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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Thursday, December 29, 2011

Blood and guts

We are packed and ready to depart first thing tomorrow morning. Everyone agrees Cash is looking good and seems to have made progress. He is sitting here beside me right now, and boy does he look cute. He is bouncing around in an excited manner. And now he is leaning on me and playing Cee Lo on his iPad.

Cash had a bloody nose all day today. We think he poked at it. (It is one of his new things this fall - sticking his finger up his nose. Also his hand down his pants. Both are things that we have to knock out of his repetoire.) Anyhoo, his nose bled off and on all day and often he looked like he had some sort of gruesome hemorrhagic fever. Let's hope it clears up before we board an airplane and cause an international communcative disease scare.

I went over Cash's brain spect scan with Dr. G today. She says it looks good and we need to focus on teaching him because he is ready to learn.

As always, it is hard to leave our friends at the hospital, both staff and patients. The patients this time were particularly remarkable - Lucas and his family, Colleen, Mary, Amanda, Mrs. Gandhi and Sheel, Santush and his son, Vunch and his parents, Ryan and his parents, and Moodie and her family from Kuwait. Moodie's granddaughter Jenan was a great friend to Cash. All these people are amazing in their strength and their efforts to improve their situations - they have added immeasurably to our lives and we hope for the best for them. It takes courage to do this stem cell thing and to let yourself believe a change can happen - I hope it does for each of them.

Wednesday, December 28, 2011

What do you think?

Sort of amazing really....

I just looked over at Cash and he had a funny look on his face. I asked if there was something he wanted to tell me and he signed "poo". And indeed, he had a dirty diaper. That's the second time in the last two days he has done that. It is huge - a first step towards potty training.

Also, last night we were playing on his iPad and messing with his communciation apps. He used the app to ask for a drink and a cookie. And then he did it again. Multiple times.

Also, he attempted the signs for "cow" and "balloon". Sometimes we wait weeks, months in between new signs....

Cash is done with his therapies here. We are just hanging out for a few days (only one more day at this point), which is frustrating. I want stem cells every moment we are here!

Tuesday, December 27, 2011

Kiddos

There are alot of kids here at the clinic this year. I feel a painful kinship with all of their parents - these are people from all over the world who are just hoping to find something that will make a difference in their children's lives. I see the struggle, the sadness in their faces, and I wonder if my face looks the same. I think it usually doesn't, but it probably does sometimes. I see their pain, and I want to make it better. I want to make their children better, I want to take away the pain. Of course, I can't even take away my own pain, I can only work to focus on the good. For some of the parents, those with the most disabled kids, I can see that they would be so happy to have even the progress we have had with Cash. It reminds me that sometimes I am envious of people with "smaller" disabilities than our own. But today I am grateful for all that Cash is and all he can do.

Monday, December 26, 2011

Plant a Tree This Monsoon

"Plant a Tree This Monsoon" is a slogan around New Delhi right now. We are not in monsoon season, but I like it. I like it because it feels like we have been planting a few seeds ourselves lately and are waiting to see how they grow.

First of all, of course, is Cash. He is looking great - very responsive, engaged - but we will see how these stem cell seeds grow once we are home. I have seen some encouraging signs, including some interest in saying "potty", good walking, better interaction with people (lots of shaking hands and saying hi and goodbye), more temper tantrums, and better manipulation of his iPad. I love his little squishable self and am proud of all the work he is doing. He is a constant surprise, a constant journey.

And secondly, we have had the big change in my career. I'm halfway through pacer school and already interviewing for jobs. It's an incredible change and I feel enormously excited about it - excited about both working with pacemakers and the change in location that will come with getting a job. Today I traveled by taxi halfway across the city to a government hospital (free for anyone, thus long queues and hordes of people) to view some pacemaker procedures. I didn't get to see any pacers, but I did get to see ----- open heart surgery!! It was amazing, amazing, amazing. I saw 2 mitral valve replacements and one Fontaine procedure. I got to see a chest opened and a heart stopped, catherization, a stent implanted, and defibrillation to get a heart started again. I learned a ton, and I feel very intrepid :-)

So. go ahead - be bold - plant a tree this monsoon. Who knows how it might bloom -

Sunday, December 25, 2011

Christmas in India

Merry Christmas! We have had a lovely day. We went on a little mini-break and spent last night in a local hotel (where they had hot water). It was really very nice - everyone was super kind and it felt very festive. It is strange to say, but I felt more Christmas spirit today than I have in many years. I am not sure why. Maybe it was because the atmosphere seemed celebratory in the nicest possible way and everyone went out of their way to make us feel special. It was a truly wonderful, exceptional day filled with love and peace.

And Cash got an injection of stem cells just now - best Christmas present of all.

Friday, December 23, 2011

Gifted

Well, it's Christmas Eve back home. Not so much here. The clinic does have a Christmas tree and Mom has put some decorations up in our room, but doesn't really feel like Christmas. Which is fine, just a little weird. Plus for Cash and I, this is our second Christmas in a row in India. It is not a huge deal, but I do miss our family. We may try to go do something a little special today.

Cash is doing all kinds of nice new things on his iPad (speaking of Christmas presents).

What we do all day

Thursday was a semi-typical day at the clinic. Here is a description, with illustrations.

We woke up and had breakfast. Cash had an egg. Then we checked our email to see what happened in the States overnight.


Cash then got an injection of stem cells.
Then we headed downstairs for Occupational Therapy with Bhawna and Physical Therapy with Donesh.









After PT, it was 10:30am and we had a break until Cash's afternoon PT session at 2:15. We do different things different days but this day we went to visit our local market and bought chips and barfi candy. Then we went for a stroll through Deer Park. Cash usually rides in his stroller for these trips (the traffic is insane) but I made him get out and walk down the market for the picture. He was exceedingly grumpy about it though you can't tell. I had to take a million pictures to find one where he wasn't whining.

After 3:00pm, we were done with therapies for the day. Sometimes we just hang out locally, sometimes we go to the mall. Today we went to Dilli Haat market to get purses with elephants on them for Aunt Dianne. Two papier mache cows insisted that I buy them. And a little local boy insisted on tickling Cash's knee, much to Cash's delight. We also drank chai, which is simply called "tea" here.

Then we went home and had dinner and the sisters came to do their evening check on Cash. He likes to check his own blood pressure.

You will notice that there are no pictures of dinner or bathtime. That is because dinner was an hour late and we were so hungry I forgot to take a picture. And there is no hot water (ARRGHH) so there was no bath. But here we are asleep in our narrow little bed with the air mattress that inflates and deflates constantly all night long. We are dreaming of lentils and elephants, of course.

Thursday, December 22, 2011

Listening in

A few minutes ago Cash wanted a chip. I said to him, "Let's go wash your hands first" and he walked over to the bathroom and got ready to wash his hands. This is not exactly new - he has been listening and following directions more and more lately, but it was a very strong example of the behavior.

It was so quick in fact that I thought to myself that I had better start watching some of my words because Cash is clearly listening alot. It also reminded me of a story that I have told before but bears repeating. When Cash was maybe 3 or 4, Josh and I were talking and I swore. Josh said "Do you want Cash to use that word?" and I replied "If we are ever lucky enough that Cash says 'fuck' or any word at all, I will throw a fucking party."

Also we bought some papier mache cows today and Cash made an attempt to sign "cow" (looked alot like horse, but frankly the signs are similar). AND he tried to sign "doctor" for the first time this evening. Go stem cells go!

Tuesday, December 20, 2011

Magnetic

Busy, busy day. Cash had his usual therapies, plus we went out for lunch (dosas, mmm) and did some shopping. Cash has made friends with a little girl here - Jenan - and they laughed and played during the afternoon. The clinic is very full right now which makes for quite a nice atmosphere.

Cash gets lots of love from everyone here - the sisters (nurses) cuddle on him, the doctors say "hi Cash!" with enthusiasm, Dr. Geeta keeps a stuffed frog in her office just for him, and the other patients welcome him into their rooms when he goes visiting. As usual, he is a little magnet for kindness and love and bringing out the best in people.

