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.)
__________________________________________________________________________


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.