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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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.

video

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.