Monday, December 19, 2011

Chillin'

Today was quiet. It was quite nice to relax actually, but we will probably need to get out and about more tomorrow. Cash had a procedure today, but it was not a big deal. They took him upstairs, gave him a shot, and then brought him back to the room where he had to lie flat for 2 hours. We napped.

Dr. G thinks Cash's walking has improved since his arrival. It looks like his stance may be narrower - you'll remember that I have previously described his walk as being similar to that of a very drunk bowlegged cowboy.  Now his walk is more like a slightly drunk pop star - a little bit country and a little bit rock and roll.

Cash is currently playing Angry Birds and Twinkle Little Star on his iPad.

Sunday, December 18, 2011

Seriously

Yesterday we went to the mall for dinner and the traffic all the way there was like some sort of horrible moving parking lot. It was insane. It is interesting to be back here in India - it is more ... exotic than I remembered. I do enjoy knowing my way around a bit and not having everything be a surprise. I also have a new motto: "shower when the water is hot." It isn't always hot, so I am not wasting any opportunities from now on.

CNN left yesterday after saying a brief goodbye. I am not going to lie - I am sort of sorry we agreed to do the TV thing. I am suspicious that the story is going to be negative and that I am going to look like a deluded idiot. I have been struggling with it for the last few days and it has been bringing me down. I guess my concerns are: 1) that Cash really has made progress from the stem cells, but I will look bad on TV anyway, or 2) that I am indeed a deluded idiot. Earlier today, I feared the latter. Tonight, I feel better, at least in part because Cash is doing so well. I look back on his progress after our last trip and I just can't help it: I believe that Cash improved in a bunch of areas in the weeks and months after. And now, while I don't see anything major, he is definitely flourishing. He exhibited some semi-new behaviors today, like brushing my hair, tickling Gramma, some manipulation of his fingers working on his fine motor skills, trying to sign for "poo", and attempting to connect the dots on his iPad. I was feeling sad the other day about just how disabled Cash is, but I don't think that means we should give up on him. It is important that we still try to get whatever progress we can for him and that we have expectations for him. I cannot be sure that the stem cells themselves have helped or will help him, but I can be sure that the whole process has been beneficial for him. So I am going to stop agonizing about CNN and enjoy our journey.

Friday, December 16, 2011

Feet on the ground

Well, it took 24 hours and a re-route through London, but we are here. We got in at 6:00am. Cash was still asleep, but he woke up almost immediately to play with us.

He looks great. He is pretty sign-language chatty, already demanding "more tickles" and asking for his computer. He is downstairs with Donesh now, doing PT. Donesh clearly has figured Cash out - he was using his phone to play music to motivate our stubborn little guy. Lots of the staff we know from last year are here, which feels very welcoming and comfortable. Also, Lucas and his dad are here - they were here last year, and Lucas says he continues to make progress. He was impressed by all of Cash's new accomplishments. I have also spoken to Dr. Geeta, and she is very happy with Cash too. We both noted how much healthier he has been this year and she said his walking has improved even since his arrival.

Less than 5 hours on the ground and already settling in -

Tuesday, December 13, 2011

Halfway gone already

I think CNN is in India as of yesterday. I hope everything is going well. I skyped with Cash last night and he looked good.

I leave for India in 2 days.

Monday, December 12, 2011

Double shot

Josh writes that Cash received two shots of stem cells today - very exciting. Last night when we skyped, Cash signed Mommy as soon as he saw me. It was gratifying.

I leave for India in 3 days! Plus I had a job interview today and I have another one on Wednesday.

At the Taj

Monday, December 5, 2011

Go along get along

With Cash in India, there is not much to report. I am busy like a freak with school - without him around, I mostly study. Though Mom and I did run up to Biltmore on Saturday - it was fascinating.

I have Skyped with Cash every day, and he looks great. Cheerful and cute as a button. Josh says everything is going fine, with 2 PTs a day and 1 OT. Cash will have his final round of antibiotics tomorrow, I think, and then maybe they can go out of the clinic and explore. Hopefully those stem cells are zooming around looking for areas in which to lend a hand.

Sunday, December 4, 2011

Better all the time

Cash looked much better last night after spending some time on IV antibiotics. He and Pop seemed to be enjoying themselves, and I am very glad to see him looking more sparky. I myself have a little laryngitis.

Josh reports that Cash stood on his iPad and cracked the screen. He is an imp.

The stem cell treatment is up and going again, and Cash is doing his daily PT and OT. With the same therapists as last year! We liked Danesh and Harsha very much.

Thursday, December 1, 2011

Sickie

Wrong-o. I was wrong - we didn't make it through this trip illness-free. Cash has gotten sick. Josh reports that he has a fever and is on antibiotics. We just Skyped and Cash looked pretty low. I am sad for him and wish I could be there to snuggle him. Plus of course he won't get any stem cells until he gets better. This happened last year too.

The neighborhood kids at Stillwater just mailed us a present - they painted a C,A,S, and H for us to hang on the wall. It is adorable - I miss that gang.

Wednesday, November 30, 2011

10 hours away

I skyped with Cash yesterday. He looked adorable. Apparently he is settling in well. I miss him.

Tuesday, November 29, 2011

Reaching higher

Himself and himself's father are in India and Cash has already gotten his first injection of stem cells. Go little cells go!

Something that has been on my mind lately: Cash's stem cell journey has taken me on a parallel journey back towards my faith. It is slow going, and I'll admit my faith doesn't look exactly like any particular church's, but maybe that is one of the (many) good things to have come out of this whole endeavor.

Sunday, November 27, 2011

Leaving on a jet plane

Cash and Josh just left for India. I will miss Cash so much.

So it turns out that having CNN around has made this process much tougher. Last year it was very difficult to make the decision to go to India and our departure was filled with anxiety and urgency. This year, I had been pretty calm about it - I knew what to expect and I knew what to hope for. But having CNN question the whole premise made me rethink it all - which I think is appropriate. I like that I take things very seriously and truly consider other viewpoints, but sometimes I envy those who are filled with a strong sense of their own rightness. - Anyhoo, I spent the last two weeks, and especially the last 3 days, really thinking about stem cells and our decision to try them on Cash. It sent me into a mini-crisis. I worried that I am fooling myself about the efficacy of stem cells, that we are wasting money and time. I worried that I will look like a gullible idiot on TV. I thought it all through and talked about it on film (arghh)  and went to some of the dark places. It was really tough. But ultimately I landed the same place I started: this is worth a shot. If this helps, I will be so happy. If it doesn't, then we will be fine.

I admit that if I had it to do over again, I wouldn't do the TV thing. It put more pressure on the whole endeavor.

And yet, Cash is off to India right now, and I am hopeful.

Tuesday, November 22, 2011

Fight on

Cash seems to be getting sick. The night before we leave for Savannah to spend Thanksgiving with the family. Sigh. And right before he has to sit on a plane for 20 hours. I am just hoping he fights it off before Sunday's departure.

I've been having trouble figuring out what to film for CNN. We've done a few of Cash hanging around and I've done one bit myself with some thoughts, but it's hard to know what they want or what other people might find interesting. For instance, Cash being sick is a real part of our lives. But it is a tedious, quiet stressfulness. He has been sick so often, but it never gets old, it never becomes routine. I always watch him like a hawk, waiting for the first signs of pneumonia. You can't take him to the doctor UNTIL he has pneumonia (until then, it is always "only a virus"), but you want to get him there immediately after he has developed it. And it's not like his belly button pops out and he says "okay, NOW I've got pneumonia" - no, you just have to watch and wait while treating him with every drug you can think of to prevent progression into pneumonia. Like I said, stressful - but not good TV.

BUT- Cash hasn't had pneumonia since he got back from India last February. He got it on the way there last year, and once while he was there but not since, despite any number of colds....  !!

Monday, November 21, 2011

Boarding Group 1

Less than one week until Cash leaves for India! I know from experience that my life has a huge hole when he is gone. Often I don't even know what to do with myself. I suppose this time I will study.
Cash's little head bump from last night seems to be not so bad, thank goodness.

Packing list: 7 pairs of jeans, 7 T-shirts, 4 PJs, 1 pair of slippers, 1 stroller, 1 iPad, plane snacks, a few diapers, meds, permission to fly, passports.....

