroids on hand and an oxygen machine that lives at our house - so we can hit it hard when necessary. Last night only required a few puffs of his inhaler, but still I worried and listened to him breathe all night. We're both a little tired today.

In good news, Cash is mastering silverware. He's fine at putting an already loaded fork or spoon into his mouth, but now he's working on spearing food too. I give all credit on this to Gramma, AD, and school - as we all know, at 39, I still don't like to use silverware.

Wednesday, April 6, 2011

Wednesday

I have a meeting at the school tomorrow to review Cash's IEP (Individualized Education Plan). I used to hate these meetings, but now I rather like them. Everyone who has anything to do with Cash at the school comes and we all say nice things about him while deciding what his goals for the next few months should be. I'm happy to think that we will have to set some big new goals, given his recent improvements.

Also tomorrow, Cash's class is going on a field trip to Rock Bottom Ranch. It's fun to be five.

Cash walks all the time now, btw. It is still scary, since he is very teetery, but also thrilling.

Other things going on in our lives: my friend Alex is coming for a visit this weekend, my car is in the shop, Mom may be out of a job soon, I'm trying to get my life organized in a million small ways, and a film crew is coming to shoot MTV Cribs at the Copper Palace tomorrow (the place where Josh and I met and had our wedding). My little Ariana is going to be a star!

Tuesday, April 5, 2011

Play

This weekend Cash and I were sitting around playing, and I pretended to make his stuffed Corduroy bear play Cash's musical drum. Cash laughed. A bit later he came over and picked up Corduroy's paw himself and hit it on the drum. More pretend play!

He does really like the drum (a lovely gift from his Aunt Melissa and family). He also loves his blue MP3 player (his "radio"), which was originally a gift from my dad's girlfriend Dot. We're actually on the 2nd version of the radio because he is so attached to it, and we need a new one - this one has literally gone all the way around the world, and shows it. Other current favorite toys: his frogs, his Fridge DJ, Scout the singing green dog, his computer, and both his pianos (the kitty one and the full size synthesizer).

I also gave Cash a haircut this weekend. It's pretty easy with the clippers, but he hates it. Luckily he forgave me for doing it.

Friday, April 1, 2011

If you're happy and you know it

Have I ever mentioned that Cash sings? He knows signs that go along with many of his favorite songs, and he does them with gusto. Last night, he was listening to his little blue radio (actually an MP3 player) and not only was he singing along, but in the quiet after each song, he would make the signs for the next song. He obviously knows the order of the songs, and sometime he skips past one to get to his favorites. Last night, I sang out loud with the music,which delighted Cash. Luckily, no one else was present to hear me.

He really is walking a lot around the house. He'll just take off and go.

Josh and I are struggling to communicate these days. He is out of the country until August. Divorce and co-parenting are brutally hard.