I skyped with Cash yesterday. He looked adorable. Apparently he is settling in well. I miss him.
Wednesday, November 30, 2011
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.
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.
Monday, November 28, 2011
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.
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.... !!
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.....
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.
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.
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?!
Wednesday, November 16, 2011
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!
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...
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?
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.
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.
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.
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!
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!
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