Sunday, November 20, 2011

Ready to end this day

Sheesh, what a rough day. First we tried to take Cash to see Santa, but you pretty much had to commit to buying $20 worth of pictures and I was not into that for a kid who doesn't seem to care much about Santa. I was conflicted - on one hand, I wanted Cash to have the Santa experience, and I wanted to film it, but on the other hand, I felt Cash was likely to be unresponsive (or at least not $20 worth of responsiveness). I finally decided to just do it, but by that time Santa had gone on a break.

And then, this evening, Cash fell on his little round head. He was walking around the house, just doing his thing, and Aunt Dianne expressed concern about him tooling around on his own. I was like, he's fine, it's his house, he walks around by himself all the time. And then 5 minutes later, he bonks his head. Sigh. He'll have a big old goose egg on his noggin for Thanksgiving and for the departure for India. I know all kids fall when they are learning to walk, and all kids get hurt playing sometimes, but with Cash, we all try so hard to protect him, it always seems like you personally have failed when he gets hurt. Argh.

Saturday, November 19, 2011

One less tooth

A darling little tooth fell out this morning. It is tiny. Now there is a hole in the front of Cash's mouth (bottom, left side). I CANNOT imagine how a full size tooth is going to fit in that tiny mouth. I hope it takes awhile to come in.

The big question is: how much does the Tooth Fairy pay these days?

Cash leaves for India in one week. This has totally snuck up on me and I am unhappy about the prospect of being away from him. I told him about the trip this morning. He listened but he didn't react.

I have to say that he has been doing so well lately that it feels like a weird moment to take him to India. He is just so responsive and interactive. But of course if the stem cells accelerate that progress, it will be tremendous. Hope, hope, hope.

Thursday, November 17, 2011

Oops

Mom and I just finished cleaning the carpet from a leaky diaper. Have I mentioned how much I would like Cash to become potty trained?!

Tuesday, November 15, 2011

More ups than downs

Cash went to Shriner's Hospital today for an orthopedic workup. It took hours - x-rays, analyses, etc. They are getting him new braces and he will start PT and OT as soon as we get back from India. The people at Shriner's seem amazingly kind and knowledgeable.

I've had kind of a down day. I think it is post-CNN plus the Shriner's appt. Both of those are very good things, but they made me focus on the tough aspects of being Cash's mom. CNN forced me anew to think critically about the decision to try stem cells (of course we thought it through very critically indeed before deciding to go in the first place) and appointments like Shriner's always affect me. I think I just need a good night's sleep because -

Aside from my little bit of melancholy, Cash is actually doing extraordinarily well. He's becoming a freak on the iPad - he goes to his favorite places with regularity and navigates around. His favorite places include the magic piano, my iTunes, Talking Tom, his pictures, and Angry Birds. He also skype'd with his dad on Sunday and did an amazing job of showing off all his signs when prompted. He has been generally responsive and demanding. He is also a little pudgy - he has been eating a ton. He is still on his growth hormone, though I am fighting hard with the insurance company to get our new prescription covered. Apparently, he even did a puzzle at school the other day. He is really doing great!

Monday, November 14, 2011

Reflections

The guys from CNN just left - they were super super nice. They filmed Cash with his teacher at school and then did an interview with me at home. I'm of course worried that I looked like an idiot. (I know Cash did fine.) They asked why we went and they challenged me on the lack of evidence for stem cell treatment. I thought everything they asked was valid, it was just hard. I cried, of course.

Do we know the stem cells worked? No. Do I fear that we are buying a modern version of snake oil? Yes. But I BELIEVE that the last treatment had some effect. I see a difference in Cash, I see a faster rate of progress. But I own that I may be fooling myself. That is a horrible thought, but I suppose I can live with it. If I am fooling myself about the efficacy of stem cells, I know I am NOT fooling myself about his continual progress and I know that he has taken me on so many adventures, of which stem cells are only one. And I think we will know more about stem cells after this next trip. Hopefully that will be because we will see even more progress...

Wednesday, November 9, 2011

Semi-charmed kind of life

Another test tomorrow (12 lead interpretation), but a quick update:

Cash continues to explore his iPad and we continue to prepare for CNN's visit on Monday. Dad is coming this weekend and we are getting together with the whole family in Savannah in two weeks for Thanksgiving. We're busy, busy, busy.

Re: the challenges and blessings I referred to yesterday, I think the challenges are obvious. I wanted a kid so badly, and I would still trade almost anything for Cash to be "normal". But his funny little self has brought people and experiences to our lives that never would have happened if he was like everyone else. From all of his therapists to random individuals who talk to us at the mall, Cash has introduced us to amazing people. And he seems to bring out the best in people - we see their kindness and patience and love. In addition, because of Cash, we have learned sign language, gone to India, grown in our empathy for others, and had a rodeo thrown in his honor. While sometimes I struggle with changing my 6 year old's diapers or I get sad seeing what normal 6 year olds are like, I also have the joy of seeing my family rally around us and of seeing people be their best selves. I feel like we are semi-charmed - lucky and unlucky at the same time. And isn't that the way most people feel about their lives when all is said and done?

Tuesday, November 8, 2011

Tuesday

He's super into his iPad. I feel pretty delighted with my purchase. I am more hopeful than ever that it will prove helpful in teaching him and in facilitating him expressing himself.

Being Cash's mom is such a weird mix of challenges and blessings. Remind me to write about that tomorrow. Right now, I'm off to study for a test.

Monday, November 7, 2011

A computer of his own

Well, I did it. I bought Cash an iPad this weekend. While it is true that I am on a student's budget, I decided that I could not ignore the possibility that an iPad could help Cash communicate. I bought it on Saturday and already he has shown alot of interest. He is working on sliding and tapping appropriately so far, not so much actually using the apps. But I have downloaded a few picture-based language apps and we are starting to look at them. I'm delighted to see how interested he is. Of course, Angry Birds seems to be his favorite....big surprise, given my little addiction to smooshing the piggies.

A note: the iPad is Cash's computer. I have my own computer and don't plan to use his. He can grub it up any way he wishes as long as he is using it appropriately.

I had an IEP meeting at Cash's school today with his team. It was rough.

CNN will be here in a week! Cash is getting a hair cut tomorrow to prepare for his close up. I'm hoping we can manage to keep him free of stitches and bruises to his face for 6 more days.

Friday, November 4, 2011

Up all night

It's 11:00pm. Cash is up and strolling about. He took a nap this afternoon. I didn't think it would make much difference - ha.

As I sit here typing, Cash is next to me on his toy computer. It is one of his faves these days. Plus today I confirmed that he has figured out how to unlock my phone. I found him goofing off on it, dialing China and whatnot. In related news, we saw a feature on 60 Minutes last week where they showed children with autism using iPads to communicate. I'm a little suspicious that we should buy Cash one - I think he might be able to get a lot out of it. He already uses sign language, so he gets the idea of using words to communicate, and he likes computers. I don't know that he is quite ready for the full-out picture based programs, but I think maybe he should start the learning process. The problem is that buying an iPad is not cheap, especially since I don't know if he will use it appropriately. The money would be totally worth it if he would use it to communicate, but I don't want to just buy him an expensive toy. I'll have to think about it a bit more....

Cash has now moved on from the computer to his piano. Apparently we are having a dance party tonight.

Thursday, November 3, 2011

Wednesday, November 2, 2011

Never a dull moment

Cash dressed in his silk outfit from China for Halloween. Remember, we got it while we were on a layover in China last year on our way to India. He looked cute.

We visited Cash's new pediatrician on Monday. She was very nice. He got a flu shot and we are going to work on getting him some PT and maybe new braces. The doctor also said his lungs sounded remarkably good.

Every night Cash sleeps in his own bed until 4:00 or 5:00am. He then comes into my bed and goes back to sleep. I enjoy having his sweet little warm body to snuggle with except he is an active sleeper. He kicks and chases rabbits and pulls my hair. I've been thinking about moving and sleeping in HIS bed myself.

All systems go with the India trip. Airplane tickets bought, clinic reservation booked.

I've started pacemaker cases, btw. BiV implant at Greenville Hospital yesterday. I love it, but I'm still getting used to the cutting and the blood. But it is all for good!

