Stem cells

If you have questions about stem cell treatment at Nutech Mediworld in India, please feel free to contact me at stephaniekrolick@gmail.com. We took my son Cash to Nutech twice for treatment. Cash is seven years old and he has a chromosomal rearrangement and pervasive developmental delays.

I recommend you read the early entries in the blog which discuss the trips and the results.

mostwithtoast.wordpress.com

The new blog is at mostwithtoast.wordpress.com. Please contact me at stephaniekrolick@gmail.com for the password. Really - don't feel bad - give me a holler :-)

 

Change

The Change for Cash blog started two years ago to share our plans for taking Cash to India for stem cell treatment and then continued in order to track the resulting progress. The first entries are all about why we decided to do this momentous thing and then the first few months tell how we accomplished it. The outpouring of support from our friends and community during that time forever changed my life. I will always remember and be grateful for the love and generosity that were shown to us - I think I saw some of the very best in human nature.

We chronicled Cash's first trip to India day by day. That first trip was strange and beautiful and filled with enormous anxiety as we waited to see if the stem cells would help him in any way. We saw progress during those two months, but it was two weeks after we got home that my five year old really started to walk on his own. Over the next nine months, I saw him progress faster than I ever had before, with more eye contact, more cognition, more communication. With that in mind, we decided to take him back to Nutech Mediworld and spent our second Christmas in a row in New Delhi, with the added pressure of letting CNN film our journey. In the seven months since then, I have written about how Cash continues to improve and about how while we cannot be sure that the improvement is due to stem cells, I personally believe that they have made a significant difference.

I have used the blog to share not only our experience with being stem cell pioneers, but also to write about the ups and downs of being a parent to a special needs kid. The IEP meetings, the illnesses, the thrill of even the smallest progress, the heartache of comparison, the joy of hanging around someone who is as close to the embodiment of pure love as exists in the world.

And on top of all the stem cell excitement, the two years of this blog have seen change in our lives beyond those changes involving Cash. There was a difficult divorce, the end of ten years at a great job, a move to South Carolina, eight intense months of school, the loss of Aunt Dianne in our daily lives after being with us since Cash's birth, and then most recently a new town, new home, new school, new job in Nashville.

Change for Cash and change for me isn't going to stop. That is the great, and scary, thing about life - you can't stay the same even if you want to. But I am stopping this particular blog and moving on to a new one. We are entering a new phase of our lives, it is time for a new blog. If you want to join us and see what changes are afoot, please go to mostwithtoast.wordpress.com. This new blog will be password protected, so please contact me if you want access. I mean it - I am truly happy to provide the password - just write to me at stephaniekrolick@gmail.com.

See you on the other side!

Appointments

Yesterday we took Cash to the eye doctor. He is getting new glasses with a stronger prescription. He is pretty farsighted and the doctor said that is unlikely to change much. Cash has had glasses on and off since he was about 6 months old, so this isn't too surprising.

And today I had a two hour parent-teacher conference with Ms. Finney. She is very nice and super competent. But I still don't enjoy those meetings. Maybe it is just too much of a reminder of how different Cash is. Or maybe it is that I sort of never really liked grade school - despite my straight A's - and it turns out I still don't like the rules and authority even as an adult. Cash apparently shares my feelings. It sounds like he is mostly well-behaved, but occasionally he sneaks off to be naughty and subversive :)


 

We really are home

We had a very nice, autumn-y Saturday. I spent the morning finishing unpacking from the move and setting up the apartment. There is always more to do, but I am happy with it so far. Cash's room is darling - I love to see our familiar friends like Johnny the Bear (from Grampa), the Sheep (from Alan, generously given during a Yankee Christmas exchange), and the horses (a picture from Gramma's room when she was little). Plus we have new friends, like the mouse painting I picked up in Orlando. Right now I hear music coming from the room - Twinkle Twinkle Little Star - Cash is in there playing on the synthesizer piano he got as a gift from AD's friend Terry.

Later we went shopping and bought lots of PJs. Some for Cash and some to be sent to Orlando for A Player To Be Named Later.

Cash got a haircut yesterday. I love it when his hair is short, I like to rub my cheek backwards along his head.

Thursday

Cash had a good day. He is trucking around all the time, listening, complaining, playing, initiating contact, cuddling, messing with things, and generally being a kid. This evening he saw me putting on a shower cap and commented "hat". Then while I was in the shower, he flushed the potty 5 times in a row (I can only hope nothing went down while I wasn't looking). He is in a bit of a Mommy phase - he does the sign alot, and he wants to hang out near me. I enjoy it, of course - but probably even more than most moms. I remember a time that I didn't know if I would ever see him express love for me. I worried I would always have to just know that he loved me, but I would never really feel it. But that's not how it has turned out. For years, I have known he is attached to me, and these days I feel gratified by all the "Mommy, Mommy, Mommy" signs and the way he seeks me out, makes eye contact, and snuggles. Tonight he fell asleep with his head on me as he often does, and last weekend he spontaneously gave me a kiss. I was still asleep and he leaned over and bonked me with his head (which is a Cash-style kiss). I love that he loves me. And I am grateful he expresses it.

Cash had a consultation with a specialist today about his leg braces. He had a short break from them this summer, but he will start wearing them a couple hours a day again starting tomorrow. He is not going to be happy about that.

Plus he is already banged up. He fell last weekend and skinned his knees (thank you Chris for the new band-aid glue stuff), and then fell at school on Tuesday and cut his chin. He is so adventurous and fearless, and of course we want to encourage him to try new things. But I hate it when he gets hurt. Every bit of him is precious to me, from his little toenail to his eyebrows.

I watched 7 hours of implant videos today. The procedures were happening live while we were conferenced in. Nice opportunity to learn while eating lunch and not having to wear lead.

Peaceful (relatively anyway)

I have been struggling a bit with this blog lately. It started as a way to communicate and track Cash's progress during and after India. I think it served that purpose well, and I have certainly made it clear that I think the stem cells did very nice things for Cash. He walked after the first trip, at age 5 1/2, and he stopped needing growth hormone after the second trip. Plus I firmly believe both trips increased his communication skills and improved his cognition. I see the results every day.

But we are done with stem cells, for now at least. And Cash's day to day life these days is pretty calm. He goes to school, he does new things slowly but regularly, and he is generally healthy. Being his mom isn't just like being anybody's mom - there are still plenty of issues unique to us and/or particular to having a special needs kid (like right now I'm fighting to get Medicaid for Cash, and sometimes sadness about his condition hits me like a tank), but in a day-to-day sense, things with Cash are steady.

On the other hand, our lives in a bigger sense have been full of adventure for the last year. And I keep wanting to write about that - about the move, the new job, the trials of co-parenting, how things are with my family - but that news isn't per se about Cash, and it is probably not appropriate for a public-access blog :-) So I am thinking about retiring this space...

In the meantime, right now at this moment Cash is playing Hey Jude on his iPad (he thinks it is Hey You which I know because he always points to himself during the song) and I am getting ready to put him to bed. This morning, I woke him, and Mom and I got him ready for school. He ate Cheerios. At 7:45, he got on the bus, I went to work, and Mom went to get her new driver's license. He got home at 3:30 - his teacher reported that he has made friends with Brandon, another kid in his class, and that they laugh all day long - and I got home at 4:30. We played and goofed off, had dinner, packed his lunch, bathed, and had meds. I chased him around for a bit trying to get a good picture to post. Tomorrow we will do it again.