Sunday, October 30, 2011

Oh football

Had a meeting with Cash's teacher on Friday. It was difficult. In Aspen, they spent more time focusing on Cash's strengths. Maybe they were coddling me, but I liked it. I know Cash is different, that he is not like other kids. Telling me all the ways he is not measuring up makes me sad and defensive. I don't think they mean it that way, I think they just want him to accomplish his goals, which of course I want too. But since he is my normal, I don't really want to hear about what is normal for other kids. We just aren't going to have that and while we should push Cash, I also think we should celebrate every new thing he does.

In that vein, Cash is learning the sign for "O" and for "football".

Wednesday, October 26, 2011

A little more serious

A very nice gentleman from CNN called yesterday to ask if we would be interested in participating in a show about stem cell treatment overseas. It is an overwhelming prospect, but a potentially exciting one. Heather knows some people at CNN, so she checked it out and all looks legit. Josh and I talked about it today - he is more reluctant than me. I feel like when we decided to do stem cells, we signed up to communicate about our experience, good or bad. I truly believe that in 20 years we will know a ton more about stem cells, how they work, what they work well on, proper treatment, etc, but in the meantime, we are on the forefront of this innovative medical technology. We are the ones adding to the store of medical knowledge, the ones trying to find out what works. As such, I feel we have a responsibility to share our story.

Josh is not as certain as I am that Cash's recent positive developments can be attributed to stem cells. I understand his doubt - we certainly cannot be SURE. But remembering Cash's progress from before India and seeing his progress after we returned (walking, increased responsiveness, etc), I just feel that the stem cells have helped speed up his RATE of progress. Regardless, Josh and I have agreed to return to India to give it another shot - I am glad he is willing to see what happens this time.

And maybe we will talk this all out on TV.

Tuesday, October 25, 2011

Greenville

We really like Greenville. It is pretty, the people are kind, the weather is pleasant, the restaurants are remarkably good, our apartment is cute. We do not get to stay - my school is clear that there are unlikely to be any jobs here, but in the meanwhile, we are enjoying it very much. Plus, Cash seems to be thriving. I think his breathing is much better here than in Aspen, he seems content, and he is working on all kinds of new things.

He is currently demanding a cookie. He eats ALL the time. He outgrew two pairs of jeans recently.

Monday, October 24, 2011

Resolved

I'm still pretty happy about Medicaid and India. That's all.

Sunday, October 23, 2011

Lots of good news

Cash got approved for his South Carolina Medicaid! Whew. I am very very glad. This process was way faster than Colorado's, though we still have some work to do. I've been covering Cash's insurance along with mine under COBRA since we moved and will likely continue to do so even though it is expensive. SC Medicaid will probably help with co-pays and hopefully some PT. Yay!

We've had a nice calm weekend. Cash seems especially sparkly. He played a new game with Gramma and me today (I don't know how to explain the game - it involves moving your hand from the bottom of the pile to the top), he has been working on opening doors, he now goes to the cupboard to choose snacks and brings them to you to give to him, he walks competently without braces, and he is really working on using utensils.

And hey! As of last night, it's official - we are going back to India. Josh will take him at the end of November and I will bring him back at the end of December. Since Cash started walking only two weeks after the last trip, I am excited to see what happens this time.

Thursday, October 20, 2011

Cool Britannia

Cash just got home from school. He looks super cute. He is having an after school snack.
I'm off from school this week for fall break. I spent today doing EKGs, yesterday I watched an implant, and tomorrow I am attending an all day followup clinic. Ha, not much of a break!

Wednesday, October 19, 2011

Busy boy, busy mom

Have I ever mentioned that being Cash's mom is often like being his personal assistant? This week, I am talking with Cash's insurance and his endocrinologist in order to try to get him a new growth hormone prescription, talking with his eye doctor and his ear specialist to get records of his last visits to give to the school because Cash failed his in-school eye and ear tests (he is non-compliant), trying to get him an appointment with a local pediatrician, trying to get him Medicaid (multiple forms and interviews), and talking with Josh to try to arrange our next trip to India. I think all parents are busy being schedulers/chauffeurs/personal chefs with their kids, but I do think Cash's medical needs add another layer. It seems I am always in process of arguing with an insurance company or rescheduling a PT appointment or trying to get Cash into a new program.

He's doing great, though. The staples have been removed from his head and he seems content and well.

Monday, October 17, 2011

Flying

We went to visit Aunt Valerie and Grampa in Raleigh this weekend. AV, Grampa, and I jumped out of an airplane. It was great. Cash stayed safely on the ground.

Thursday, October 13, 2011

My heart

Cash visited me at my school yesterday. He ran around poking buttons and messing with the model of the heart. I told him all about pacemakers and arrhythmias.

He knows where his heart is. Sadly, for that I have to credit Britney Spears - he has been a fan of "Oops I did it again (I played with your heart)" since he was 4 months old. I have no idea why.

Tuesday, October 11, 2011

Bumps

Josh and I are in the middle of heavy negotiations on the subject of taking Cash back to India. We're almost there in figuring out the timing and who will go. The important thing to me is that we give the stem cells another chance.

Cash is really working on eating with utensils. It is great to see.

The staples in his head look fine and seem to be healing well. I always get wound up and worried whenever he gets hurt or is sick. After 6 years, we have been through enough "emergencies" that I know that things will usually be fine, but in the middle of the precipitating event, I can't help but worry, worry, and worry some more. I'm better now at staying calm, but it is always stressful to decide whether a doctor's visit is warranted, and then after deciding to go to the doctor, whether the recommended treatment is appropriate. I know Josh and I were both anxious yesterday until everything was resolved. Today, it is clear this is just another bump in the road (and on his head).

Monday, October 10, 2011

Header

Cash and Josh apparently had a nice weekend. Josh and I are struggling to work out the details of the upcoming India trip - it is frustrating. We don't really agree, but I am sure we will find a solution that works for Cash.

We did have to take the Boo to the doctor this morning. Apparently he fell during breakfast with Josh and got a large gash on his head. He has a bunch of staples in his head now. That kid - if he doesn't stop falling on his head, I'm going to wrap him in foam rubber.

Thursday, October 6, 2011

Boo

Just said goodbye to Cash - he went off with Josh for the weekend. It's hard, I won't lie - I hate to be away from him at all.

I guess I'll go study.

Wednesday, October 5, 2011

Bumps in the road

My posts are so short these days. I feel bad. But I am just frantically busy with school - when I am not physically in class, I am studying, and when I am not studying, I am doing class-related activities, and when I am not doing any of the above, I am hanging out with Cash. He is busy too, though he seems less stressed by his school than I am by mine. I have learned SO much in the last 3 1/2 weeks - it is amazing. Test on sinus and atrial arrhythmias today. Big test on the 4 Faces of DDD Pacemakers tomorrow. Cash gets tested on using silverware appropriately daily.

Also I am sick as a dog.

Also Josh says he will be arriving in Greenville tomorrow.

Also Cash's school called me this morning to inform me he had bumped his head. He was fine, but they needed to inform me. The nurse was kind enough to tell me that when she had toddlers, she was embarrassed to take them to the pediatrician because she feared the doctor would think they were abused due to all their bumps and scrapes. That is definitely the phase we are in.

Tuesday, October 4, 2011

Tardy

The bus was late this morning and Cash was very disappointed. He got worried and made the sign for bus repeatedly.

School is going well. Ms. Jan seems a bit stricter than we have been used to, but I think that might be good. She is working on having Cash follow rules appropriately which is certainly new for him, since I spoil him rotten. It is a long day - pickup to dropoff, it is 7:45am to 3:30pm - but I think that is good since he is not doing extra PT or OT right now. And he seems to like school overall. He rushes in afterward and demands a snack.



Monday, October 3, 2011

Awake

I have a cold. Cash has had a bit of a stuffy nose for a few days and apparently his virus has decided to inhabit me as well. My nose is running a marathon.

AD is visiting Pburgh for the week, and Josh arrives here in Greenville on Wednesday to spend some time with Cash. We expect to make a decision about India while he is here.

Cash is refusing to go to bed tonight. Me and my virus expect to be asleep within 30 minutes.

Sunday, October 2, 2011

Sunday

So I ended up doing my presentation on Friday on autism. I shared a few cutie pictures of Cash and talked about what autism is, causes, diagnoses, and treatment. Everyone was very nice and said I did well. I hope so - I get nervous speaking before a group, but I kind of like it too. And with autism so prevalent these days I hope it helped people understand more about the condition.

To me, it sometimes seems like Cash is barely autistic. He is so responsive these days - talkative, interactive, responsive. But then I see him around other people or I see a normal kid and I remember how different he is. Nonetheless, I think we keep seeing progress in his willingness to interact with others. He is totally great about hi and goodbye now, and he will shake hands and usually make some eye contact. Plus with us, he gives hugs, pesters, and cuddles.

We had a good weekend. Yesterday, Cash, Gramma, and AD went to visit some horses to check out possible horseback riding lessons and today we watched some football. I checked out a church this morning with a special needs classroom - we may go next week.

Thursday, September 29, 2011

Little feet

Today Cash visited the orthotics (leg braces) specialist. The specialist made some adjustments to Cash's new braces to make them fit a bit better - his feet were pronating (rolling in) pretty badly. Cash's feet have a tendency to do that. So we'll see if his walking gets better now. - Though frankly he keeps improving steadily. He walks pretty well even without braces these days.

Tomorrow I am doing a powerpoint presentation to my class about Autism and Sign Language, with Cash as a side subject.

Wednesday, September 28, 2011

Spooning

Today Cash used a spoon ALL BY HIMSELF. Picked it up, ladled some food, took it to his mouth. Apparently school is really focusing on getting him to self feed. At this rate, he'll be ahead of me in the utilisation of utensils in no time.

He got some new glasses this week since he had chewed the other ones into oblivion. He also has an appointment with an orthotics dude tomorow to fix his leg braces.

For me, 3 tests down, 2 to go. Today's was brutally difficult. Everyone was freaking out a little. It was on single-chamber pacing, and I thought I understood the concepts....ha. The two tomorrow are on EKGs and pacing and electrophysiology terms.

Monday, September 26, 2011

Flourishing

Cash has quite a few new signs within the last month: monkey, banana, funny, sleepy just off the top of my head. He's really doing well. He's walking well even without braces, and he's often very engaged. He has been eating like a maniac - I think he is in a growth spurt. He is excited about school and riding the bus, and he seems to have adjusted to Greenville with his usual aplomb.

I did, however, bribe the people who live below us with candy to help them forgive us for all Cash's hopping and falling on his butt. I'm sure living below us is like living below a clumsy baby elephant.

I have FIVE tests this week. On the plus side, I have already learned so so so much. And I am starting to get used to wearing button-down shirts.

Friday, September 23, 2011

Reunited

I finished unpacking tonight and Cash's bear finally emerged from the box where he had been residing for the last month. Cash's expression of delight upon seeing him was priceless - I wish I had captured it on camera. Here is a couple minutes later:
This is home. At least for the next 7 months.

Wednesday, September 21, 2011

New normal

We are starting to settle into a routine here in Greenville We wake up early, then Cash rides the bus to his school, and Mom drops me off at my school. I study like a demon all day and I'm guessing Cash plays like an angel all day. Cash gets home around 3:15, I get home around 4:30pm, and we hang out during the evening. I study, Cash plays on the piano. Mom and AD do amazing support as our Pit Crew, including helping with dinner, baths, and entertainment. I've been freakishly busy - school is intense - but it is all settling down into a calmer routine.

Cash seems especially responsive and interactive recently.

Tuesday, September 20, 2011

That's funny

Cash is definitely doing the sign for funny. I need to find more signs he might be interested in.

A huge thank you from me to Gramma - she is being a great help in caring for Cash while I am in school. AD is always helpful, of course! She just got back from a visit to Heather in Orlando, but right now she is laid up with a fierce cold.

Sunday, September 18, 2011

Cold at the beach

We just got back from Myrtle Beach where I was attending a pacemaker conference (very informative and productive). The weather was gloomy so Cash did not get to play on the beach as planned. But he did get to see Grampa.

Cash is a little sick. It seems to be a cold, but of course I always have to watch these things with him. He was sent home from school on Thursday so I'm hoping he is magically better tomorrow...he has to deal with all these new germs here.

I think Cash is now signing "funny". I'll try to confirm in the next day or so. That plus the new signs for banana and sleep recently is a little exciting. Oh and I noticed that he says "star" - it is not ASL for star, but it seems to be the hand movement that the kids at school used when singing Twinkle Twinkle Little Star. I think it is fascinating how Cash acquires signs.

Wednesday, September 14, 2011

Wheels on the bus

Cash rode the school bus for the first time today. He did very well.

Actually, he is doing nicely overall these days. A couple new signs - banana, sleep - better walking, lots of cuddles and engagement. Also, we caught him doing the hokey-pokey the other day. The song came on his piano and he started walking around in circles (you know, the bit where "you turn yourself around, that's what it's all about"). He was delighted and surprised when Mom and I joined him.

However, we are struggling with the fit of his braces and he's been chewing on his $225 glasses. Both of these things are harder to fix without Medicaid.

Monday, September 12, 2011

School x 2

It is noon. I already dropped Cash off for his first day at school and my mom dropped me off for my first day at school. Cash is still at his school - happily, I am done for the day! We did introductions and expectations and now we are free to chill.

Cash seemed very happy to be at school this morning. He walked around and messed with things. He did not cry when I left. His walking was excellent and his attention was excellent, though he did not smile at his teachers or make eye contact. But he was clearly comfortable and happy.

After almost two weeks in Greenville, I am glad we are finally getting down to business.

Friday, September 9, 2011

Tough day

Awful, awful. Today I met with the special ed team for Cash's new school. It was just so hard. I know they are all nice people but it was so negative. In the past, we have always talked about Cash's strengths and then built goals from there and everyone talks about how much they love him. Today, we just used his existing IEP to talk about what would be appropriate placement for the coming year. They recommended that he be in a preschool classroom with 7 other mentally and physically handicapped children. I know that is what Cash is - I really do know it, I'm not stupid - but I hate HATE hearing it in a clinical way. It is brutal. It is devastating all over again.

I cried alot. Ultimately I think it will be fine - we visited the classroom and met his teacher, and it all looks good. In fact, I think Ms. Jan will challenge Cash in some interesting ways. She believes in the power of "no" which until now Cash has seen as a suggestion only. He will be in school (Mitchell Road Elementary) from about 8:15 to 2:15 Monday through Friday, and he will get Speech, OT, and PT each once a week. I think he will do well and they certainly seem competent.

On top of what was a very emotional afternoon, I'm now on my way to dinner with my ATI classmates. I am feeling some social anxiety. Some, ha, that's an understatement.

Wednesday, September 7, 2011

Rolling with it

Change in plans: school for Cash (and me) will start on Monday. I'm a little frustrated and Cash and I are both a bit bored. I knew it might take a few days to get everything settled here but it is still annoying to be sitting around. I think Cash is enjoying hanging out with me and having tickle sessions, but I also think he needs the stimulation of school. Oh well - I guess we should both enjoy our last few days of vacation.

Josh and I talked yesterday and we are starting moving forward with a return to India in December.

Tuesday, September 6, 2011

Truant

Scheduled to start school on Thursday! Tomorrow will be the evaluation - always a little tough for me, but moving forward in a good way. Plus Cash needs to be in school, he needs the stimulation.

BTW, it feels to me like alot of people here stop and say kind things to Cash. A guy at the Toyota dealership told me about his 7 (!) kids, 4 of whom are adopted and have issues. His smallest has cerebral palsy. When I have conversations like that, the pain and the love always get to me. The pain because of the heartbreakinng situations in the world, the love because many people are so kind and giving. And while I often wish Cash were normal, I also know that our situation has brought exceptional pain and love into my life and as such has enriched it immeasurably.

Cash is hopping around in a bored way looking for trouble. School can't start soon enough.

Monday, September 5, 2011

Sucks

Cash sucked today. Like at a straw. Granted, it was not strong enough to pull up liquid, but it is still progress. Mom has been working at getting Cash to suck through a straw for years.

Overall, Cash is doing very well and we are settling in. Cash already seems to know where home is and he toddles around the house with confidence. He has been playing with his toys and bouncing on his air mattress bed. Today we went to the mall to buy him a new pair of shoes and Cash walked around all by himself. There was definitely some whinging and whining and I did lure him forward with chocolate, but even so. Also, he seems to be getting the concept of "if then" statements, which is very helpful in that most important of child-rearing strategies: bribery.

I'm hoping to hear from Cash's school tomorrow. My school starts in a week, and I would like to see him settled before I start class.

Friday, September 2, 2011

Bureaucracy

Right now we are sitting in the new apartment waiting for the movers to arrive. Yesterday we ran around town, visiting Cash's school and applying for Medicaid. The school looks beautiful - very new and clean. Besides being a regular school (in an oddly ritzy neighborhood), it is a satellite school for some kids with disabilities. They seem well equipped to handle Cash and I think he is going to get excellent care there. We are now waiting to hear back from them to set up an evaluation and get enrolled.

The Medicaid office was an adventure. Cash and I are currently using Cobra to keep our United Heathcare because Cash absolutely must have health insurance, but it is expensive. If we can get him a different insurance it would be great. His growth hormone alone is something like $600 a month. And PT and OT sessions were at least $1000 a month in Aspen. I am worried that SC Medicaid will deny us, but we have got to try. 

Cash is settling in well. He seems to be adjusting fine and enjoying hanging out with me and his toys.  

Thursday, September 1, 2011

One little monkey jumping on the bed

We're settling in here in South Carolina. It's busy and stressful, but if adventures were easy, everyone would do them.

More interestingly, I was putting Cash to bed two nights ago (the night we got here), and he poked me in the belly and then signed love. He's never done that before. With Cash, I'm never sure when he does something new if it's deliberate or accidental, but I will say how really truly nice it was to feel like he had told me he loved me. Which I know he does, but it is always nice to hear.

Plus last night he signed banana out of the blue. We have showed him that sign, but I have never really focused on it. He's a funny little monkey.

And right now he is bouncing on my new air mattress bed.

Monday, August 29, 2011

On the road

It was really hard to leave. My goodbye party at work was beautiful and I felt surrounded by love. Aspen was an amazing experience and I can't believe I actually found the guts to leave. But I believe that life is about moving forward and growing - life changes on you whether you mean it to or not, so you might as well own it. I am not sure exactly where Cash and I will end up but I know we are off on an exciting adventure.

We are in Tennessee tonight, only 2 hours from our destination of Greenville. We have traveled for 4 days, and Cash and I have added 4 new states to our list - Kansas, Missouri, Illinois, and Kentucky. Cash has been excellent, mostly just calmly riding along. I hate having him immobile for so long and will be enrolling him in school ASAP. We have eaten at too many chain restaurants, seen too many cornfields, and heard Katy Perry's TGIF song too many times. I'm looking forward to being home. Our new home.

Thursday, August 25, 2011

Leaving but not on a jet plane

Leaving tomorrow!!! EEK!

On the other hand, I saw Cash with Josh yesterday and he looked great. He was stumbling around in his new braces, but he was verbalizing alot and generally making a nuisance of himself by getting into everything.

Monday, August 22, 2011

About me, not Cash

So Josh got home on Friday and picked Cash up on Saturday. Cash was standoff-ish to him, but I think that's probably healthy. I am sure he warmed up quickly later. Cash will be with Josh until we leave on Friday.

Final Music Festival concert yesterday! Whew, it's been an incredible 10 years. I spent most of the concert reflecting on the journey and getting ready for the next one. It was a great concert, followed by the post-concert dinner at the Caribou Club, and then Tentball. So much fun. And I got Alan to go to Tentball!

My last hike was also yesterday. Jamie and I climbed Midway off of the Lost Man Loop. At the top, as we sat next to the lake, surrounded by wildflowers and mountain peaks, I couldn't imagine that I could really leave Aspen. It freaks me out.

And then today, some of my favorite trustees surprised me with lunch at the Maroon Creek Club and a goodbye gift from the Board. I just don't have words....I'm not kidding. I'm sitting here and I really can't think of any way to describe my happiness, my sadness, my appreciation, my sense of wonder. The goodbye gift was amazingly kind, but the gift of the love and caring is what I hold in my heart.

Frankly, I'm getting that gift - the gift of love - everywhere I go these days. It makes it REALLY hard to leave.

Friday, August 19, 2011

It's a sign

Cash seems to be using his sign language less. He still signs, but it's less often. But somehow he is communicating alot. It's hard to explain. I can't tell if he is signing less because maybe he is thinking about talking (though he isn't babbling much at all) or if it is because I'm doing too much mind-reading/picking up on his cues. The argument against that is that he is not signing as much with other people either. And he really is very responsive - he follows directions and answers questions with a nod or shake - so maybe we are somehow subtly discouraging signs that way. I guess we'll see what happens.

In one week, we will be on the road.

Thursday, August 18, 2011

Love and leaving

I know my posts are really short these days, but it's just so busy. There's all normal life - school, work, baths, errands - plus packing and moving and saying goodbye.

This is Cash's last day at WindWalkers. They have been so great and Cash really does love horseback riding. I'm very appreciative that they made it possible for us to give him lessons and I do believe riding has helped his core strength. We will miss Beth and everyone at WindWalkers very much.

This was also Cash's last day at the Aspen schools. So hard to leave them! Everyone at the school for the last 3 years has been so kind, so smart, so caring. I think Cash has been extremely well taken care of.

Frankly, nearly everyone associated with Cash's care is exceptional, and the whole community has been so supportive of us and particularly our efforts with the stem cells. It has been an amazing thing to be a part of and is very hard to leave. We love you, Aspen!

Wednesday, August 17, 2011

We're sad

The movers are coming today. Arrgghhh - it's got me all grumped out. I know I want to move, I really am excited, but packing the last things this morning made me so sad. I'm saying goodbye to a whole phase of my life.

Cash was also a little funny this morning. He seemed fine while we were at home, but then he didn't want to get out of the car when we got to school. He wouldn't look at me. He didn't cry but it was clear he wanted to stay with me. Next week is going to be tough.

On the other hand, he's walking and responding like a monster these days.

Tuesday, August 16, 2011

Short-timers

Cash's dad is coming home on Friday after 6 months away from Cash. He'll pick Cash up on Saturday and have him until next Thursday when we leave for South Carolina.

Things are a bit chaotic getting ready for the move. Cash looks unhappy that so many of his toys are gone (packed) and I am just crazy busy. We are all a little bit on edge.

Cash is at summer school this week. He seems to be enjoying it - no crying when I leave him. I hope our new school in Greenville is nice. I'm suspicious that Cash will have an adjustment period after the move where he isn't too happy, but I'm hopeful that he'll settle down soon. He's used to having me, AD, and Mom around, and as long as he's with us, I think he'll go with the flow.

Monday, August 15, 2011

Listening in

Cash is just getting more responsive. He really listens. It is interesting for me - has he been listening all along and just couldn't act on it? Or is the processing new? Regardless, it is so fun to actually talk to him and have him respond.

This morning I told him we were moving. I don't think he understood, but he definitely listened.

Final Board meeting today. I cried.

Friday, August 12, 2011

Thursday, August 11, 2011

Crazy busy

Busy!! 2 more weeks left! Packing! Goodbye lunches! Board meeting Monday! National Council meeting Sunday! More packing! More goodbye lunches! Buying a new computer and hard drive! Governance Committee meeting Monday! West Side Story dress rehearsal Saturday! Arranging Cash to visit G & P this weekend! Arranging movers! Looking at mountains and crying!

Yikes.

Wednesday, August 10, 2011

How do you get to know someone who doesn't talk?

The other day Megan said about Cash that it surprised here that with seemingly so few ways to get to know Cash, how much she actually does know about him.  
I like that. I think some people assume that because he does not talk, he does not communicate. In fact, if you spend much time with Cash, you find out that he is a very definite person, with a definite personality and definite preferences. You just have to listen to him, to pay attention to his signs, his eyes, his actions, his moods. I do sometimes wonder what goes on in his head but that's true for everyone. He is mysterious, and yet he reveals a lot when you are paying attention - in fact, he reveals more every day as he continues to open up since the stem cells treatments.


Tuesday, August 9, 2011

The eyes have it

Yesterday, I drove 5 hours (2 1/2 hours each way) for 10 minutes with Cash's eye doctor in Grand Junction. These are the things you miss if you are elsewhere, say in Spain.

Dr. Lenahan said his eyes look fine and he should see a doctor in about 6 months. Cash himself whimpered from the moment we got to the office building and flat our hollered during the appointment itself. As soon as it was clear we were leaving, he perked up and zoomed out.

Speaking of eyes and glasses, here's an interesting thing about how Cash's mind works: I showed him the sign for "hat" a few months ago (patting your head) - he liked it and he does it alot. Well, now it has become clear to me that he uses that same sign to mean "glasses". It's frustrating because it is wrong, but I also like that he generalized. Hats and glasses do both go on your head, after all.

Cash woke up at 1:30am Sunday night with a bit of a cold (again, the fun things you miss if you are not here). His nose is running and he's a little grumpy but otherwise, he seems fine. I hope it doesn't get worse because I already sent the oxygen tanks back to Lincare.

Cash is back at the public school summer session as of yesterday, no more daycare.

Friday, August 5, 2011

Music

I went out with Megan (our music student from last summer) last night for drinks and dinner at the Nell - we had a fabulous time. It was interesting to hear her thoughts on Cash's love of music. She says it is fun to play for him because he gets so engaged. She also suggested something I had never thought of - that Cash changes the songs on his toys all the time as his way of being creative since he does not have the fine motor skills to play himself. I find that an interesting idea. Also, we talked about how Cash clearly does not have perfect pitch. He really doesn't care if something is in tune (definitively evidenced by the fact that he likes my singing), so what is it that he does like so much about music? He's liked it since he was very very small, and while he does have preferences, he is pretty much happy with anything. I don't understand it, but I honor it. 

Here is Cash listening to Megan play. When she stopped, he signed "more please".

Thursday, August 4, 2011

Progress

I haven't really done an update on Cash's progress lately. Mostly that's because there's nothing big to report. He continues to improve his walking - he still walks wide-legged and stumbles sometimes, but he is more stable and he does more maneuvering. He continues to use his sign language, and he has become much more responsive. That's one of the biggest changes lately. He answers yes and no appropriately and follows directions (when he wants to). He's maybe more playful - he has always had a sense of humor, but I think maybe he laughs more and wants more interaction than he used to. And I am happy to report that he has been healthy the whole summer.

I adore him. He is so snuggly and soft and fuzzy and funny.

Wednesday, August 3, 2011

Free your feet and the rest will follow

Cash was kind of grumpy last week - didn't want to walk, didn't want to play. We got him new shoes yesterday and it's like the sun came out. This morning he held my arm while I brushed my teeth, he smiled a ton, and he waved at a stranger when introduced. He wants to go down the stairs by himself too - he keeps walking right up the edge and staring down. It makes me nervous.

Also, his lip is healing nicely. He is one up on me - I'm doing dry needling treatments for the pain in my back (still from the car accident 3 years ago) and I look like I've been beat up. It hurts terribly when the needles are stuck in, but I do believe it will help in the long run.

The movers are coming August 17. The house is full of boxes. And yet there is so much more to do...

Monday, August 1, 2011

Six is a serious age

Cash had a very nice birthday. We celebrated by riding the gondola to the top of Aspen Mountain. Uncle Gib got us comped for entry to the Aspen Mountain Club's buffet, so we ate crab legs and tuna and omelets and mango and goji berries to our hearts' content. At home, Gramma made Cash a gluten-free cake which we let him eat with his hands. He seemed pleased. This picture is from before he had cake smeared from ears to belly button.
He also Skyped with his father earlier in the day.

And now he is six. Let the wild rumpus start!


Friday, July 29, 2011

Birthday eve

Tomorrow is Cash's sixth birthday. I remember six years ago today - we were sent to the hospital because my blood pressure rose, but I felt fine. Josh and I hung out all afternoon and evening, lying in the hospital bed and watching tv. I remember we talked about having Cash wait two days so he could be born in August. It was peaceful. And then the nurse came in late that evening and said firmly that due to my blood pressure we had to induce. So we went to sleep and the next day, along came Cash.

Thursday, July 28, 2011

Magical creature

It's like someone waved a magic wand over Cash's lip, it is healing so fast. Amazing.

Omg, 4 weeks til we leave.

Wednesday, July 27, 2011

Once bitten, twice shy

Yesterday around noon I got the call from daycare. It is never good to get a call from daycare. The dread descends immediately and is only partially lessened when they say "Cash is okay, but....". Yesterday's minor emergency was that Cash had fallend and cut his lip. It was bleeding alot and they were concerned he might have bitten through. Ugh, just the thought makes me sick to my stomach. So I hopped into the car, zoomed over to school, and checked him out. He looked sort of fine, but there were two bitty cuts near his lip that looked deep. We decided to go the doctor rather than the emergency room. The result is no stitches, though he probably did bite through his lip. Cash seems fine today and it already seems to be healing.

He is an adventure.

Tuesday, July 26, 2011

Tuesday

Thank you to Dana and Gene Powell, and to Barbara Koval and Michael Solheim for their support of our endeavors to help Cash with stem cells! Amazing generosity, it just makes me cry.

And Cash continues to thrive. He's an active little guy these days - walking and learning and playing. He's more work than he used to be - it's great.

We have exactly one more month in Aspen.

Heather will be here in an hour.

Friday, July 22, 2011

Why do birds suddenly appear

Cash is initiating more physical contact these days. Last night, he hugged me, he asked me to pick him up, he wanted to swing on the hammock with me, and he cuddled at bedtime. It totally charms me.

Thursday, July 21, 2011

As sands through the hourglass

I mostly use this space to write about Cash, but I'm going to take a moment to make a record of the other things going on in our lives.

First of all, we are moving in FIVE weeks. I have started to pack but there is still a long way to go. We have found an apartment in Greenville, but we are still looking for a mover and we will have to get furniture once we get there. I need to sort out our insurance and Cash's school once we get there too. Josh is buying me out of the Stillwater house, but we are still waiting on an accounting estimate from our CPA. Mom and AD are living with Cash and me in order to save money this summer and that is proving to be an adventure. We are still working out the kinks of being roommates. Sometimes working out those kinks is painful.

Also, I am starting to get emails from pacemaker school. I need to buy a computer, I need to buy books, I need to decide if I am going to a conference, I need to start getting my head around studying a very complex subject. I got a little scared today of the intellectual challenge ahead.

Also, Cash has had and will have a bunch of appts before we leave. I need to take a full day off to take him to the eye doctor in Grand Junction in 2 weeks. He has an appointment with his braces specialist soon too, and of course every day he has school and/or therapies. Mom has been invaluable as his chief handler and assistant.

Also, Heather and Gib are visiting next week. I am really looking forward to it, I just wish I could have more time with them. I don't want to spend time packing or whatnot while they are here.

Also, the back injury I sustained from my car accident three years ago is acting up again. I am doing some chiropractic work as well as having a physical therapist stick needles in my back about once a week. I am not exercising and I am eating chocolate at a fearful rate. 

In the meantime, I am still working full time at the Music Festival and it is just crazy here. It's crazy every summer, but the point is that it doesn't allow for much else - which is fine usually, I just work to death - but this summer I have other things I have to do that aren't getting done! (See above.)

Wednesday, July 20, 2011

Generosity

Jim just called to let me know how much money he raised at the Wild West Show for Cash -!!! It kills me. I SOBBED when I heard the amount. It is difficult for me to describe how I feel when people make donations to Cash - the gladness, the relief, the sadness that we are even in this situation, the desire to repay, the desire to live up to everyone's hopes, the overwhelming sense of gratitude. It makes me feel humble. It also makes me feel like I want to be a better person. I try to express these feelings by using the money to get Cash his stem cells, by telling people about it, and by trying to be a force for kindness in the world.

It's a little easier now to accept the money in some ways, because we know for sure that stem cells help Cash. I know that the money will be used to improve his life, that it will make a difference. I believe that the people who donate to Cash want that for him and that makes it easier for me to accept all this generosity.

Tuesday, July 19, 2011

An email from Gramma

Gramma sent this email out recently:
People ask us if Cash has shown improvement since the stem cell trip.  This week is 5 months since he got back from India.
1.  He is walking most of the time.  And usually wants to do it himself.  If you ask if he wants help, he nods his head with a definite "NO!".
2.  At the Wild West show the first day he was introduced as "Cash Burnaman".  The second day he was introduced as "Cash Burnaman riding Skippy".
3.  His Speech Therapist said that he is showing wonderful signs of talking.  Bubbles, B noises,tongue action,vocalizing
4.  He hugs.  Leaning in, arms, cuddles, and smiles.
5.  If you are someone he knows he likes he will smile, make a happy noise, and give you a high five.
6. He signs hello and good bye.
7.  "Hey Jude" has replaced "So You had a Bad Day" as a musical favorite.
8. He is a pain in the neck at a restaurant.
9. He gave his WindWalker Horse Gunnar a spontaneous hug at the end of his ride.
10.He knows and will get a specific toy or book.
11. If you say, "Look at the ------.  He does.
12.  When he was refusing to walk and I was letting him sit on the sidewalk and decide he was approached by 2 of those huge magpies.  He looked at me and signed "Bird" very emphatically.
13. He knows that the same word can mean different things.  Fish means the real fish, the fish sculpture, and fish in books.
14. His teacher said he is intelligent.
15. When I forgot his lunchbox at school he went to get it.
16. His new glasses give him an Elvis Costello vibe.
17. I pulled into Wendy's to get him a french fry snack and he clapped.
18. When he's tired he signs "sleepy".
19.  When he is doing something mischevious he smiles when caught and speeds up.
20. He understands conversation.  And if directed at him he will do things in the order you tell him.  As in,  If you eat the tomato you can have a chip.  He doesn't always agree but he understands.  He will go to the garden to get a strawberry or play with Winnie the Pooh or water or put rocks back in the garden.
21.He can stoop and pick things up off the ground. 
22. People who have known him for years (and he is a local celebrity) say "It's a miracle" in English and in Spanish." and it is.

Monday, July 18, 2011

Hats

More

Kiddo just continues to improve. His walking gets better all the time - he stops and starts and turns around and has more control. He still stumbles alot, but less and less. His engagement is improving too - I'm actually a little surprised these days when he stares off into space or doesn't answer me. He is playing with toys more and with a greater variety of them, and he certainly wants you to play with him more. He is making more noises, too, I think - his speech therapist says she thinks he might talk someday.

I'm looking forward to taking him back to India. I want MORE. I love what we've gotten from the stem cell treatment but I want more more more. I love to see him progress.

Wednesday, July 13, 2011

One week

Things you missed this week if you weren't here: Cash riding a horse with confidence and pleasure; coming home after a long day, putting Cash to bed, and then Cash having a dirty diaper that required a full change of his clothes; seeing Cash sign "Mommy" and "love" within 60 seconds of each other; writing a check for day care; watching Cash, who is some very small percentage Native American, be blessed by Native Americans with burning sweetgrass; having a small boy snuggle up to you in bed and then discovering he has truly unpleasant gas; seeing Cash get new glasses; paying for those same new glasses; watching calf roping with Cash; being woken up at 6:00am by Cash playing weird techno on his synthesizer at full volume; accepting donations towards Cash's future, and then bawling all the way home about how generous people are; seeing Cash wreak havoc on a TV set; getting rid of the hundredth pair of jeans with holes in the knees; working on his health insurance; driving two hours to meet with his endocrinologist for 10 minutes; and, getting a soft little hug from a boy on his way to school this morning.

Granted it was a particularly busy week, but still just one week.

Tuesday, July 12, 2011

Beautiful

Thank you to Jim Snyder and Karla Kuban! The Wild West show was beautiful and everyone was so kind to us. Cash had a marvelous time - he rode around on Skippy like a pro. This was the first year of the event and so it wasn't quite as well attended as we had hoped it might be, but honestly, the whole event was filled with so much love. The blacksmith made gifts for us, we saw rope being made, we ate homemade ice cream, I threw an axe, the chicken pooped on our square (well, he missed all the squares so we got the money), and the Native Americans blessed him with sweetgrass and gave us an arrow. And the show was entertaining and fun. The whole thing was incredibly moving and once again, I feel overwhelmed with gratitude and amazement at people's kindness and generosity. Over and over again, Cash shows me both how tough life can be and how beautiful it is.

Friday, July 8, 2011

Galloping along

Last night I was cuddling Cash and I felt sorry for everyone who is not his mom. He is soft and warm and has a fuzzy head. And he brings so many lovely people and interesting experiences into our lives. He is a daring adventure.

Wild West Show tomorrow! I am nervous, but it is nice NOT to be in charge of the event. I actually have three Music Festival events to run on Sunday and Monday, so it will be lovely to just go and have fun at the rodeo this weekend.

Cash is kind of doing the sign for monkey. He has developed a fondness for Curious George. Frogs, on the other hand, have lost favor with him.

Thursday, July 7, 2011

Video killed the radio star

You can see our Grassroots TV appearance to promote the Wild West Show by going to grassrootstv.org and entering "Wild West" into the Show Search area. We are not very dignified - Cash is everywhere and I keep having to chase him.

Tuesday, July 5, 2011

Whoa

Today was a crazy day - a senior staff meeting at 10am, Nominating Committee at noon, Board of Trustees at 1:00pm, and then Cash and I were on Grassroots TV to promote the Wild West Show at 4:00pm. Now I'm back at work at 6:00pm to actually do some work.

The TV show was hilarious - Cash was all over the place, I could not keep him still. I'm not sure it made for very good TV, but that's who he is. He wore a cowboy shirt of Uncle Jack's from 1954. He also tried to eat the microphone.

Jim Snyder is the nicest nicest person ever. A true gentleman cowboy, soft-spoken and kind. He is of course our current hero. And Karla Kuban, who wrote the script for the show, is also lovely. Cash just brings wonderful people into my life.

Monday, July 4, 2011

Cash chooses a new mommy

Cash really walks now, fyi. He still falls and walks a little crazy, but he doesn't like to have his hand held and he can navigate well.

So Mom and I took him "hiking" this weekend. We drove up the Grottos, and Cash walked along one of the paths just fine (granted, it was short and flat). We had a little picnic by the river and then we started up the short walk towards the ice caves and waterfall. Cash, who would not hold my hand, took a little tumble on some gravel. Note that this was NOT a serious fall - no blood, no scratches even - just a misstep. But a lady and her daughter were coming towards us and made a big fuss over him. "Oh the poor baby, is he okay? Oh he's hurt, oh that must have hurt. Are you okay, darling?" The big surprise here was not that Cash fell (again, he was fine), but that he responded to her happily. She hugged him, and he let her. REPEATEDLY. He put his arms around her and his head on her shoulder. I've really never seen him do anything like it with a stranger. When we left (after more cooing by her), he turned around to look after her. I was carrying him of course by that point since he had made such a show of being a poor little baby.

Needless to say, we didn't really get to go up the ice caves - I carried his 40-pound self for awhile before giving up.

Friday, July 1, 2011

Showtime

One week until the big Wild West Show benefit for Cash! It's at the Snowmass Rodeo Grounds next Saturday and Sunday - Pioneer Village opens at noon, and the show starts at 3:00pm. Cash will be wearing a cowboy hat, of course.

Jim tells me that a radio station is running ads all next week and will be on site Saturday, and that Karla is doing interviews with TV stations too. Really this is turning into a dream come true - it's going to help us take Cash back to India. I told someone yesterday that, to quote a song, I seem to have a semi-charmed life. I kind of think we all do, but I'm having a moment of appreciating mine.

Wednesday, June 29, 2011

Not 4 eyes, but 8 eyes

Work is super busy.

Hey, we have a house! We'll be living in a 3-bedroom, ground-floor unit at the Vinings in South Carolina starting September 1. It's great to have that settled, but boy is there alot to do before then.

I bought Cash his third pair of new glasses in the last 2 months today. The first pair was Medicaid-approved and broke almost immediately. The second pair I bought online for cheap and they don't fit quite right. Today, we ended up with new sturdy glasses for $225. At least they had better be sturdy.